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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 in  THE FACULTY OF GRADUATE  STUDIES  (The S c h o o l o f N u r s i n g )  We a c c e p t t h i s to  thesis  the required  as conforming standard  THE UNIVERSITY OF BRITISH COLUMBIA April, ©  1988  Magdalene C l a u d i a  L a i , 1988  39  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  DE-6n/81l  April 21st, 1988.  ii ABSTRACT LIVING WITH DIABETES: THE  This  s t u d y was  CHINESE ELDERLY PERSPECTIVE  designed  t o e x p l o r e how  informants  w i t h d i a b e t e s e x p e r i e n c e and  home.  method u s e d  The  phenomenological  manage t h e i r  p e r s p e c t i v e of q u a l i t a t i v e  o f t h e s t u d y was  living  w i t h d i a b e t e s and  to understand  illness the  research.  The  t h e human e x p e r i e n c e  the s o c i o c u l t u r a l  at  context  of  i n which i t  lived. D a t a c o l l e c t i o n and  collected  through  i n f o r m a n t s who undergoing fora 69  t o 90  The  a series  with  elderly  a t home.  Informants'  A l l informants are  Theoretical  sampling  sample s i z e .  were  ranged  generation  t h i s study  informants' experience  The  informants guided  of  living  the  sample s e l e c t i o n  gave d e t a i l e d  W i t h i n the c o n t e x t  i n f o r m a n t s d e s c r i b e d an  with  with diabetes,  and  determined  on a t o t a l o f  21  informants.  r e s e a r c h e r e x p l o r e d how  informants  addressed  managed t h e i r d i a b e t e s .  d a t a were c o n s t r u c t e d b a s e d  i n t e r v i e w s with the nine  diabetes.  were  Chinese  ages  first  the meanings t h e y a s s i g n e d t o l i v i n g  ways C h i n e s e  diabetes,  Data  l a t e o n s e t d i a b e t e s and  s p e c i f i c questions that directed  diabetes,  As  of i n t e r v i e w s with nine  were d i a g n o s e d  years o l d .  ran c o n c u r r e n t l y .  i n Canada.  the Chinese  the  analysis  i n s u l i n treatment  immigrants  and  elderly  i n c o n d u c t i n g t h i s s t u d y was  Intent  is  Chinese  life  informants  accounts  o f how  entire  make d e c i s i o n s i n e v e r y d a y  the  o f how  lived they  viewed  they viewed d i a b e t e s ,  p r o c e s s t h e y went t h r o u g h as  with  they sought  h e l p and  to managed  their  illness.  Based  m a k i n g m o d e l was Informants  assigned  made s e n s e  process,  the decision-making  an  "inner  logic"  used  regarding  health  matters.  to attend  perspectives. reevaluate  to client  findings  suggest  decision  making  perspectives.  practice,  to direct  these  t h e need from both  With  of the  informants each  choices  revealed they  from t h e c l i e n t s nurses'  i n relation  regard  phase  make  f i n d i n g s support the  decision-making,  professional role  needs and e x p e c t a t i o n s .  how  went t h r o u g h  The f i n d i n g s a l s o a d d r e s s  their  step  The d e s c r i p t i o n s a l s o  by informants  of nursing  showed  as they  process.  of each  w i t h d e s c r i p t i o n s o f meanings  The d a t a  experience  of  need  accounts  together  t o each step.  of t h e i r  In terms  accounts,  formulated. gave d e t a i l e d  decision-making they  on i n f o r m a n t s '  i i i a decision-  1  need t o  to clients'  t o nursing research, the  to further explore the clients'  and  the topic of  nurses'  iv Table  of  Contents  Abstract Table  i  of Contents  i v  Acknowledgements Chapter  1:  v i  INTRODUCTION  1  Background t o the Problem C o n c e p t u a l Framework Problem Statement and Purpose o f t h e Study Introduction to the Methodology 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 Perspectives D e f i n i t i o n o f Terms Assumptions Limitations Summary Chapter  2:  R E V I E W OF S E L E C T E D L I T E R A T U R E  S t u d i e s on D i a b e t e s 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 Two Approaches to the Conceptualization of the I l l n e s s Event 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 About the I l l n e s s Event Studies t h a t Attend t o t h e Meaning of L i v i n g With an I l l n e s s Summary Chapter  3:  METHODOLOGY  4: THE  INFORMANTS'  1 3 7 9 9 12 13 13 13 15 15 18 21 21 24 27 29  Subject Selection Criteria for Selection Rationale Recruitment of Informants C h a r a c t e r i s t i c s of Informants Data C o l l e c t i o n and A n a l y s i s E t h i c s a n d Human R i g h t s Summary Chapter  i  ACCOUNTS  View of Diabetes Cause of D i a b e t e s 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 Views of Diabetes as an I l l n e s s Trust i n Blood and/or U r i n e Tests 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 Making Health D e c i s i o n s Evaluation of Health Status Choice o f H e a l t h Care Resources Informants' Information C o l l e c t i n g  29 29 30 30 31 33 36 37 38 39 39 43 44 45 47 49 52 53 79  V informants' Resources Informants' Action Summary Chapter  Analysis  of Health  C r e a t i o n o f Own  care  Treatment  5: D I S C U S S I O N  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 Making Health Decisions Issues and D i s c r e p a n c i e s between C l i e n t s ' Health P r o f e s s i o n a l s ' E x p l a n a t o r y Models Summary Chapter  79 Regime.87 89 89  6: SUMMARY, C O N C L U S I O N S , AND NURSING  Summary a n d C o n c l u s i o n s Implications f o r Nursing Implications f o r Nursing Implications f o r Nursing  92 95 and  IMPLICATIONS  Practice Education Research  103 110 FOR I l l I l l 114 117 118  Bibliography  122  Appendices Appendix A - I n f o r m a t i o n and Consent Form 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 Appendix C - Sociodemographic Data  129 130 132 133  vi ACKNOWLEDGEMENTS I would l i k e t o t h a n k t h e members o f my t h e s i s committee, P r o f e s s o r s J o a n A n d e r s o n ( c h a i r p e r s o n ) and J u d y Lynam f o r t h e g u i d a n c e t h e y have g i v e n 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. J o a n A n d e r s o n f o r t h e i n s p i r a t i o n s h e g i v e s , and f o r s h a r i n g h e r e x p e r t i s e and h e r u n f a i l i n g e n t h u s i a s m i n phenomenological research. I a l s o thank J u d y Lynam f o r h e r u s e f u l f e e d b a c k and c l e a r d i r e c t i o n s . T h e r e 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 s u p p o r t e d me t h r o u g h o u t t h i s p r o c e s s . Thank y o u , S i g g a and M a r j o r i e , f o r t h e c o n s i s t e n t warm and e m p a t h e t i c a t m o s p h e r e b o t h o f y o u p r o v i d e a s we s e a r c h f o r d e e p e r meanings o f human e x p e r i e n c e s . I would l i k e t o 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 e n c o u r a g e m e n t , and t h e f a i t h t h e y have i n me t o s u c c e e d . And thank y o u , M i s s A u b e r t , f o r a l l h e r prayers. F i n a l l y , I would l i k e t o e x p r e s s my h e a r t f e l t t h a n k s t o t h e n i n e i n f o r m a n t s . 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 p e r i e n c e s and a renewed l o o k a t t h e wonders o f t h e phenomenon o f t h e human c o n d i t i o n .  Chapter  1  1  INTRODUCTION Background The  focus  informants home.  this  research  with diabetes  Diabetes  recognized The  of  as  magnitude  statistics,  major  of  this  the  Problem  study  experience  mellitus,  a  to  i s to explore  and  disease  many a s  reported  t o have d i a b e t e s  (Canadian  Although  there  for diabetes  m e d i c a l - and  diabetes social not  not  only  serious  of  other  and  lives  of  chronic  only  people  faced  illnesses,  have m e d i c a l  with  a  chronic  c o m p l i c a t i o n s , but  tremendous a l t e r a t i o n  (Harris,  urine  or  L i n n , and  of  by  disease,  proper  pay  survey,  time,  they  Pollack,  they  diabetes  of  which  many  They  often  a l s o have t o d e a l  diet,  monitoring,  and  are  leads  with  involving  m e l l i t u s presents  to  a  exercise, foot  i t s own  r e g i m e and More so  for diabetes  living  own  share  care  1984).  assume p r i m a r y  in their  with  (Strauss, 1975).  i t s treatment  therapy  afflicted but  the  diabetes.  than  any  responsibility Often,  further  other  mellitus requires  ( W i l l i a m s , 1981).  homes.  unique  warrants  day-by-day, even hour-by-hour, a t t e n t i o n to  most o f t e n  are  1981).  present  from  people  situation  health professionals.  most b a s i c a s p e c t s with  groups.  Canadian^  a t -the  problems,  blood-glucose  i n terms of  research  to  Health  lifestyle*  In addition,' diabetes challenge  a l l age  at  is  379,000 C a n a d i a n s  suffering  p s y c h o l o g i c a l problems  medication,  illness  t e c h n o l o g i c a l advances have a s s i s t e d g r e a t l y i n  prolongation Like  cure  in  Chinese  diabetes,  affecting  is reflected  w h i c h s t a t e t h a t as  i s no  manage t h e i r  more commonly c a l l e d  chronic disease  how  patients  some o f  These  for daily  the  persons care,  health professionals  play  o n l y a minor  education, health  role  and s u p p o r t  maintenance  professionals  for  year  Although c l i e n t s managing t h e i r  of  their  a s s i s t the  u s u a l l y do n o t  hours per  how c l i e n t s  to  activities  person with diabetes waking  by p r o v i d i n g p e r i o d i c  more t h a n  there  i s yet  Through working researcher  her  years  clients  and h e a l t h  by c l i e n t s  ways t o  diabetes  in their  lives,  support  of  family  doctors  trained  Western  health  the  other  medical  conflicts due t o  care often  a lack  of  for  much t o  members,  often  illness  in  interest  the  in  the  on h e a l t h  they  In  managing  often  utilized  herbalists,  Chinese  acupuncturists, health  as w e l l  as  professionals,  on  p l a c e d s t r o n g e m p h a s i s on a d h e r e n c e  clients  understanding  were a c c u s t o m e d t o .  between  understanding  health of  of  alternate  As a  result,  p r o f e s s i o n a l s and  each o t h e r s '  and  Both Chinese  i n what  manage d i a b e t e s .  Western  context  health.  professionals. differed  to  illness  in public  views  as  studying  with d i a b e t e s ,  friends,  and had l i t t l e  arose  5,800  be e x p l o r e d  Chinese c l i e n t s  professionals.  hand,  responsibility  work  in Chinese medicine,  regimes,  systems of  daily  the  his  professionals often  as a p p r o p r i a t e  twelve  divergent  and h e a l t h  regarded  the  of  was c h a l l e n g e d by t h e  held  health  with  and manage t h e i r  with Chinese c l i e n t s  illness  in  of  The r e s e a r c h e r ' s  of  contact  to  their  how 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 e s p e c i a l l y grew o u t  six  These  health  1981).  and manage  lives.  and f a m i l y  1981).  have d i r e c t  assume p r i m a r y  experience  daily  (Beebe,  (Williams>  disease,  client  2  assessment,  view  to  clients  of  diabetes. Kleinman  (1978) a d d r e s s e d t h e  l a y and p r o f e s s i o n a l p e o p l e  conflict  that arises  when t h e y d i v e r g e  in  their  between views  of  disease guide  and  illness.  He  developed  health p r o f e s s i o n a l s  perspective  on  clients'  management  of t h e i r  in gaining  experience  Kleinman's c u l t u r a l to the  a broader  s y s t e m model  perceived  (1978) was  discordance  social  and  care.  Kleinman  and  structure illness of  being  and  illness  cultural  He  experiences  addressed  the  the  cultural  factors influencing disease  upon t h e  disease  illness,  unlike disease,  embedded  i n a complex  i s shaped  the  1).  social  (family, social  explanatory  determinants.  treatment  look  by  cultural  factors,  cultural the  that and  is  nexus.  s y s t e m model clients' three  to  illness structural  of h e a l t h c a r e : p r o f e s s i o n a l ,  E a c h domain may  i n f l u e n c e d by s o c i a l  E a c h domain has  but  cultural  on  and  recognized  conceptualized  context  view  d i s o r d e r , when,  n e t w o r k , c o m m u n i t y ) , and  healers).  models  He  of  author  and  the  in states  The  family, social  (see F i g u r e  (nonprofessional as  disorder.  (1978) p r o p o s e d  domains w i t h i n t h e popular  the  and  in  Conversely,  when p a t i e n t s  entire  h e a l t h p r o f e s s i o n a l s understand  experience  systems.  human e x p e r i e n c e  discrepancy  the  between  abnormalities  health professionals disregard social  as  and  in influencing  of d i s v a l u e d c h a n g e s  f u n c t i o n , the  in  and  illness,  factors play  represents  problems as c o n s t i t u t i n g  Kleinman  their  (1978) made a d i s t i n c t i o n  Disease  in social  contrary,  assist  and  f u n c t i o n o f body o r g a n s and  represents  sickness.  the  illness.  and  3  clearer  developed  between l a y  crucial  disease  to  Framework  i n t e r p r e t a t i o n s of d i s e a s e  s i c k n e s s and  and  of s i c k n e s s and  professional role  s y s t e m model  illness. Conceptual  response  a cultural  i t s own  be and  folk  conceptualized cultural  explanatory  model  with  4 distinct social  explanations of s i c k n e s s , explanations s p e c i f i c  positions  occupied  These e x p l a n a t o r y models  and t h e s y s t e m s o f meaning i n t u r n i n f l u e n c e how p e o p l e  experience,  and manage t h e i r  individuals  i n t h e p r o f e s s i o n a l domain may e x p l a i n ,  and  manage  aspects bases of  illness  sickness.  On t h e o t h e r  distort  these  one  hand, t h e p o p u l a r  different  domain  experiences  e x p l a n a t o r y models.  domains may complement, compete w i t h , o r  another.  SOCIOCULTURAL  Medical Care System(s) (Professional)  Figure  understand,  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 t h e s e a result,  perceive,  and p s y c h o l o g i c a l  i t s e x p l a n a t o r y model on p e r s o n a l and s o c i a l  illness.  employed.  F o r example,  f o c u s i n g on b i o l o g i c a l  of the d i s e a s e .  t o the  SYSTEMS  P o p u l a r C u l t u r a l System of H e a l t h Care ( I n d i v i d u a l and F a m i l y Based)  F o l k Care System(s)  1. K l e i n m a n ' s c o n c e p t u a l i z a t i o n o f t h e h e a l t h c a r e system  (Kleinman,  1978, p.422)  As  Among t h e t h r e e d o m a i n s , a b o u t takes  place  i n the popular  enter  the p r o f e s s i o n a l  domain.  or f o l k  5  70% t o 90% o f h e a l t h c a r e Most  domains.  i l l n e s s episodes  never  When t h e y d o ,  d e c i s i o n s a b o u t where and when t o seek c a r e , how l o n g t o r e m a i n i n c a r e , and how t o e v a l u a t e popular  also  E i s e n b e r g , and Good,  Kleinman's c u l t u r a l n u r s i n g as i t d i r e c t s  sociocultural  systems.  s y s t e m model nurses  with t h e i r  i n the  of the f a m i l y  1978). is particularly  to explore  relevant  different  The " c l i e n t s y s t e m " and t h e " n u r s i n g  s y s t e m " may be c o n c e p t u a l i z e d a s s e p a r a t e  values,  occur  domain, most commonly i n t h e c o n t e x t  (Kleinman,  to  treatment  sociocultural  own e x p l a n a t o r y m o d e l s due t o d i f f e r e n t  systems  beliefs,  norms, and p e r c e p t i o n s o f 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  clients,  t h e y be aware o f b o t h  sociocultural  concerned  for clients  their  with  illness.  experiences acceptable their the  caring Only  care  everyday  different focus  As n u r s e s  must a l s o  the c l i e n t  critical  cultural  help c l i e n t s  take  into  values,  cope  account  with  t h e meaning  t h e i l l n e s s has on  s y s t e m and t h e n u r s e ' s  as nurses  groups.  work w i t h c l i e n t s  Such u n d e r s t a n d i n g  on t h e m u l t i p l e d e t e r m i n a n t s  experiences.  illness  lives.  Understanding especially  with  be a b l e t o g i v e a p p r o p r i a t e and  t o them.  i l l n e s s , nurses  clients'  that  Nursing i s  and h e l p i n g them cope  i l l n e s s has f o r them, and t h e e f f e c t s  their  is  systems.  by u n d e r s t a n d i n g  w i l l nurses  i t becomes c r u c i a l  As w e l l ,  beliefs,  nurses  w h i c h shape  are directed  own  system  from  helps nurses t o clients'  t o examine t h e i r  p e r c e p t i o n s o f h e a l t h and i l l n e s s , and t h e  own  social  organizational  determine Lastly,  people's  structures  subjective  understanding  especially provision  important  both  6 o f h e a l t h c a r e w h i c h o r d e r and  experiences  the c l i e n t  as nurses  (Anderson,  1986).  and t h e n u r s i n g s y s t e m i s  negotiate with c l i e n t s  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  f o r the  economical  care. Numerous n u r s e the  r e s e a r c h e r s and e d u c a t o r s  need t o u n d e r s t a n d  illness.  As Benner  the c l i e n t s '  (1984)  stated,  o f t e n have t h e i r  understanding  of t h e i r  express  as w e l l  this,  interpretations, patient's Davis  condition.  cultural and  perspectives.  that  nurses  clients' within  the s o c i a l  system. an  subjective system, systems.  should  that  clients'  (1985) a r g u e d  n o t be v i e w e d  system,  she a d v o c a t e d  from  structures  be  t h e need  individuals'  understood  of the h e a l t h care  organizational  Besides  different  o n l y through the  p a r t i n o r d e r i n g and d e t e r m i n i n g  experiences.  care  derived, defined, that  b u t must a l s o  organizational  T h i s i s because these  important  provide  L e i n i n g e r (1974) s t r e s s e d t h e  J.M. A n d e r s o n  sociocultural  (p.84)  can better  needs a s human v a l u e s a r e c u l t u r a l l y  experiences  on t h e i r  i n the  and t a k e d i r e c t i o n  of a t t e n d i n g t o the f a c t  reinforced.  illness  role  and r e c o v e r y e x p e r i e n c e ,  (1978) m a i n t a i n e d  importance  A l l o w i n g them t o  a s r e s p e c t i n g and b u i l d i n g  when t h e y a r e a b l e t o u n d e r s t a n d clients'  do, t h a t  own i n t e r p r e t a t i o n and  c a n p l a y an i m p o r t a n t  illness  supported  e x p l a n a t o r y models of  N u r s e s must remember, and e x p e r t n u r s e s patients  have  understanding  structures  play  people's the c l i e n t  t o e x p l o r e t h e n u r s i n g and f o l k  Kleinman's c u l t u r a l by  researchers.  nurse  Kleinman's construct context  framework their  tremendous  insight  f a m i l y and  how  context.  J.M.  Anderson  model has  A n d e r s o n and to guide  their  life. into  Chung  (1982a)  study  on  parents  T h e i r s t u d y has  t h e meaning t h e manage t h e  In a n o t h e r (1986)  study,  As  a result,  The  child  the  i n decision-making  s t u d i e s mentioned  are  i n the  nurses  s i c k n e s s has  f o r the  framework  i l l u s t r a t e the d i s s o n a n c e  advocated  used  parents  given  Kleinman's  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  patients  how  have  r o u t i n e s of e v e r y d a y  in  she  7 extensively  been u s e d  i l l n e s s experience with t h e i r  of everyday  this  system  and  invaluable  of  that and  exist  families.  including a l l  affect  their  e x e m p l i f y how  lives. research  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 t o a s i g n i f i c a n t  of  n u r s i n g knowledge  cultural it  system  to  improve  model was  provided d i r e c t i o n  to  patient  particularly inquire  into  in  helped  may  immigrant  importance  processes  that  life  care.  body  Kleinman's  useful  for this  the e x p e r i e n c e  study  of  as  living  with diabetes. Problem Statement The  g e n e r a l problem  attention  and  Diabetes  i s unique  bear  by-hour  ways  on  self  care  informants  the  experience  and  experience  among c h r o n i c i l l n e s s e s .  in their  f o r not  primary  their  role  lack  i s that of  informants.  Informants  a  actively  manage t h e i r  not  even  hour-  face serious  illness.  Although  i n the treatment  is s t i l l  more  l i v i n g with  for day-by-day,  home, t h e y a l s o  managing  Study  study  i l l n e s s i s managed b y C h i n e s e  p l a y the  there  of the  in this  tremendous r e s p o n s i b i l i t y  complications  disease,  Purpose  addressed  needs t o b e f o c u s e d  diabetes  only  and  o f knowledge o f how illness.  of  their  they  Moreover,  data  based  on t h e i n f o r m a n t s *  knowledge t h a t Large  i s seldom e x p l o r e d .  numbers o f C h i n e s e  the Canadian  These b e l i e f s determining  network  and p r a c t i c e s  what p e o p l e ' s  the western Chinese  ethnic  Chinese  part i n  from  that  the purpose  informants  of h e a l t h p r o f e s s i o n a l s i n  Hence, s t u d i e s o f t h e s e  nature  enable  Based  of the study  experience  health  professionals  i s to explore the  manage d i a b e t e s  i n the context  on K l e i n m a n ' s c u l t u r a l  The s p e c i f i c  in this  system  i s the Chinese  study t o explore the  questions that directed  living  informant's  this  experience of  with diabetes?  2. What does  l i v i n g w i t h d i a b e t e s mean t o C h i n e s e  informants? 3.  How do C h i n e s e  i n f o r m a n t s manage t h e i r  of t h e i r  model,  :What  i l l n e s s are  o f d i a b e t e s , and t o u n d e r s t a n d  q u e s t i o n s were a d d r e s s e d  phenomena.  clients  group.  lives.  specific  practices.  meaning o f 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  informant's  how t h e s e  1.  p l a y an i m p o r t a n t  and  e x p e r i e n c e and management o f t h e i r  the  Therefore,  are  culture  e x p l a n a t o r y models o f i l l n e s s a r e  Studies of t h i s  understand  daily  The C h i n e s e  of h e a l t h b e l i e f s  h e a l t h care system.  clients'  essential.  this  a r e consumers w i t h i n  The 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 o f C h i n e s e  w i t h d i a b e t e s may d i f f e r  to  immigrants  h e a l t h care system.  represents a d i s t i n c t  like.  8  p e r s p e c t i v e s c o n t r i b u t e t o a wealth of  diabetes?  study  Introduction  T h e p h e n o m e n o l o g i c a l method chosen  for this  study.  of q u a l i t a t i v e  T h i s approach  as w e l l  discussed. approach  as the phenomenological  The r a t i o n a l e s  will  for  available around  reasons.  Just  phenomenological  method o f r e s e a r c h  a s t h e r e a r e m u l t i p l e methods understanding  that  (Rist,  world,  1979).  depending  about  qualitative  on t h e p r o b l e m  The r e s e a r c h e r c h o s e s t u d y because  r e s e a r c h i s congruent  s t u d y and t h e p r o b l e m s e x p l o r e d . emphasizes t h a t  there  the world  the b a s i c  (Rist,  inherent  (Knaack, 1 9 8 4 ) .  recognizes consciousness with oneself elicit  acquire  (Munhall  from people  i n t e r p r e t and  of q u a l i t a t i v e  from  Two p h i l o s o p h i c a l  i n the phenomenological  Qualitative  1979).  i s t h e s t u d y o f human e x p e r i e n c e  perspective  of both the  of a s u b j e c t .  Phenomenology, w h i c h r e p r e s e n t s one t y p e approach,  of t h i s  research  t o d i s c o v e r how p e r s o n s  g i v e meaning t o s i t u a t i o n s  i s being  assumption  w i t h the purpose  Qualitative  behaviour  that  the q u a l i t a t i v e  i s value t o the a n a l y s i s  e x p e r i e n c e and o u t e r  r e s e a r c h a l s o attempts  to  be  perspectives  the q u a l i t a t i v e  method o f r e s e a r c h f o r t h i s  and  will  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  explored  inner  approach,  Methodological  f o r g a i n i n g informed  interpreting  of  Qualitative  for selecting a  and  r e s e a r c h e r chose  several  was  be p r o v i d e d .  Philosophical  The  research  r e p r e s e n t s both a  p h i l o s o p h y a s w e l l a s a method o f r e s e a r c h . research,  9  t o the Methodology  approach.  as s i m u l t a n e o u s and O i l e r ,  the person's themes a r e  The f i r s t  theme  c o n t a c t with the world  1986).  Phenomenology aims  i n f o r m a t i o n t h e y a r e c o n s c i o u s o f , and  information that  i s meaningful  t o them.  Phenomenology,  therefore, an  o b j e c t i v e manner.  the  Instead, the ultimate goal  subjective, interpreted A second  understand  experience  human e x p e r i e n c e  (Munhall  a holistic  available  i n the experience  attention  c e n t e r s on e x p e r i e n c e  complexity  of i t s context  phenomenological  of l i v i n g  phenomenological congruent  experiences  advocate based  to e l i c i t  with diabetes.  subjective  for this  research  informants' subjective  As a t h e o r y , t h e  (1978).  t h a t humans s u b j e c t i v e l y  on what  i s meaningful  r e s e a r c h has s p e c i a l  significance  and m e a n i n g f u l .  i n the experience  and o b j e c t i v e ,  and s t r i v e  meaning t h a t t h e e x p e r i e n c e  interpret  t o the  p r o f e s s i o n values the viewpoint  that phenomenological  i savailable  This i s  t o them.  p e r s p e c t i v e i s consonant with  (1983) n o t e d that  i n the  1986).  and o i l e r ,  a p p r o a c h was c h o s e n  human phenomena a r e h o l i s t i c  Ornery  The f o c u s o f  as i t i s l i v e d  (Munhall  p r o f e s s i o n , as t h i s  phenomenological  "all  v i e w and c o n s i d e r s a l l t h a t i s  method o f 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  Phenomenological  that  1986).  and O i l e r ,  w i t h K l e i n m a n ' s e x p l a n a t o r y models  because both  nursing  of i n d i v i d u a l s .  under s t u d y .  s t u d y a s t h e r e s e a r c h e r aimed experiences  i s to obtain  theme i s t h a t phenomenology a t t e m p t s t o  Phenomenology a d o p t s  The  10 . as i t i s i n  does n o t a i m t o d e s c r i b e t h e s i t u a t i o n  The  this  viewpoint.  approaches  consider  under s t u d y ,  t o understand  both  the t o t a l  h a s had f o r t h e p a r t i c i p a n t s "  (p.62). Many n u r s e phenomenological the  r e s e a r c h e r s have r e c o g n i z e d t h e v a l u e o f methods.  use o f phenomenological  pointed  F o r example, Watson methods  out t h a t , as a humanistic  (1985)  supported  i n nursing research.  discipline,  nurses  She  should  c h o o s e r e s e a r c h methods t h a t  " a l l o w f o r the  s u b j e c t i v e , inner  11  w o r l d o£ p e r s o n a l meanings o£ t h e nurse and the o t h e r p e r s o n " (p.17).  Oiler  (1982) s t a t e d t h a t t h e  merits serious attention nurses  to explore  approach than  "shifts  nurses  as  allegiance  than  (Psathas  simplicity,  cited  Following researcher w i t h an  the  analysis,  the  collection. dependent  1982,  researcher  and  reality  the  of d a t a  of d a t a ,  and  The  criteria  by w h i c h q u a l i t a t i v e  credible  experience similar  to t h e i r  people,  such  experience  other  A study  r e s e a r c h was  is the and  judged  A qualitative  study  d e s c r i p t i o n s or  t h a t the  is also  is  people  having  that  t h e d e s c r i p t i o n s as credible  when o t h e r  r e s e a r c h e r s or r e a d e r s , c a n  (Sandelowski,  conclude,  research  faithful  recognize  when c o n f r o n t e d w i t h  in a study To  as  such  immediately own.  and  i n data  collection  of r e s e a r c h d a t a .  o f human e x p e r i e n c e  would  in  1986).  when I t p r e s e n t s  interpretations  it  Oiler,  living  context  therefore,  during data  (Munhall  is  of  i s c o n s t r u c t e d between b o t h  informants  the c r e d i b i l i t y  hammer"  collection  participates  analysis  include  the  the s o c i o c u l t u r a l  process  interpretation  on how  rather  complexity  t h e human e x p e r i e n c e  researcher a c t i v e l y The  economy,  this  p.181).  or d i s e a s e , and In t h e  asserted,  phenomenological r e s e a r c h , t h e  g o a l s of  i t is lived.  she  l e n s r a t h e r than  alms t o u n d e r s t a n d  illness  As  t o a v a l u i n g of enlargement  the  in Oiler,  approach  i t opens a v e n u e s f o r  human phenomena.  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  rather  which  the  from  phenomenological  i t after  having  recognize  only read  about  1986).  the phenomenological  deemed e s s e n t i a l  for this  method o f  qualitative  r e s e a r c h as  the  the  12 p h i l o s o p h y and m e t h o d o l o g i e s with Also,  the purpose  potential  method  i s regarded  Chapter  3.  process  Pefinitions Terms  which  may  be  explicitly  state  t h e meanings t h e y  1.  informant  referred  was o f C h i n e s e  hold  immigrant diabetes  i n Canada. (Type  individual 2. d i a b e t e s  in  order  in this  of t h i s  with  and i s a f i r s t  over  forty,  generation  acquired  late  onset  treatment.  d i s o r d e r which o c c u r s  i s deficient,  medication,  resulting  i n t h e body.  The  u r i n e or blood  consequences with  i n abnormally  glucose  involving  high  Moreover, these  -the process  individuals diabetes.  of l i v i n g  - e x p l a n a t i o n of s i c k n e s s which  the understanding  of the cause  blood face a  and f o o t  diabetes. 4. e x p l a n a t o r y model  insulin  diet, exercise,  monitoring,  f o r n o t managing t h e i r  diabetes  when  I n d i v i d u a l s with diabetes  of l i f e s t y l e  ( H a r r i s e t a l . , 1984).  influences  to  study.  who was a g e d  I I ) and r e q u i r e d i n s u l i n  tremendous a l t e r a t i o n  experience  ambiguous  was managing h i s / h e r d i a b e t e s a t home.  levels  serious  to  informant  The i n d i v i d u a l  -an e n d o c r i n e  secretion  experience.  - f o r the purpose  t o an i n d i v i d u a l  ethnic origin,  tremendous  be d e s c r i b e d i n  d e f i n e d below  with diabetes  special  Terms  (see R a t i o n a l e ) , the Chinese  diabetes  will  subject  have  Chinese  been  of  interpretations  3.  as having  f o r e x p l o r i n g t h e phenomenon o f human  of the methodological  sugar  a r e congruent  t o 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  Details  study  approach  o f t h e s t u d y and t h e p r o b l e m t o be e x p l o r e d .  the phenomenological  significance  of t h i s  of the  with  care  face  illness,  the  p e r c e p t i o n of  management o f i l l n e s s 5,  and/or  illness  (Kleinman  management o f d i a b e t e s controls,  the  -the  treats  way  experience,  et  al.,  an  individual  13  and  1978). handles,  diabetes. Assumptions  S e v e r a l a s s u m p t i o n s were made by approaching  this  have v a r y i n g explanatory  m o d e l s , and The  assumed  of  d e p e n d i n g on  illness  that people  researcher  informants' illness.  that s o c i a l  p e r c e p t i o n of  Lastly,  descriptions of  the  of t h e i r  researcher  researcher  and  illness cultural  illness  researcher illness  and  informants  factors  own  with  Another i n f l u e n c e the  t h e y manage  assumed t h a t  experience  their  may  illness  a t home.  how  in  t h a t people  experience  a l s o assumed t h a t  a c t i v e l y managed t h e i r  a s s u m p t i o n was  accounts  The  interpretations  differently. diabetes  study.  the  their  informants'  represent actual  reality. Limitations  Due selected  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 f r o m one  recognizes  urban a r e a .  t h a t these  s u b g r o u p of t h e experiences  The  researcher, therefore,  Informants represented  a  p o p u l a t i o n , whose e x p e r i e n c e s  of r u r a l  were  specialized may  differ  from  populations. Summary  This  chapter  identified g i v e n an by  the  the  clients,  described  problem statement  i n t r o d u c t i o n t o the  researcher  negotiate  has  care  i s that  that  the  background  and  purpose of the  methodology.  i n order  is effective  t o the  The  problem,  study,  position  and  taken  for health p r o f e s s i o n a l s to  and  culturally  h e a l t h p r o f e s s i o n a l s must t a k e  a first  acceptable step  to  to  understand  clients*  researcher  must a l s o a t t e m p t  their  illness  attempt  studies  the  illness  context  illness illness.  t o understand of t h e i r  to explore  of d a i l y relevant  experience life.  As  of t h e i r  14  The  how c l i e n t s  lives.  explanations  from the c l i e n t s '  diabetes  literature  diabetes,  models o f i l l n e s s .  s t u d y has been d e s i g n e d  with  literature This  clients'  w i l l be c o n d u c t e d  This clients  i n the context  to e l i c i t  understand  explanatory  manage  researchers i l l n e s s and  perspectives,  further  t h e human phenomenon.  to explore  how  and manage t h e i r  The f o l l o w i n g c h a p t e r  Chinese illness in will  examine  t o t h e p r o b l e m and p u r p o s e o f t h e s t u d y .  review w i l l  include  the Chinese population,  studies  related to  the c o n c e p t u a l i z a t i o n  e v e n t , and t h e c o n c e p t u a l i z a t i o n  of the  o f t h e management o f  Chapter REVIEW OF In t h i s e x p l a i n why with  diabetes  review why  important  experience  i s divided into  diabetes  Chinese  was  two  illness  three  be  provided  Chinese  informants  The  sections.  section explains  A  first  literature  A second s e c t i o n e x p l a i n s  were i n t e r v i e w e d .  approaches authors  mentioned afflicted  chronic  earlier with  situation  use  amongst c h r o n i c  (see  t h a t may  Therefore,  on  Lastly,  why  a third  to c o n c e p t u a l i z e  section the  Diabetes  Background  diabetes  have t o d e a l w i t h  illness.  are  not  to the  only  Problem),  faced  with  a  lead to s e r i o u s c o m p l i c a t i o n s ,  complex d a y - t o - d a y management o f  diabetes  illnesses,  presents  and  deserves  i t s own  they  their  challenge  further study  by  health  professionals . Numerous p r o f e s s i o n a l s i n t h e sciences diabetes.  fields  therapy,  s t u d i e s on d i a b e t e s  of d i a b e t e s ,  and  research  together  with  treatment  s t u d i e s , the  role  of d i a b e t e s  utilization  social research  concentrated of  a result,  t o manage t h e i r  p r o f e s s i o n a l s have  important  extensive  treatment As  and  on  the  complications, major  advances  resulting  of new  on  from  knowledge,  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 health  the  drug therapy.  have been made i n t h e these  health care  have c o n t r i b u t e d t o t h e  Valuable  pathophysiology diet  to  event.  As  also  how  will  manage d i a b e t e s .  Studies  people  literature  to explore  and  studied.  informants  presents  SELECTED LITERATURE  s e c t i o n , background i t was  15  2  they  diabetes  effectively,  I n c r e a s i n g l y acknowledged  p l a y as p a t i e n t e d u c a t o r s .  the  Within  the  field can  o f n u r s i n g , s t u d i e s have been done t o examine how  be a c t i v e l y  about  involved i n diabetic  the s k i l l s  educators  with diabetes  behaviour,  from other  and d i s c u s s e d  (Jackson  and B r o u s s a r d ,  programs  like  been d e v e l o p e d  the Native  With r e g a r d s was p l a c e d  studies  factors  Diabetes  belonging  individuals  (Hess,  adhere t o medical  1987).  Program  Researchers  education  Educational (Hagey, 1 9 8 4 ) have  cultural  t o be w e l l - i n f o r m e d , Davis,  emphasis t r a i n e d , and  and H a r r i s o n , 1 9 8 6 ) .  to help c l i e n t s  (Lockwood, F r e y ,  Gladish,  A major g o a l  their  of p a t i e n t  education,  was t o "enhance t h e a b i l i t y o f  t h e r a p e u t i c r e g i m e n s and t o cope  t h e i m p l i c a t i o n s o f c h r o n i c d i s e a s e and i t s i m p a c t lives"  beliefs  assess  educators  i n t o account  have a l s o s t r e s s e d t h e i m p o r t a n c e o f  t h e p a t i e n t ' s own n e e d s , a t t i t u d e s , and  when t e a c h i n g p a t i e n t s .  Educational  on  (p.135).  Diabetic taking  with  S h r a u g e r , B e c k e r , G a l l a g h e r , and  s t a t e d by Hess e t a l . ( 1 9 8 6 ) ,  their  Many  on d e s i g n i n g e f f e c t i v e and  regimens  1986; Mazze, 1 9 8 4 ) .  t o comply with  groups.  i n general,  i n patient education  H i s s , 1986; R e t t i g ,  with  to patient  education  on h e l p i n g c l i e n t s  diabetes  patients  groups.  influence patient  to d i f f e r e n t  to diabetic  strategies  as  that  1987; H a l l ,  have a l s o c o n c e n t r a t e d  Wiltse,  cultural  i t s relevance  creative  and  on t h e e d u c a t i o n o f  t o c a t e r t o t h e u n i q u e n e e d s , v a l u e s , and  of people  motivated  nurse  ( G u t h r i e , 1986).  have d e s c r i b e d c u l t u r a l  beliefs  and t o f i n d o u t  and knowledge r e q u i r e d o f t h e s e  Some r e s e a r c h has a l s o f o c u s e d patients  education,  16 nurses  Profile  individual  T o o l s such  as t h e Diabetes  (Hess e t a l . , 1986) have been d e v e l o p e d  e d u c a t i o n a l needs o f l e a r n e r s .  The  to  development  of  the  Diabetes Educational  identification,  by  characteristics  that  in  patient  health  areas  i d e n t i f i e d as  needs  included  "barriers  to  i n an  scales  to  control  of  diabetes  These t o o l s of d i a b e t i c  and  accounted  and  these  It  factors  compliance.  The  i d e n t i f y areas improve  patients' diseases. there  of  An  to  and  professionals' patients'  regimens research,  v i e w s of d i a b e t e s  v i e w s may  to  the  note,  and  differ,  Improvement  however,  beliefs  that  using  tools  to  was  work on  to i n order  to  regimens.  have been most c o n c e r n e d  i s a d i s c r e p a n c y between the  the  b e l i e f s in r e l a t i o n to  to medical  e m e r g i n g body o f  and  1987).  tools, therefore,  medical  Scale  Control  Moreover, these  professionals  compliance  compliance  attitudes  items.  these  professionals  Linn,  and  medical  illness  Immensely t o  attitudes  for health  patients'  Health  role  Harris  in r e l a t i o n to  i s important  predetermined  and  form a  with prescribed  b e l i e f s about  have c o n t r i b u t e d  for patients'  to  used H e a l t h Locus of  t h e s e t o o l s measured p a t i e n t s ' selected  impact",  a Diabetes Health B e l i e f  ( E d e l s t e l n and  education.  educational  attitudes, beliefs,  compliance  t o measure a t t i t u d e s examined  of  i n r e l a t i o n to d i a b e t e s .  S t u d i e s have a l s o  t r e a t m e n t , and  patients,  These a r e a s were u s e d  developed  explain  Interventions  "psychosocial  patients'  17  the  patient-  t o o l on  f o r assessment  problems",  knowledge  have a l s o  o£  t o more e f f e c t i v e  t e s t i n g the  important  summary of  attempt  regimens.  After  "control  b e h a v i o u r s , and (1987)  lead  compliance".  comprehensive  Linn  care providers,  could  education-  P r o f i l e involved  i n the  about  treatment  of  however, s u g g e s t s  patients'  and  ( A n d e r s o n , R.M.,  f o r example, b e c a u s e  the  that  health  1985). their  The  priorities  may n o t be t h e same a s t h e h e a l t h p r o f e s s i o n a l s a s  t h e y manage d i a b e t e s (Harris,  i n the context  parents  with d i a b e t i c  medical  regimen.  apart  treatment general their  from  diabetic  their  concerns  children.  illness  Parents  also  also  (Sims,  of what  of d i a b e t e s .  as they w i l l i t i s like  As health  experience  d e s c r i p t i o n s have much  with  acknowledged personal,  cultural  discomfort.  group.  that i l l n e s s  interpersonal,  their  how t h e s e  view  illness.  with  diabetes,  clients  Health p r o f e s s i o n a l s face  e v e n g r e a t e r c h a l l e n g e when t h e p e r s o n  to a d i f f e r e n t  and h o l i s t i c  Population  to understand illness.  Although  d e s c r i p t i o n s of t h e i r  i n working with c l i e n t s  and manage t h e i r  that  w r i t t e n on d i a b e t e s , few  to live  on t h e C h i n e s e  p r o f e s s i o n a l s need  that  child's  1986; Sims, 1 9 8 0 ) .  These p e o p l e ' s  mentioned above,  concern  w i t h d i a b e t e s and t h e meaning  on p e o p l e ' s  for clients  t o manage  i s emerging  g i v e us a c o m p r e h e n s i v e  Studies  with f o r example, a  expressed diabetic  illustrated  behaviour.  i s a v a s t amount o f l i t e r a t u r e  to o f f e r  Included,  body o f r e s e a r c h  experiences  have c o n c e n t r a t e d  they  t o be c o m p l i a n t  were made f o r t h e i r  has f o r them  study,  than the  i n teachers' a b i l i t i e s  an e x c i t i n g  people's  experiences  an  of t h e i r  but not f o r a s i b l i n g ' s  describes  studies  lives  that concerns f o r  a r e much b r o a d e r  parents' concerns  allowances  Presently,  there  children  From r e s u l t s  regimes,  behaviour  the  (1987) i n d i c a t e d  l a c k of c o n f i d e n c e  special  daily  1987).  Hodges and P a r k e r  that  of t h e i r  18  with diabetes  belongs  K l e i n m a n e t a l . (1978)  consists  of the i n d i v i d u a l ' s  and c u l t u r a l  r e a c t i o n s t o d i s e a s e or  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  clients  shoulder  tremendous r e s p o n s i b i l i t y  19 own t r e a t m e n t and  for their  c a r e , it- i s i m p o r t a n t f o r h e a l t h p r o f e s s i o n a l s t o u n d e r s t a n d how s o c i a l  and c u l t u r a l  factors  influence  clients'  illness  experiences. Canada Chinese  i s made up o f numerous c u l t u r a l  population  represents  a rich  to the Chinese people's d i s t i n c t backgrounds, t h e i r  explanatory  dissimilar  of health  health  to that  care  example, t h e C h i n e s e may a s s i g n health  and i l l n e s s  In o r d e r with these  people,  systems of h e a l t h We a r e f a c e d become c o n s u m e r s approximately annually  of t h i s  health  i n the western  ways o f s e e k i n g  professionals to  population's  explanatory  p r a c t i c e s and b e l i e f s , and  they a r e accustomed  i n t h e Western h e a l t h  to using.  care  system.  who have  Of t h e  i n Canada  Canada, 1 9 8 4 ) , an i n c r e a s i n g number a r e  Asians accounted  I n t h e d e c a d e a f t e r t h e war, A s i a However, by 1978-  f o r 43.8% o f a l l i m m i g r a n t s  Among t h e l a r g e  number o f A s i a n s ,  are  of Chinese descent.  Due t o t h e d i f f e r i n g  and  p r a c t i c e s of eastern  and w e s t e r n c u l t u r e s ,  Increasingly  help.  t o work c o l l a b o r a t i v e l y  l e s s t h a n 3% o f a l l i m m i g r a n t s .  professionals  For  d i f f e r e n t meanings t o  150,000 new i m m i g r a n t s who s e t t l e  Canada, 1 9 8 1 ) .  may be  further exploration. very  Due  and c u l t u r a l  w i t h an i n c r e a s i n g number o f C h i n e s e  countries.  contributed 1981,  care  (Statistics  from A s i a n  social,  i t i s essential for health  their  The  culture.  models o f i l l n e s s  professionals  have a c l e a r u n d e r s t a n d i n g models o f i l l n e s s ,  family,  and have v a r i e d  for health  and d i v e r s e  professionals  s y s t e m , and w a r r a n t  groups.  from the Western h e a l t h aware o f t h e i r  care  (Statistics a  majority  values,  beliefs,  health  system are  responsibilities  t o provide  programs t h a t  f o c u s on  the c a r e of people  20 ethnic  from d i f f e r e n t  groups. Much l i t e r a t u r e  has  been w r i t t e n  have c o n c e n t r a t e d on e x a m i n i n g a Chinese  Gale,  1975;  Other  studies  Singapore  (Kleinman,  R o s e n t h a l , 1981; have  studies  health  h e a l t h and  of h e a l t h  research s t i l l mainstream researchers  t o e x p l o r e how  is lacking.  professionals  diabetes  for this  them.  This type  professionals and  and  and  1984).  Chinese  Chinese  Yu and  Chinese  Wu,  An  to discover and  care that  acceptable for this population.  of  a r e a of within  the  Ngin,  L i n , 1983).  with diabetes,  e x p e r i e n c e and  in this  also  in  Several  1985;  clients  society,  societies  concepts  ( G o u l d - M a r t i n and  population,  plan quality  Ng,  invaluable  care system.  of r e s e a r c h w i l l  i n China,  other  health practices.  Research  Western h e a l t h holds  i n C h i n a and  attempt  Chang, 1973;  within  R e s e a r c h e r s have a l s o made  s t u d i e s are  health  the c o n t e x t of Canadian illness  Lun,  i s the s t u d y of the Chinese  have made t h i s  Research  their  emerging  and  practices  f o r example,  Ho,  understand  Chinese  of the western  Campbell  within  and  Studies  Kunstadter, Alexander,  1984;  care  These  professionals  illness  Koo,  L i u , 1980).  (Kleinman e t a l . , 1975).  1981;  health  f o c u s e d on s t u d y i n g t r a d i t i o n a l  (Wang, 1983;  comparative  helping  Chinese  c o n t e x t , s t u d y i n g the Chinese,  Hong Kong, and  medicine  on t h e C h i n e s e .  area w i l l  manage  assist  t h e p e r c e i v e d meaning i t s implications  help  for  health  is culturally  sensitive  Two  A p p r o a c h e s t o the The  researcher  diabetes  and  be  as  given  diabetes  the  Two  for  general  clients  respond  review  of the  of  the  illness  of  living  Studies  the  the  to the  an  of  illness  event  about the  control  the  results, this  nature  diabetes,  the  event.  Researchers  who  medical  meanings  the  to the  how in a  outcome meaning  Popkin,  the  on  these  illness  than  focused  and  might  insulin  topics like  the  people's  that c l i e n t s  should  1986),  the  much  meaning  the  outcome  to  treat  effectively  include blood  test  Research  pathophysiology clinical  strictly  "noncompliant  of of  methods.  experiences  outcome of t h e  ( E t z w i l e r , 1980). as  diabetes  objective  subjective  on  labelled  on  dosages.  o f d i a b e t e s , and on  the  i n order  might  Event  studies paid  accumulating  clients data  Illness  been w r i t t e n on  have f o c u s e d  regimens  c o m p l y have been and  on  placed  have a l s o e m p h a s i z e d  (Caryl,  ways so  epidemiology  illness  not  on  the  D a t a were c o l l e c t e d  centered  of  About  approach t h a t  results,  e m p h a s i s was  prescribed  will  identified  focused  diabetes,  Objective  Little the  have been  Facts  concentrated  disease. test  with  The  or d e v i s e  has  the  21  study  explanations  studies attended  outcome o f  disease.  urine  to  to conceptualize  approach  Objective  of c l i e n t s  event.  disease,  event  One  Other  use  a v o l u m i n o u s amount has  illness  the  Further  Event  illness.  of t h e  data  illness  t h a t F o c u s on  study  i t is important  chose to e x p l o r e  approaches authors  event.  with  Illness  individuals.  more a t t e n t i o n t o t h e  the  researcher  literature.  Although and  h a s e m p h a s i s e d why  Chinese p o p u l a t i o n .  t o why  hold  C o n c e p t u a l i z a t i o n of the  comply  Those who  illness with did  diabetics"  " d e f a u l t e r s " (Hammersly,  Holland,  22 Walford,  and  Thorn,  Toobert,  Wilson,  interest  was  and  have been a s k e d  clients  acquire  been p r e s c r i b e d .  patients"  The  Clients'  p e r t a i n i n g to diabetes  s e l f - c a r e and  has  author's  medical  list  regimens.  p u r p o s e and  be  the  the  intervention" studies  provider's  illness care,  nature  i s kept  studies  own  care  have n o t  through  i n the  care,  the  event  psychosocial  help  to  who  the  have  emphasis have  on  on  have a l s o a c k n o w l e d g e d v a r i a b l e s and  their  favourable. ways  that  movement t o w a r d s  the  ways  to  the self-  health  involvement However,  process  in these  clients  go  illness.  a holistic  focused  is  r e g i m e n s so  1986).  own  underlying  i s to devise  clients'  to explore  educator's  prescribed  identified  Kappell,  for  education  therefore,  increase  1986;  attempted  recent  of  illness  With the  one  criteria  assumption  outcome of  illnesses  in  education  i s t h a t adherence t o the  management o f t h e i r  researchers  Illness  other  (Weiss,  studies  With the  The  strong  to  reflected  f o r the  p.128).  under c o n t r o l .  on  adhering  "Among t h e  comply to p r e s c r i b e d m e d i c a l  p r o f e s s i o n a l s may their  and  for a d i a b e t i c  support  (Mazze, 1986,  of t h i s  clients  not  successfully attain  be  management.  health professional's role,  help  i n p u t might  However, some  p a t i e n t ' s understanding  regimens guarantees t h a t The  T h i s may  of e n t r y c r i t e r i a  p r o g r a m t o enhance c l i e n t entry should  main  and  also placed  self-management.  by a c q u i r i n g h e a l t h e d u c a t i o n  prescribed  researchers'  health education,  health professionals stressed that c l i e n t s self-care  (Ary,  for.  Literature on  "nonadherent  Glasgow, 1 9 8 6 ) .  to help  a d h e r e t o what had  emphasis  1 9 8 5 ) , or  the the  effects  view of  outcome o f  health the  r e l a t i o n s h i p s among on  biologic  outcomes.  For  example,  strong  control  patients with  they  diabetes  Taylor,  identified  psychosocial  mechanisms.  between h e a l t h  Drachman, and  they found  adjustment They  Other  beliefs  studies  and  1979).  for health  psychological  Influence  a i d of p r e d e s i g n e d  although s i g n i f i c a n t management and studies  provided  variables  were  psychosocial  treatment a  care,  studies  relationships treatment Other  the  outcome o f  explored  psychological  et a l . , 1979). validated scales.  as  emphasis  and  on  Hence,  psychosocial lives.  to elucidate  McMurry, 1985;  their  effects  r e l a t i o n s h i p between h e a l t h  o b j e c t i v e measures u s i n g  view  of  the  Daschner,  diabetes  perceptions  the  these  a holistic  v a r i a b l e s and  of c l i e n t s '  illness.  influence  a f f e c t e d people's  recent  the  scales.  a l l the  v a r i a b l e s i n p a t i e n t s with  Aspects  through  the  Haefner,  were i d e n t i f i e d ,  have been c o n d u c t e d  (Peyrot  variables  were o b j e c t i v e l y  t o o l s or  p i c t u r e of how  among p s y c h o s o c i a l  outcomes  studies  the  the  valuable  variables that  illness  i n t e r r e l a t e d and  In summary, w i t h health  of  limited  and  professionals particular  t h e s e s t u d i e s , however, s u b j e c t i v e d a t a the  a  suggested  explored  These s t u d i e s are  23  and  ( B e c k e r , Maiman, K i r s c h t ,  factors that  measured w i t h  and  (1985),  adjustment a f f e c t s c o n t r o l through both behavioural  relationship  In  McMurry's s t u d y  in insulin-treated adults.  psychophysiological  in  and  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  diabetic that  i n Peyrot  were,  predesigned  on  1986). beliefs  (Becker however, tools  or  24 Studies In about  that  Attend  t o the Meaning o f L i v i n g  c o n t r a s t t o t h e r e s e a r c h w h i c h examined  the i l l n e s s  experience, other  t h e meaning o f l i v i n g attempted  w i t h an i l l n e s s .  to obtain a f u l l  account  individuals.  These a c c o u n t s  t h e most o r i g i n a l Although explore  sources  there  Studies of t h i s  of people's  - the c l i e n t s  t h e meaning o f l i v i n g  examined p e o p l e ' s  contributions (1976),  were e l i c i t e d  i s a scarcity  experiences  facts  nature  e x p e r i e n c e s as  had f o r t h e s e by r e s e a r c h e r s  from  themselves.  o f s t u d i e s on d i a b e t e s  with the i l l n e s s ,  to understanding  of i l l n e s s  and i n s i g h t .  who has g i v e n e x t e n s i v e a c c o u n t s  a collagen illness,  objective  r e s e a r c h has a t t e n d e d t o  r e s e a r c h e r s e x p l o r e d t h e meaning t h e i l l n e s s  has  w i t h an I l l n e s s  that  r e s e a r c h which  has made Norman  immense  Cousins  of h l 3 experience  has p r o v i d e d t r e m e n d o u s  Insight  with  to health  profess ionals. Few of The  publications  the i l l n e s s  an  experience,  work o f D o r o t h e a  educator,  as w e l l  exception.  in several  have had a s t h e i r  Sims  from  the i n d i v i d u a l ' s perspective.  (1986, 1 9 8 0 ) , a d i a b e t i c  as a d i a b e t i c  She has s h a r e d  publications.  focus thee x p l o r a t i o n  health  f o r the past t h i r t y  her s e l f - p e r c e p t i o n s  I n one a c c o u n t ,  t h e gap between t h e h e a l t h p r o f e s s i o n a l s '  Sims  years, i s of diabetes  (1986) d e s c r i b e d  p e r c e p t i o n s and h e r  own e x p e r i e n c e . To  the health professional,  minor  many o f my n e u r o p a t h i e s a r e  because they a r e not l i f e - t h r e a t e n i n g .  however,  i t i s n o t a minor problem  F o r me,  t o be c a u g h t  with  uncontrollable  d i a r r h e a i n an o v e r c r o w d e d a i r p o r t .  impaired  sense  of balance  in  weather  rough  i s life-threatening  or i n a s l i p p e r y  bathtub,  An  on a s a i l b o a t  (p.123)  Studies illness at  that  attend  also provide  t o t h e meaning o f l i v i n g  health  how p e o p l e manage t h e i r  daily  lives.  scarce,  A g a i n , as r e s e a r c h  other  Conrad studying  studies  a r e used  "noncompliance",  on t h i s  the context area  t o make t h i s  attempt  degree  of c o n t r o l  over  D o u g l a s and D r u s s of d e n i a l  their  their  medications  health  by e x a m i n i n g  treatment.  They i l l u s t r a t e d  In f a c t ,  the i l l n e s s  functions  f o r these p a t i e n t s .  exigencies  of d a i l y  over t h e i r  own  life,  and i t a l l o w e d  (1982b) s t u d i e d  construct  the context  the i l l n e s s  reactions to  organizing  them f r o m t h e  them t o r e g a i n  control  f a m i l i e s with  parents'  with  their  interaction.  They  management o f t h e r o u t i n e s t h e meaning c o n t e x t  particular family.  professionals  they demonstrated  experience  of everyday s o c i a l  must be u n d e r s t o o d w i t h i n that  s o c i a l and  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 .  families  for  with  postponed  important  I t sheltered  f a m i l i e s ' own p e r c e p t i o n s ,  that  who  the p a t i e n t s '  served  studying  out  some  care.  A n d e r s o n and Chung  in  to assert  how v a r i o u s  influenced  illness.  patients'  two p a t i e n t s  medical  determinants  that  t o understand the  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  chronically  He a r g u e d  conditions.  serious  experiential  approach t o  p r o f e s s i o n a l s as a l t e r i n g  (1987), attempted  of i l l n e s s  of t h e i r  point.  regimens, a c t u a l l y represented  to regulate  look  of diabetes i s  f o r people with e p i l e p s y .  l a b e l l e d by h e a l t h  medical  active  nature  within  (1985) employed a p a t i e n t - c e n t e r e d  compliance  prescribed  p r o f e s s i o n a l s w i t h a renewed illness  25  w i t h an  should  attempt  They proposed to gain  By  how children pointed  of everyday  life  of the sickness  that  health  an u n d e r s t a n d i n g  of the  parents*  explanatory  sickness  has  clients  on  their  view t h e i r  negotiate  models of lives.  sickness O n l y by  sickness  will  s t r a t e g i e s that are  and  the  taking  effect  i n t o account  p r o f e s s i o n a l s be  appropriate  able  to the  26 the  that  how  to  clients'  situation. In a n o t h e r how  cultural  study,  i n the  interviews  with  noted  f o r Chinese  issue,  nor  did  context  s u b g r o u p s of  the  keeping  c h i l d r e n content  their  as  the  white  " n o r m a l " and  children  and  top  other  children.  p r a c t i t i o n e r s to  and  understanding i s t o be  plays  stated,  only  can  patient's  that  managing d i a b e t e s  they  of the  focus are  Studies  manage d i a b e t e s  inside  " v i e w " o f how  decisions, decisions.  child  and  health  In  treated their  children  The  to the  situation  i f the  pointed family's  the  need  acceptable  Important  Negotiation,  nurse  sick  priorities  i f culturally  They emphasized  place  the  their  i n t o account a  they  not  d i f f e r e n c e s between  in providing care. take  was  were more i m p o r t a n t .  authors  their  as  understands  role they  the  perspective.  Studies  necessary.  take  provided.  negotiation  the  From  families,  P r o t e c t i n g the  f a m i l i e s interviewed  for  care  normalization  priority.  minimized  white  p r e s c r i b e d by  take  illustrated  of e v e r y d a y l i f e .  families,  treatments  (1982a)  ways i n w h i c h f a m i l i e s  C h i n e s e and  professionals  contrast,  Chung  f a c t o r s i n f l u e n c e d the  manage t r e a t m e n t s  that  A n d e r s o n and  and  on  the  scarce.  clients'  provide  clients  what c l i e n t s  clients  More r e s e a r c h  that e l i c i t will  process  with go  go  through  in this  in  area  is  on  how  perspectives  h e a l t h p r o f e s s i o n a l s with diabetes  through  make h e a l t h  i n making  Moreover, s t u d i e s of C h i n e s e  these  informants  with  an  diabetes  w i l l provide  cultural  factors  manage t h e i r  valuable  27 i n f o r m a t i o n on t h e ways i n w h i c h  i n f l u e n c e how C h i n e s e  c l i e n t s e x p e r i e n c e and  illness. Summary  In t h i s to  e x p l a i n why  informants diabetes  experience  represent  different In o r d e r this  Chinese  important  informants  explanatory to provide  cultural  models t h a n  i s one o f t h e c h r o n i c  informants  contributed  assign to their  acceptable  illness  care how  approach t o viewing  others attend  for individuals  each  a rich  source  experiences  of l i v i n g with  and  chose t o e l i c i t  o f t h e meaning o f t h e i r  illness  i n t h e management o f t h e i r  the researcher  offer  have  o f t a k i n g an o b j e c t i v e  t h e y went t h r o u g h  individuals  diabetes.  i n the treatment  i l l n e s s , the researcher  s u b j e c t i v e accounts  focus  to the  with  of the approaches  Instead  i s because  experiences.  There a r e s t u d i e s t h a t  t o g r e a t advancements  This  very  t o c o n c e p t u a l i z i n g the i l l n e s s  identified.  that support  the process  have been s t u d i e d because  w i t h 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  management o f d i a b e t e s .  informants'  c a r e on  Western h e a l t h p r o f e s s i o n a l s .  t h e outcome o f t h e i l l n e s s w h i l e  Studies  daily  g r o u p , h e a l t h p r o f e s s i o n a l s need t o l e a r n  have a l s o been  illness.  Chinese  I n d i v i d u a l s with  a p p r o p r i a t e and c u l t u r a l l y  meaning o f t h e i l l n e s s e v e n t  and  how  reviewed  a r i c h and d i v e r s e c u l t u r e and may p o s s e s s  Two g e n e r a l a p p r o a c h e s  on  to explore  has been  and manage d i a b e t e s .  Chinese  what meanings t h e y  event  literature  t h a t r e q u i r e s p a t i e n t s t o manage t h e i r  ongoing b a s i s .  they  to  i t was  background  have been s t u d i e d a s d i a b e t e s  illnesses an  chapter,  of data  diabetes  believes that by s h a r i n g  i n the context  their of t h e i r  28 daily  lives.  experience  Moreover,  of i l l n e s s  and t h e p r o c e s s  illness  will  is  f o r them t o l i v e  like  care  that  o n l y by u n d e r s t a n d i n g  of t h e i r  to understand  what i t  w i t h d i a b e t e s and i n t u r n n e g o t i a t e t o them.  In t h e f o l l o w i n g c h a p t e r , t h e  researcher  will  informants  with diabetes experienced  illness.  o f management  h e a l t h p r o f e s s i o n a l s be a b l e  i s acceptable  people's  d e s c r i b e t h e m e t h o d o l o g y used  to explore  and managed  their  how  Chapter  29  3  METHODOLOGY The guided aimed in  phenomenological  the methodological  perspective of q u a l i t a t i v e approach  t o d e s c r i b e and e x p l a i n  the complexity  outlines of d a t a  human e x p e r i e n c e  of i t s c o n t e x t .  t h e methods t h a t forthis  t o the study.  The s t u d y  as i t i s l i v e d  The f o l l o w i n g  were used  research  discussion  forcollection  and a n a l y s i s  study.  subject selection The Field this  principle  and Morse study.  were b a s e d  data  possible.  t o give data  that are  and i n s i g h t .  (Morse, from  i n a western  explore,  used  and d a t a c o l l e c t i o n  ceased  d i d n o t have g a p s , made s e n s e , and  1986).  The sample p o p u l a t i o n was  t h e Home Care  Canadian  Criteria criteria  The need t o f u r t h e r  Sampling  were c o m p l e t e ,  by r e f e r r a l  department  were t h a t  for selection  the emerging t h e o r y a l s o determined the  of t h e sample.  been c o n f i r m e d  The  criteria  i n o r d e r t o maximize o p p o r t u n i t i e s t o o b t a i n t h e  or r e f u t e  when t h e d a t a  obtained  sampling,  o f t h e sample i n  i n f o r m a n t s who were most k n o w l e d g e a b l e and r e c e p t i v e  selection  had  the s e l e c t i o n  a s d e s c r i b e d by  and c o n t r i b u t e t o u n d e r s t a n d i n g  insightful  confirm,  guided  sampling,  on t h e i n f o r m a n t s ' a b i l i t y  were s e l e c t e d most  (1985),  In t h e o r e t i c a l  representative Ideally,  of t h e o r e t i c a l  department  of a health  city.  for Selection  in selecting  informants  forthis  study  the informant:-  1. was aged  over  forty.  2. had been d i a g n o s e d more t h a n  with  s i x months.  late  onset d i a b e t e s  (Type  II)  for  30 3.  was  undergoing  4.  is a first  5.  had  the  insulin  generation  ability  treatment Chinese  for diabetes  at  home.  i n Canada.  t o communicate  i n Cantonese/  Mandarin/  and/or E n g l i s h . 6.  lived  within close proximity  of G r e a t e r  Vancouver.  Rationale The  r a t i o n a l e given  diagnosed I and and  with  late  on  daily  Informants with because  t h e y may  stage  provide  past  the  was  of b o t h  onset  lives.  has  indicated a  was  because  the  f o r t y years  onset  v i a the  this  in their  low  of  research  consultant  may  differ.  as  they at  a  would  clients  lifestyles.  manage Moreover,  1982).  Informants  s i x months were c h o s e n who  as  were " e x p e r t s "  forty  in  were s e l e c t e d after  age  1982). of  Informants  Informants meeting  western Canadian c i t y . accompanied  group  i s g e n e r a l l y found  Home C a r e d i v i s i o n  proposal  Type  treatment,  lifestyles  how  (Jarrett,  f o r more t h a n  of d i a b e t e s  both  i n c i d e n c e r a t e o f Type I  population  Recruitment  place  on  I n d i v i d u a l s aged o v e r  (Harris,  Recruitment  in their  looking for informants  experience.  onset,  of d i a b e t e s  i n f o r m a t i o n on  research  II d i a b e t e s  not  were  (Type I I ) were s e l e c t e d  Studies  adapt changes  Chinese  I I ) but  who  adjustment d i f f i c u l t i e s  and  researcher  types  compulsory changes  in their  i n the  (Type  diabetes  experience  informants  because the  illness  Type  their  diabetes  especially valuable  diabetes with  life  late  face sudden, y e t  their  onset  I I , or Type I a l o n e ,  impact  later  for selecting  The  by a of  the  stated c r i t e r i a  of a h e a l t h department  researcher  letter  the  of  submitted  copies  introduction to  h e a l t h department  took  in a of  her  the  t o seek e n t r y  to  31 the agency.  Upon a g e n c y a p p r o v a l , t h e r e s e a r c h e r a r r a n g e d t o  meet w i t h Home C a r e  staff  from t h r e e h e a l t h u n i t s w i t h i n t h e  c i t y a n d i n t r o d u c e d t h e s t u d y t o them. a s Home C a r e for  the study,  nutritionist especially she of  staff  encountered  they mentioned  helpful.  people  contacted  i n d i v i d u a l s who met t h e c r i t e r i a t h e s t u d y t o them,  b e l o n g i n g t o t h e Home C a r e  had worked w i t h these  F o l l o w i n g the meeting,  d e p a r t m e n t was  She had r e c o r d s o f a l l d i a b e t i c i n t h e p a s t two y e a r s .  who f i t t h e c r i t e r i a  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  interested  to  People call  who had q u e s t i o n s a b o u t  the researcher.  the r e s e a r c h e r a r r a n g e d Theoretical  sampling  f o r the s t u d y and  in participating  determined  All  spoke t h e Cantonese d i a l e c t ,  one to  o f them u s e d express All  Eight  spoke  homes.  for the study.  with nine Chinese  insulin  informants with  treatment  of the Chinese while  fluent  late a t home.  to ninety years o l d .  during the Interviews.  them s p o k e t h e T o i s a n d i a l e c t  Two c l i e n t s  encouraged  of informants  from s i x t y - n i n e  i n f o r m a n t s spoke C h i n e s e  dialect.  Appendix  in their  a n d two m a l e s ) who were d i a g n o s e d  ages ranged  i n the  (see  t h e s t u d y were  t h e sample s i z e  o n s e t d i a b e t e s a n d were u n d e r g o i n g Informants'  form  f o r an i n i t i a l v i s i t  I n t e r v i e w s were c o n d u c t e d females  a -list  Upon t h e i n f o r m a n t s ' w r i t t e n c o n s e n t ,  Characteristics  (seven  clients  She c o m p i l e d  s t u d y were g i v e n a n i n f o r m a t i o n and c o n s e n t A).  one  Three of  language,  five  one s p o k e t h e S e k k e i C a n t o n e s e a n d E n g l i s h , and  a few words o f E n g l i s h  during the interviews  himself.  Informants  people  are f i r s t  were b o r n  g e n e r a t i o n immigrants  i n China  while  one was b o r n  i n Canada. i n India.  Prior  t o c o m i n g t o Canada,  four informants  three  in  Vietnam,  people  Hong  Kong,  have been  one  in  and  i n Canada f o r l e s s  one  than  i n Canada f o r t e n t o t w e n t y y e a r s , and  been  i n Canada All  informants  interviews. subsidized lived  resided  Seven of the housing  alone.  Two  units  were widows o r  widowers.  Monthly p e r month.  lived  Of  lived  lived  the nine  seven  informants  have  o t h e r two  have  of  the  i n governmentinformants, s i x spouses  of the  ranged  A l l i n f o r m a n t s were n o t w o r k i n g  interviews except  the  with t h e i r  with a son.  income f o r t h e  Four  years.  informants  Informants  one  India.  i n Vancouver a t the time  then.  c h i l d r e n while  in  32  i n China,  ten years, three  been  f o r more t h a n t h i r t y  resided  and  Informants  from  $400 t o $720  a t the time  f o r a ninety-year o l d person  who  of  the  volunteered  as a c o u n s e l l o r f o r s e n i o r s . Three less for  than  informants  ten years while  ten to f i f t e e n  diabetes,  had  With r e g a r d s Identified  have had  years.  One  been d i a g n o s e d  their  h e l p from both  their  one  folk  main s o u r c e  informants  one  t o the C h r i s t i a n Two  had  of h e l p .  regular help  S i x of the nine  d o c t o r s and  Western p r o f e s s i o n a l  five  Confuscianism.  also  a l l informants  doctors.  belonged  Informants  faith,  As  sought to  t o the B u d d h i s t and  claimed  another  that  from people  Western  the o t h e r t h r e e people  affiliation, belonged  utilized,  homemakers.  Chinese  p r o f e s s i o n a l doctors, while  i t diagnosed  with diabetes for forty-one years.  i n f o r m a n t s were r e c e i v i n g and  for  i n f o r m a n t , whose f a t h e r  f a m i l y d o c t o r as  community h e a l t h n u r s e s  o n l y from  diabetes diagnosed  o f them have had  to health care s e r v i c e s  Seven of the n i n e  sought  five  their  religious faith,  to  t h e y had  help  no  33 religious  affiliation. Data C o l l e c t i o n  As  data  collection  qualitative  research  overlapping  of both  collected  mostly  informants' informants  and a n a l y s i s  processes  Three  visit  requested  as she f e l t  throughout  w i t h each  t o h a v e no more  informant  in  the f i r s t  the study  after  were o b t a i n e d  by a s e r i e s  Kleinman*s c u l t u r a l sample  These q u e s t i o n s were used  informants questions  experienced were used  informants, The  Instrument constructed and as  used  the researcher how  first  constraints. data  to initiate  Using  t o guide  the  (see Appendix  to elicit  examination  informants*  of As  how these  interactions  with  asked.  o f t h e i n t e r v i e w s were g u i d e d  collection.  on t h e i n t e r a c t i o n s The  interactions  Initiated  informants  the  by t h e  The r e s e a r c h e r was t h e p r i m a r y  f o r data  based  one  to participate  formulated  as t o o l s  directed  primarily  responses.  the researcher.  explore  were  a n d managed d i a b e t e s .  and scope  one  was e m p l o y e d , w h e r e b y  n o t a l l q u e s t i o n s were n e c e s s a r i l y  depth  informants'  was u n a b l e  model as a framework  questions  e x p l a n a t o r y models, which  Only  of unstructured interviews.  system  trigger  five  i n f o r m a t i o n t o add t o what  i n t e r v i e w due t o time  interviewing technique  with  Interviews after  Another  were  interviews i n the  o f two i n f o r m a n t s ,  was a l r e a d y s a i d .  B).  Data  i n t e r v i e w s were conducted  no more  study,  temporal  the study.  o f two t o t h r e e  t h e r e was  Open  t h e r e was a  and 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 .  I n t e r v i e w was c o n d u c t e d informant  run concurrently i n  ( L o f l a n d , 1971),  i n a series  homes.  and A n a l y s i s  questions  experienced  Informants' between t h e i n this  accounts  were  informants  study  (see Appendix  took  place  B) t o  a n d managed d i a b e t e s .  The  informants'  researcher.  the  took  place  interplay the  by  Thus,  responded  The r e s e a r c h e r  data",  process  interplay  responses.  i t was e s p e c i a l l y  f o r theresearcher  informants' The  responses  crucial  recorded.  p r e f e r r e d language. Following  during  t o be e x t r e m e l y  questions, l e d  t o "get close t o  the research attentive  i nChinese a s t h i s  A l l i n t e r v i e w s were  the interviews, theresearcher  taped  i n t e r v i e w s t o E n g l i s h and had t h etapes  All  taped  m a t e r i a l s were t h e n  did  n o tappear used  The  interviews over  time  limit.  nine  researcher they  wanted  volunteered families.  This  told  that  longer.  spent  time  answered.  Often with  transcribed.  informants'  of a total  the i n i t i a l  t h e i n t e r v i e w s would  time  translated  was s i m i l a r  they  names  to the  o f twenty-one  with  after  Interviews,  last  sixty  informants  that  t o ninety  was o f t e n  the interviews,the  informants  t o attend  On a f e w o c c a s i o n s ,  t o show t h e r e s e a r c h e r  place  were n o t t o c o n s i d e r  Most o f t h e i n t e r v i e w s l a s t e d contact  tape-  The i n t e r v i e w s took  During  one hour, a l t h o u g h  was t h e  (1982a).  informants.  o f f o u r months.  minutes, although substantially  so that  c o n s i s t e d o f t h econtent  were  approximately a  on a n y t r a n s c r i p t s .  with  a period  informants  coded  b y A n d e r s o n a n d Chung  data  to the  1970).  the  method  where  e a c h movement a n d  I n the attempt  i n t e r v i e w s were c o n d u c t e d  informants'  This  between two p a r t n e r s ,  t o ask in-depth  (Filstead,  and responses  and t h eresearcher.  t o the informants'  continued  and responses by  o f quest-ions  may b e l i k e n e d t o a d a n c e  the informants'  the  an  between t h e informants  researcher  step.  34  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  t o questions  informants  photographs  of their  35 In elicit  the  I n i t i a l i n t e r v i e w s , the  i n f o r m a n t s ' d e s c r i p t i o n s of  managed  their  illnesses.  clarification  of meaning  descriptions,  and  informants capture  was  the  or  what  they  to  experienced  expansion  purposes.  the  attempted  and  i n t e r v i e w s were used  concepts,  done t h r o u g h o u t of  how  Subsequent  for validation  essence  researcher  of  the  Validation  with  interviews i n order  i t meant  for clients  for  to  to  live  with  diabetes. Field  notes  supplement data described  the  were a l s o w r i t t e n collected  interaction,  interviews  took  occasions,  informants  place  were t e r m i n a t e d w h e n i t was  from  and  had  the  enrich  the  data.  obtain  information, including of b i r t h  As  obtained,  the  experience  to guide  to get  some s e n s e  a of  more s l o w l y , and m e a n i n g was one  the  the  the  She  d e l i n e a t e d each The  o f maximum o p e n n e s s .  the  interviews At  times  the  attempt  to  a l s o used  age,  sex,  the  As  analysis  to  and  occurred  of  then time  were  description  This  was  done  informants read  method  transcripts  entire  whole.  attitude  and  phenomenological  analysis.  experience  a whole.  perceived.  Informants'  Giorgi's  of  was  the  several  stopped.  sheet  collection  examined  sense  after  notes  C).  data  researcher  managed d i a b e t e s as  was  Appendix  as  On  i n t e r v i e w s In an  demographic  throughout.  used  had  These  context  1985).  to  tape-recording again,  the  mentioned above, data  ( 1 9 7 5 ) was  get  A brief  (see  simultaneously  to  after  and  talking  tape-recorder  took  researcher  materials.  Morse,  resumed  d i f f i c u l t to begin notes  the  setting  and  researcher  place  taped  the  (Field  by  the  and  in  Afterwards,  entire  the  order  how  they  description  that a transition w i t h which  of  this  was  in done  transcripts  were coded  according  had been d e l i n e a t e d , t h e r e s e a r c h e r  units  tried  simply  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  within  t h e same a t t i t u d e  took  place  essential  that defined  as the researcher themes  This  framework  best  represented  36 After the natural  t o meanings d e l i n e a t e d .  into  synthesized  experienced  A last  step  and i n t e g r a t e d the analytic  t o organizing data  how c l i e n t s  as  the natural units  the units.  t h e form of a f i n a l  was c r u c i a l  t o state  framework.  i n a manner  a n d managed  that  their  diabetes. Ethics The  rights  following 1.  was o b t a i n e d  British  Behavioural  Columbia  Research and Other  Informed, obtained  5.  Committee  I n v o l v i n g Human S u b j e c t s t o  w r i t t e n consents before  be c o l l e c t e d ,  Informants  were  signed  to recruit  by informants  a n y i n t e r v i e w s were  the role  study,  refuse  f r o m the-Home C a r e d i v i s i o n o f  f o rinterviews.  the  any  i n the  Screening  In a western Canadian c i t y  were g i v e n  to  Sciences  Studies  Informants  to  protected  from the U n i v e r s i t y of  was o b t a i n e d  health department  informants  4.  were  the study.  Written approval a  Rights  manner.  conduct  3.  informants  Written approval  for  2.  of  a n d Human  conducted.  i n f o r m a t i o n on t h e p u r p o s e  of informants,  a n d how d a t a  would  free t o withdraw  t o answer any q u e s t i o n s  i n f o r m a t i o n on t a p e d  were  the type be  of  of data  handled.  from t h e study without  m a t e r i a l s , and/or  a t any time,  penalty,  to delete  t o stop the  interviews. 6.  Informants  were a d v i s e d  that non-participation i n the  37 study or 7.  would  care  n o t j e o p a r d i z e i n a n y way t h e  they receive.  Informants  were  transcripts would 8.  told  would  that a l l taped  be c o n f i d e n t i a l ,  n o t be i d e n t i f i e d  Informants of  the  report  treatment  who  study  and  i n any w r i t t e n  indicated would  materials  an i n t e r e s t  be c o n t a c t e d  that  and names  material.  i n the  after  results  a  final  i s written. Summary  The  methodology  phenomenological were  method  s e l e c t e d as they  experiences  with their  participated place  for this  regarded  as experts  own  illness.  In total,  analysis,  on t h e o t h e r  interpreted researcher Chapter  informants  Data c o l l e c t i o n  4.  data.  the study.  shared  both  constructed the accounts  Informants  i n sharing nine  and a n a l y s i s  Data  their  informants took  collection  with the researcher.  hand, depended  In essence,  on t h e  research.  were  i n the study.  on d a t a  was b a s e d  of q u a l i t a t i v e  c o n c u r r e n t l y throughout  depended  study  Data  o n how t h e r e s e a r c h e r  the informants that w i l l  and the  be p r e s e n t e d i n  38  Chapter 4 THE INFORMANTS' ACCOUNTS The informants' accounts are used in t h i s chapter to describe how  informants experienced and managed diabetes in  their day to day l i v e s .  Although i t i s recognized that each  informant offers a unique perspective and has experiences, central collected  unique  themes were i d e n t i f i e d from the data  that were common among the informants' descriptions.  The researcher, in this chapter, examined these shared aspects of the informants' experiences and t h e i r ways of managing diabetes in an attempt to gain a deeper understanding of the experience of l i v i n g with diabetes. When informants described how they experienced and managed diabetes in their day to day l i v e s , 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 d i s t i n c t 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 i l l n e s s as they progressed through each step of the decision-making process. model was  Subsequently, a decision-making  formulated based on the informants' decisions. This  decision-making model w i l l provide a framework for presenting the rest of the data in t h i s chapter.  39 View of Diabetes 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  When i n f o r m a n t s diabetes, of  their  how t h e y  remote  d e s c r i p t i o n s were s i t u a t e d  viewed  diabetes.  from medical  explanations about  the researcher  diabetes,  explored  i t became e v i d e n t played  experiences  and help-seeking  understanding clients  of t h e cause  role  of diabetes.  notions  perceived about t h e cause  i n determining  of diabetes  The  t o past  their  informants'  had great  These causes  were most o f t e n r e l a t e d  significant  impact  o n how  identified  by  experiences  seen as  by them.  informant  e x p l a i n e d t h a t she d i d n o t have d i a b e t e s  coming t o Canada. was  how i n f o r m a n t s  patterns.  made h e a l t h d e c i s i o n s .  informants  One  an Important  t h e cause  often  Diabetes  that their  of d i a b e t e s  within the context  These d e s c r i p t i o n s were  Cause o f As  a n d managed  70 y e a r s  before  I t was o n l y when s h e came t o C a n a d a when s h e  o l dand had d i f f i c u l t y  adapting  t o t h e s o i l and  4  water  that she g o t d i a b e t e s .  I=Informant R=Researcher I:  This  i s what  water  and s o i l  happened back  I think myself. i s not right  throughout  married,  my w h o l e  life.  Two t o t h r e e  I became v e r y  shakes,  because  water.  My m o t h e r  because  I drank  water  f o r me.  i ti s because t h e The same t h i n g  When I w a s y o u n g ,  w h e n I w a s a y o u n g woman, I w a s b r o u g h t  from t h e w e l l s .  cold  I think  sick.  I got  I was s h i v e r i n g a n d h a d  I was d r i n k i n g a d i f f e r e n t  said  that  a different  from t h e w e l l ,  months a f t e r  up on w a t e r  I must have g o t t e n type  and then  of water.  I drank  type of sick  I g r e w up on  a different  type  of  water.  mother  I even  said  mother.  As  That's  The d r i n k i n g  i s too  foods  I:  foods and  here  also,  water  like  Then your  event caused  I cannot  futher  water  of her diabetes t o the  deterioration  to avoid a l l  of her health.  So I a v o i d e d  s a l yeung choy  foods, then  (a type  what w i l l  will  a l l 'cold'  of vegetable)  happen?  get tired.  sleep at night.  My e y e s  I am v e r y get very  tired  tired,  dizzy.  informant related event.  had such  t h e cause  arms and f e e t  I feel  significant  The  chestnuts.  I:  Another  s h e i s my  i s different.  Is t o o ' c o l d ' .  I f you e a t those  and  water  In Canada, she proceeded  R:  now!  because  my  1  t o prevent  The w a t e r  c o u r s e , what  'cold .  being too 'cold'  •cold'  of  why I k n e w why I g o t d i a b e t e s when I  the informant attributed  water  a l l my h a i r J  must have been r i g h t  came h e r e . here  lost  t h e cause  of her i l l n e s s  According to her accounts,  severe  effects  to a  past  because the  on h e r e m o t i o n a l l y , t h e e v e n t  her diabetes.  R:  What i s y o u r  I:  I think  i t i s the insulin,  functioning in  understanding  making  has weakened.  the insulin.  of diabetes? no, i t i s t h e pancreas, i t s Therefore, i t has  As a r e s u l t ,  I have  difficulty t o take  injections. R:  So t h e p a n c r e a s '  function  I:  I t isn't  that  function  b u t b e c a u s e my e m o t i o n s  i tcan't  has  function  suddenly,  my b l o o d  who  i n the United States,  lived  ceased?  sugar  anymore.  I t can  s t i l l  were n o t w e l l and  went up.  I t w a s b e c a u s e my s o n  he d i e d .  He w a s  around  41 50  plus.  When h e d i e d ,  guess that It  informant  person's I:  very  continued  to explain  For a person,  eat.  heart.  she pointed  Your  out that  optimistic  v i e w on l i f e .  the death  heart  I thought when  to live  beat  want t o  will  affect  faster. her diabetes, the  p e a c e f u l l y and adopt an  She d e s c r i b e d  how s h e f i n a l l y  dealt  think  t o myself,  " L e t i tbe!  So I t r i e d more  weakened h e a l t h  that  the reason  care  of her health  other  meet h i m  myself and  diabetes,  most o f them  to a period  of the illness,  conditions.  she has diabetes  when  of  time,  they  One i n f o r m a n t  i s because  when s h e was y o u n g e r .  weakened, she a c q u i r e d  my  optimistically.  how t h e y v i e w e d  occurrence  hurt  I will  t o comfort  the a c q u i s i t i o n of diabetes  to the actual  and i s over 50.  angry and s a d , i twould  I die."  informants described  experienced  will  your  n o t want t o e a t , r i g h t ?  t o myself,"My son has died  make m y s e l f  associated  For example,  bad emotions caused  I keep on being  again  You would  bad, a l l h i s  of her son.  I thought  son."  I:  affect a  i fyou have a n y f e a r , t h a t  was d e t e r m i n e d  prior  be a f f e c t e d .  emotions a r e not w e l l , you wouldn't  informant  As  how e m o t i o n s  be a f f e c t e d .  i saffected.  Sometimes  your  If  went up.  when h i s e m o t i o n s  when h i s e m o t i o n s a r e v e r y  organs w i l l  When y o u r  I:  I  health.  stomach  with  a person,  sad.  sugar  bad, a l l h i s i n t e r n a l organs w i l l  internal  As  were v e r y  h a d some e f f e c t , a n d my b l o o d  was up t o 400 p l u s . . . F o r  are This  my e m o t i o n s  stated  she d i d not take  As h e r h e a l t h  was  diabetes.  I t ' s b e c a u s e my h e a l t h  i s not strong  enough.  I know  a b o u t my own b o d y , r i g h t ? nine  children,  Giving to  birth  w h e n I h a d my c h i l d r e n , I h a d  when I was y o u n g ,  I was  t o c h i l d r e n was l i k e  going  have a b o w e l movement.  like  other  piece  people.  of c l o t h  the  When o t h e r  t o wrap t h e i r  enough c l o t h e s exposed  I never  and stayed  to collect  heads.  firewood  and hay.  would  they  put a  wore be  I go t o  I never  rested,  I d i d everything.  s a y , "Oh, I'm n o t f e e l i n g  well  today."  I  d i d that.  R:  And y o u ' r e  I:  I feel  eat  rested,  B u t f o r me,  I  it.  relaxed  a t home s o t h e y w o u l d n ' t  go t o t h e f a r m a n d g r o w v e g e t a b l e s .  never  and  They a l s o  I  never  t o t h e bathroom  rested  people  t o t h e winds and t h e s u n .  fields  energetic.  saying  weaker  your  now.  I overdid  health  i s n o t as good  When I w a s w o r k i n g  i tand I d i d n ' t  properly.  People  would  now?  then,  e v e n know.  eat chicken  I  overdid  And I  didn't  and wine,  but I  never d i d . R:  Would your  I:  that health  Yes! I  have something  I worked  have d i a b e t e s  now.  w a s y o u n g , my h e a l t h  Similarly, health I:  and t h a t ' s  another  contributed I f your not  what's happening t o  now?  Because  weaker  t o do w i t h  health  that  Because  i n the past,  I didn't  i s affected  now.  take  that's  care  why  when I  My h e a l t h i s  why.  informant t o her  like  stated  that  this  weakened  state of  diabetes.  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  know a b o u t i t .  R:  What d o y o u mean when y o u s a y y o u r  I:  The p e r s o n  i s not very  good.  health  I t i s very  i s weak? easy  to get  dizzy. As  we c a n s e e f r o m t h e d a t a , w h a t  the  cause  these and  o f d i a b e t e s were numerous and v a r i e d .  causes  had enormous  managed t h e i r  a deeper  informants attributed  impact  illness.  were a l s o  Moreover,  o n how i n f o r m a n t s e x p e r i e n c e d  In the researcher's attempt  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  informants  t o be  asked  to explain  to gain  diabetes,  how t h e i r d i a b e t e s  worked. Explanations One  informant reasoned  sugar  left  I:  that  When y o u h a v e s u g a r d i a b e t e s , left.  Your  being an a i r p l a n e He p r o c e e d e d  to explain  i s why he needed  without that  Another  i n f o r m a n t had rough  diabetes  condition  dispersed  sugar  i s a l l gone, It's just  like  fuel.  because  t o take sugar  reaction.  her d i a b e t i c  your  b o d y h a s no s u g a r .  insulin  as  d i a b e t e s o c c u r r e d w h e n t h e r e was n o  i n t h e body.  nothing  that  o f How D i a b e t e s W o r k e d  t h e b o d y h a d no s u g a r , cubes  and i t c h y  persisted,  when he h a d a n  skin.  She e x p l a i n e d  that  the "poison" from her  outwardly.  R:  What  i s your  understanding of diabetes?  I:  T h a t ' s when t h e p o i s o n i n y o u r  body i s d i s p e r s i n g and  coming o u t . She  stated  and  to suffer I:  that  "poison" caused  When y o u g e t t h a t  It  h e r t o have s k i n  problems  from other a i l m e n t s *  rough.  R:  this  feels  You b o i l  Then  thing  I have  so rough water  (poison),  to scratch  i t .  I have t o b o i l  t o burn  even  I t feels  water  i t , how c o m e ?  your  body  gets  so rough.  t o burn i t !  i:  Because  i t ' s rough,  I  control  could  Views As  and i t h u r t s . , . A f t e r  i t (the itching)  t i l l  of Diabetes as an  their  informants viewed bring  serious  important  views  consequences.  thing  informant emphasized  the  important thing I:  that  I:  You c a n ' t c u r e don't  need  that the  d i a b e t e s was a l w a y s i tunder  I don't  might  control.  present but  control.  know, b u t I w o u l d s a y  The o n l y c u r e  have sugar  i n your  i s that  temporarily  b l o o d , and you  wouldn't  t o take the medicine.  o n l y h a d t o make m i n o r R:  What e f f e c t s  I:  There's eat,  of i t s prognosis?  it.  informant voiced  that  d i a b e t e s was l o n g  adjustments as a r e s u l t  does d i a b e t e s have  n o t much e f f e c t .  I do n o t d a r e  term,  but she  of the i l l n e s s .  on you?  The o n l y t h i n g  i s that  when I  t o e a t t o o much.  R:  H a v e y o u e x p e r i e n c e d many c h a n g e s  I:  When my s o n s  o r my  o n l y change  i s that  my a p p e t i t e  i s satisfied,  to  Most  the worst.  What d o y o u t h i n k  Another  Informants stressed  (disease)!  R:  you  worked,  term disease that  t o d o was t o k e e p  I t ' s the worst it's  diabetes  t o do i s t o keep t h e d i a b e t e s under  One  then  night-time.  of d i a b e t e s as an i l l n e s s .  diabetes as a long  it,  Illness  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  they described  I burn  friends  from d i a b e t e s ?  go o u t f o r l u n c h w i t h  I don't  dare  me, t h e  t o e a t t o o much.  I am c o n t e n t e d .  I don't  Once dare  e a t t o o much.  R:  What d o y o u t h i n k  I:  I think blood  your  diabetes i s like?  the diabetes i s long  sugar  i s not too high,  term. then  But as long as the i tdoesn't  matter.  45 One  friend  for  30  with Although  years.  your  t h a t may  effects  they  determine  how  of  accordance I:  I:  been  is a  they  few  Urine  obvious  h e a v i l y on  blood  i n your  like  Test  i s not  inner  What do  you  urine a  I s t i l l  cannot  your  mean b y  then  urine  Informants  or  test  diabetes  for  informants,  I:  What I  you  results  in  can  s t i l l  being  i t is  that  not  controli t .  a l l clean  now.  test  i t . and  When d i a b e t e s  the  strip  have d i a b e t e s ,  is a l l  to test  then  the  i s c l e a n , then  urine  strip you  often determined and  governed  the  the types  s e v e r i t y of of  things  eat.  you  f e a r most about  f e a r most  too  diabetes  being  anything,  the  What do  you  about  I t i s a disease  I f i t i s heavy,  then  to  results.  thing.  I f your diabetes  fact,  R:  test  tests  talked  "light",  from  that?  urine  show i t . . . I f green.  good  c l e a n a l l of  the  see  term  Results  and/or  "heavy",  organs.  t a l k e d about  would  careful  p h y s i c a l symptoms  blood  were d o i n g .  If i t is light,  wouldn't  same  experienced  and/or  turns  be  long  with  will  the  have t o  These d e s c r i p t i o n s were used  is  it's  that diabetes  and/or  words  (diabetes)  informants  has  diabetes.  clean,  in  disease  illness.  relied  It  You  t h i n g i s you  i n Blood  using  good. R:  only  w e l l they  illness  "clean"  The  experienced  diabetes,  their  her  admitted  from the  Informants  that  b r i n g serious consequences,  Trust As  me  diet.  informants  illness few  told  i s that  deep, then  diabetes?  I will  I will  die.  die  from diabetes.  I f the  disease  gets  If to  that  you R:  colour  (points  wouldn't  I:  determine  the  test  results  t o eat  those  Another  informant  results  directed  determined R:  health  follow the I:  test  It's very good,  right  the  doctor  then Because  blood  and/or  results  y o u need says,  results  I fthe  test  occasions,  the  test  foods  o r not.  notl i s t e n t o  b u ty o u have t o you.  test  are  bad,  Why  are  results are  for  results  dictated  the  then you are do t h a t .  that  right not eating  Sometimes  is not right  myself  t o get  and t h e i r  t o be s o c l o s e l y  results  you,  I wouldn't  urine  tell  blood  g a v e me s o m e t h i n g  informants'  for  results  "right"  A l l doctors  were p e r c e i v e d  I:  then  so important?  results  things.  test  So t h e n ,  y o u i f y o u have been e a t i n g  conditions  were  that  I make s o m e m e d i c i n e  the  test  not right  The t e s t  the  test  results  I fthe  the  are  how b l o o d  time  important.  i t tells  things.  bottle),  things.  Western doctor  what the  blood  on a  on b l o o d  show.  behaviours.  last  the  that  will  s h e was e a t i n g  You mentioned everything  your e l y  things  illustrated  whether  colour  what t o d o .  i f y o ueat  continue  blue  many t i m e s ,  Sometimes blood  a  be c u r e d .  I t seems l i k e to  to  f o r me,  better.  health  associated,  how w e l l  if  the  on  informants  feeling. Now I d o n ' t sugar) has  feel  like  i s up, I f e e l  gone u p t o 200!  eating. that  Once I l e a r n t  I'm s i c k .  It usually  never  gone up t o 200!  That's  don't  know w h a t t o d o now.  i t  I t (blood  i s about  80.  (blood sugar)  I have  w h y I am v e r y a f r a i d .  I  47  R:  I t seems l i k e determining  I:  about  illustrated, urine  health  conditions. test  professionals understand these  some  others  lives.  Many  informants  R:  I:  close  attention to  with  mean a n d h e l p  them  health  diabetes interpret  on  Informants' minor  Uves  adjustments  i n their  how d i a b e t e s  informants  expressed  generalized discomforts  informant  tired  i n their  t a l k e d about  she has had  I am v e r y  now!  very  tired,  not  feel  g o o d , a n d my  often  associated from  I cannot  and I f e e l  their  as a r e s u l t  a general  head  sleep  dizzy.  and  of  state of  at night.  My  inner  l a g backwards while  I am  My  organs  h a s no s t r e n g t h .  My  eyes do  head  sitting.  the s w e l l i n g of her feet t o "poison"  being  diabetes.  what  i s the relationship  feet  and  That  s w e l l i n g was a l l b e c a u s e  between  the s w e l l i n g of your  diabetes?  That  now t h a t  lives  affected  diabetes.  get  out.  and determine  i n detail  since  dispersed  blood  described  One  Another  such  individuals  experienced  diabetes.  will  used  behaviours  paid  that  of Diabetes  of inconveniences  I:  often  Once I  even g e t up.  h e a l t h d e c i s i o n s on them,  results  complained  weakness  health  either.  accurately.  Effects  lives,  sugar i n  I couldn't  diabetes  people  ensure  what t h e s e  sugar),  with  and based  should  results  Although  i t (blood  Since  blood  140 i s n o t t o o h i g h  tests to direct  results  on your  are?  informants  and/or  these  how y o u  85 i s n o t t o o h i g h . learnt  As  you r e l y  s w e l l i n g went  things  are taken  that  stuff  on f o r a whole care o f .  was d i s p e r s i n g year!  It's  only  in  another  cause be  instance,  the informant stated  o f hern o tbeing  able  i n c r e a s i n g l y dependent I:  I feel all  on others  so uncomfortable.  because  then  t o walk.  o f the  diabetes.  I t seems  I:  Yes. Diabetes  caused  walk... Before,  I was a b l e  can't  like  diabetes  do t h i n g s  of theinformants,  diabetes,  described  amputation  of his  adjustments I:  help. o f what?  It's  I f I have no d i a b e t e s ,  my l e g s c a n w a l k , a n d I ' d b e s o h a p p y . affects  Of c o u r s e life.  Now I d o n ' t  I t ' s troublesome  change  l e g amputated  i nh i s  i norder  life.  as a result of  Following the  j o b a n d made  t o remain  numerous  active.  when y o u l o s e a l e g , y o u c a n n o t  Everything  now b e c a u s e  myself.  l e g , he q u i t h i s  i nh i s l i f e  ways.  t o do anything.  who h a d h i s  the  y o u i n many  me n o t t o b e a b l e t o  even have a good a p p e t i t e .  One  for  was t h e  s h e had t o  As a r e s u l t ,  I t ' s because  R:  I  diabetes  that  becomes  inconvenient.  lead a normal T h e r e ' s no  solution. R:  What c h a n g e s h a v e t h e r e  I:  No c h a n g e s .  Whatever  made m y s e l f .  changes  I cannot  t o move a r o u n d .  R:  You s t i l l  drive?  I:  Yes,  I'm s t i l l  out,  and i t ' s inconvenient this  down.  thing  I have  down, t h e n theinformants  there  are  driving.  But I cans t i l l  i t i s drive.  t o go up a n d down.  t o use crutches. t o use the  interviewed,  changes I  And i t ' s i n c o n v e n i e n t  (points t o h i s walker)  I need  are  be a s a c t i v e b e c a u s e  difficult  use  For  b e e n a t home?  they  t o help  And a f t e r  t ogo I can't me g o  I have  gone  walker. had unique  explanations  49 for  the  cause  Although  some  described though long  their  the  term  Illness  informants major  informants  results was  of  impact  diabetes  diabetes  their  energy  were s a t i s f a c t o r y .  making  how  experienced  viewed  effects,  and  The  h e a l t h d e c i s i o n s so  their  minor had  to  their  a serious  Even  illness  on  primary  concern  with  illness  was  the  others  lives.  focused  that  worked.  adjustments,  on  be  diabetes  ensuring  that  with test  diabetes kept  under  control. Making Within described Central how in  the  how  context  they  Health  of  how  experienced  themes t h a t emerged  informants seeking  status,  accounts,  these  went t h r o u g h  how  The  they  and  these  researcher  did with  then  them t o  of  informants  everyday  distinction  evaluation  of  evaluated  between b e i n g  h e a l t h s t a t u s then  what h e a l t h c a r e  the  resources  they  "sick"  would  informants* model.  experienced  that a  first  and  and  "not  help  step  their  health status,  Informants  seek  This  informants  to evaluate  their  helped  and  life.  expressed  i n m a k i n g h e a l t h d e c i s i o n s was When t h e y  own  process they  health  information  synthesized  the  represents  model,  status.  their  and  on  their  the  2,  Within  made t h e  e v a l u a t i o n of  on  diabetes  based  a decision-making  context  health  identified,  relating  i n the  took  management o f  i n making h e a l t h d e c i s i o n s as  this  illness.  formulated  in Figure  informants  d e s c r i p t i o n s centered  formulated  managed d i a b e t e s  they  diabetes,  managed t h e i r  what t h e y  themes, w h i l e  whole e x p e r i e n c e , shown  used,  and  management s c h e m e s .  model, as  from  viewed  included their  they  resources,  integrated  and  Themes t h a t w e r e  resources  from the  they  made d e c i s i o n s i n t h e  help.  informants'  Decisions  sick".  they The  determine  from.  Using  Kleinman's c u l t u r a l framework, t h e resources popular  researcher  (family, social  health care help-seeking  u s e d by  being  the  Based  t h e y managed w i t h On  the  other  "sick"  proceeded  this  researcher  on  or  The  from both  t o manage w i t h  help  a p a t t e r n of  p a t t e r n of  help-seeking  informants  they  from the  Subsequently,  informants  r e s o u r c e s , and  created The serve study.  i n t o a c t i o n as  Finally, they  decision-making  as an  they  put  will  be  folk  domains. informants  folk,  and/or  collected  what t h e y own  from  treatment have  the data  2  will  for  chapter,  process,  further discussed at  data  illness.  in Figure  o r g a n i z i n g framework t o p r e s e n t  In s u b s e q u e n t s e c t i o n s i n t h i s  informants,  sick",  information  illustrated  each s t e p of the d e c i s i o n - m a k i n g  "not  created a preferred  treated their  model  and  popular,  these  f o r themselves.  defined  were " s i c k " ,  have c o n s u l t e d , a n a l y z e d  regime  being  popular  from domains t h e y health care  folk  sick".  the  i f they decided  p r o f e s s i o n a l domains.  professional,  identified  whether  "not  care  c o n c e p t u a l i z a t i o n of  d e f i n e d t h e m s e l v e s as  help  hand,  on  informants.  When i n f o r m a n t s  health  n e t w o r k , c o m m u n i t y ) , and  depended, t o a l a r g e e x t e n t , t h e m s e l v e s as  conceptual  t h r e e domains: the  healers).  resources,  as a  c o n c e p t u a l i z e d these  as d i v i d e d i n t o  (nonprofessional  (1978)  s y s t e m model  as d e s c r i b e d length.  by  this  HEALTH CURE RESOURCES  INFORMANTS' ANALYSIS OF| INFORMANTS' INFORMANTS'  INFORMANTS  EVALUATION OF HEALTH STATUS  INFORMATION  CREATION  INFORMATION  FROM  OF OWN  COLLECTING  HEALTH  TREATMENT  CARE RESOURCES  REGIME  Figure 2, Informants decision-making model f o r help-seeking, 1  HACTION  Evaluation A constant decision lives  sick". as  informants  was t o e v a l u a t e t h e i r  evaluation,  a n d t o whom t h e y  Informants  o f t e n equated  "not s i c k "  turned  being  with being  then Informants  t h e y were  "not w e l l " .  "comfortable",  "sick"  or they  themselves  to informants their  with being  u n h e a l t h y and  you a r e h e a l t h y . then  I f your  you a r e the place,  At that time,  informants  felt  "something's  wrong".  that  symptoms were e v i d e n t ,  as being  him  was felt  they d i d not  then  feel  informants  "sick".  o r when I v o m i t  a l l over  the place,  (doctor).  informants described themselves  sick"  when t h e r e w e r e no s i g n i f i c a n t  I:  I f there's nothing the matter to  go s e e t h e d o c t o r . . . I f  go  t o see him.  Some i n f o r m a n t s e m p h a s i z e d was a l a c k  there  "different",  dizzy,  hand,  when t h e y s e n s e d  They f e l t  When I f e e l I call  "sick"  w i t h them.  when p h y s i c a l  On t h e o t h e r  I:  or "not  healthy.  t h e y were  the matter  there  important  "sick"  you a r e unhealthy.  something  described  t h e y were  I f you have p a i n and aches a l l over  decided  Especially  i n their  a r e good, and you a r e not s i c k ,  healthy.  daily  f o r help.  I f y o u have no s i c k n e s s , t h e n spirits  I:  whether  i n their  i n d e t e r m i n i n g how t h e y managed  conditions  I:  h a d t o make  T h i s e v a l u a t i o n was e x t r e m e l y them  52  Status  health status,  they distinguished  i tguided  being  of Health  changes  i n their  w i t h my b o d y ,  nothing's  lives.  I don't  the matter,  t h a t when t h e y were  of physical  as "not  I  need don't  "not s i c k " ,  ailments.  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 ,  then  you a r e not s i c k .  If  you f e e l  dizzy  and t h i n g s l i k e  that,  53  then  i t i s not  good. Others live  said  t h a t when t h e y  a normal  I:  When  were  "not s i c k " ,  and o r d i n a r y k i n d of  I'm n o t s i c k ,  then  they  were a b l e t o  life.  I'm l i k e  ordinary people,  then  I'm n o t s i c k . R:  Would  I:  I t would  Still,  y o u s a y more? be l i k e  usual  times.  others described not "being  "spirits  a r e good".  energetic, I:  coped  This  well  with daily  demands, and e n j o y e d Say something,  life,  Before,  t h a t makes y o u happy.  boys and g i r l s .  Daytime,  to  that.  walk.  I like  described their  between being  themselves  I take  as being  hand,  sick"  when t h e y  where  they  informants  were a b l e  experienced  Informants' played  utlized health  life. your  children out  made a  when t h e y  Informants  sensed  symptoms were  described themselves  t o lead a r e l a t i v e l y  clear  a change present.  as "not  normal  f e w c h a n g e s a n d when t h e r e  life  was a n  o f p a i n and s u f f e r i n g . Choice  health  felt  enjoy  the l i t t l e  and "not s i c k " .  "sick"  their  somebody g o t a few  informants  h e a l t h s t a t u s o r when p h y s i c a l  On t h e o t h e r  sick"  "sick"  when  when t h e y  Keep e n e r g e t i c , go o u t s i d e .  distinction  absence  as a time  i s a p e r i o d o f time  From 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 ,  in  sick"  care  of Health  Care  Resources  e v a l u a t i o n of whether  an important resources  by informants professionals,  they  role  they  i n determining  utilized.  Health  included their  family,  Chinese  were  folk  "sick"  or "not  the type of care  resources  friends,  Western  d o c t o r s , and i n f o r m a t i o n  from the  a  books,  magazines, and newspaper  researcher  conceptual  into  three domains.  cultural  (1978)  model  and conceptualized h e a l t h care  These t h r e e domains  popular  (family,  social  54  as  resources  included:  network, community), and  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  between t h e i r health  care  resources,  sick",  they  informants  s t r e s s e d t h a t when t h e y  were t h e a u t h o r i t y were  In health  "sick",  they  m i g h t h a v e t o g i v e u p some o f t h e i r help  I:  from  Western h e a l t h  depending I:  flu  t o them  power a n d  i t ' s a l l up t o y o u what y o u then  y o u have t o  t e l l you.  (medications)  differed  when y o u a r e  I f y o u a r eh e a l t h y , y o u do n o t have t o (doctor and nurse)  and t h e f l u i sover,  (doctor  decision-making  they  a t hand.  you can stop  healthy again! listen  that  e l a b o r a t e d o n how d e c i s i o n - m a k i n g  on t h e s i t u a t i o n  Of c o u r s e  decision-making.  emphasized  I f you are unhealthy,  f o l l o w what t h ed o c t o r s informant  were  professionals.  I fyou a r ehealthy, then want t o d o .  Another  relationship  e v a l u a t i o n of h e a l t h s t a t u s and t h echoice of  I n c o n t r a s t , when t h e y  seek  system  As m e n t i o n e d ,  (nonprofessional healers). The  "not  Kleinman's  framework  professional, folk  used  articles.  and nurse)  say.  I would  anymore. stop doing  I f I had t h e what  they  I t a l l depends on what i s  happening. However, a n u n d e r l y i n g assumption whether  they  were  responsibility I:  I trust watch  "sick"  held by informants  or "nots i c k " ,  was on them t o t a k e  care  my d o c t o r , b u t I h a v e  theultimate of themselves.  t o be o n g u a r d .  f o r t h i n g s t h a t have sugar  i sthat  I have t o  i nthem, a n d a v o i d  them.  I have t o watch f o r t h e d i e t  on m y s e l f . rely Although  t o the d o c t o r , but you  on y o u r s e l f .  informants  t h e y were " s i c k " responsibility Not  You have t o l i s t e n  55 and r e l y  by m y s e l f ,  stated that decision-making  or "not s i c k " ,  t o take  care  they  still  of themselves  bore  differed  when  the ultimate  a t a l l times.  Sick  Informants  described that their  making c h a n g e d d e p e n d i n g sick". from  When i n f o r m a n t s  people  prevent  belonging  p a t t e r n of h e a l t h  on whether t h e y were " s i c k " were " n o t s i c k " ,  to the popular  s i c k n e s s and/or m a i n t a i n  Popular. sources  informants  used  w i t h i n the popular  diabetes.  Information  informants' relatives  used  own b e l i e f s ,  and f r i e n d s .  decision-  they  and f o l k  or "not  o f t e n sought  help  domains t o  health.  Information  from a v a r i e t y of  domain t o h e l p them manage m i g h t have o r i g i n a t e d  past experiences, Information  their  from  hearsay,  and/or  was a l s o d e r i v e d f r o m  books  on d i a b e t e s , newspaper, and m a g a z i n e s . One i n f o r m a n t  said  t h a t s h e 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 c o r n husks cooked w i t h c h i c k e n h e l p s t o maintain  low b l o o d  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 a s t h e newspaper, b o o k s , m a g a z i n e s , and b y I:  We saw i t ( i n f o r m a t i o n ) i n t h e n e w s p a p e r . the do.  Chinese  newspaper.  Some C h i n e s e  Sometimes t h e y t e l l  books and m a g a z i n e s t a l k  We  talk  people  about  talk  newspaper.  i t (information).  about c o r n husks.  o f t e n read  us what t o about  d i a b e t e s and t e a c h me what t o do...Some o t h e r also  hearsay.  people  F o r example,  many  I t ' s not o n l y from the  56  Another she  i n f o r m a n t , whose f a t h e r  learnt  from  diabetes.  These m e d i c i n e s  Many C h i n e s e  balance being  between  were t a k e n  between  informants  believed  " h o t " and " c o l d "  'buck k e i * ,  three days,  My f a t h e r  I would b o i l  taught  factors  i nthe  maintaining a  f a c t o r s was a p r e r e q u i s i t e t o  remedies  that  at their  common p r a c t i c e . included nests.  health  pancreas,  Another  popular  learnt  about  from s o u r c e s  media.  Other  One i n f o r m a n t another n o t good  age g r o u p .  selected  until  f o r the health  fins,  remedy was l i m e c o o k e d remedies  food  f o r making  sharks'  soup  and b i r d s '  with  chicken.  t h e y c o n s i d e r e d good  f a m i l y members, f r i e n d s , foods  for their  and t h e  t h e y knew were n o t good  i n general. that  he o v e r h e a r d  i n the h o s p i t a l  f o r the e l d e r l y .  that  To m a i n t a i n good  I a v o i d a l l s u g a r s , whether brown s u g a r . is still  Although better  a patient  telling  egg y o l k s and s a l t  f o o d s a s " d a n g e r o u s " and a v o i d e d  it  them  M a k i n g soup was a most  c o r n husks,  like  stated  patient  I  them...My o l d f a t h e r .  were g e n e r a l l y good  informants avoided  the e l d e r l y  I take  I would b o i l  Common i n g r e d i e n t s u s e d  pigs'  Informants  a pot.  informants a l s o  they believed  individuals  and e a t them.  me a l l t h i s .  When t h e y were " n o t s i c k " ,  C:  s i c k n e s s and  'hung j o ' , 'wong d o n g ' . . . E v e r y two o r  t h e r e a r e two b o w l s , t h e n  these  that  I o n l y know t o buy t h i n g s t o b o l l boil  for  t o manage h e r  t o prevent  " h o t " and " c o l d "  said  healthy.  C:  of  herbalist,  h i m how t o u s e h e r b a l m e d i c i n e  to achieve a balance body.  was a C h i n e s e  h e a l t h , he  labelled  them.  i t i s white,  y e l l o w , or  you can take a r t i f i c i a l  not t o take  were  t o o much o f i t .  sugar, And I  57  restrict  salt.  are dangerous  Sometimes t h i n g s l i k e  informants c o l l e c t e d  from a v a r i e t y o f s o u r c e s . included  family,  friends,  i n f o r m a t i o n from  of i n f o r m a t i o n , informants adopted  an a t t e m p t  to prevent  Folk. domain. persons that It  also  sought  identified  they consulted with  s e e i n g Chinese  folk  described  health  folk  folk  how h e r f r i e n d  practices in health.  d o c t o r s as t h e p r i m a r y domain.  Informants  d o c t o r s was t h e " r i g h t  thing  understanding e x i s t s  d o c t o r s and C h i n e s e  on t h e s e  i n f o r m a t i o n from the f o l k  in this  i s p e r c e i v e d t h a t mutual  Chinese  Based  s i c k n e s s and m a i n t a i n good  Informants  Informants  information  I n t h e p o p u l a r domain, s o u r c e s o f  n e w s p a p e r , b o o k s , m a g a z i n e s , and b y h e a r s a y . sources  they  also.  When t h e y were " n o t s i c k " ,  information  egg y o l k s ,  patients.  recommended  that  One  alleged  t o do".  between informant  she see a  Chinese  doctor. I:  Some f r i e n d s said,  recommended  I see a Chinese  "Because y o u come f r o m C h i n a , s e e i n g a  doctor In a d d i t i o n ,  i s the r i g h t  thing  many I n f o r m a n t s  doctors could relate stated  supported  the C h i n e s e . excess I:  the concept  people  Western d o c t o r s m o s t l y t e l l And good  Chinese,  It's better  folk  of h e a l t h .  w a t e r would  and i n t u r n ,  cold  cause  harm them.  you t o d r i n k c o l d  that  One  of "coldness" i st o  cold  t h e body, t h e h e a l t h ,  f o r them.  water.  seeing Chinese  concept  He a s s e r t e d t h a t d r i n k i n g  "coldness" i n Chinese  Chinese  as t h e y p e r c e i v e d these  to the Chinese  how i m p o r t a n t  They  t o do."  d o c t o r s when t h e y were " n o t s i c k "  informant  doctor.  water.  water n o t so  they d r i n k  boiled  58  Chinese like  folk  food r e s t r i c t i o n s  essential  I:  perceived t o understand  were r e g a r d e d  person  " h o t " and " c o l d "  h e a l t h f o r Chinese  people.  folk  s o t h e y may m a i n t a i n a  factors  doctors to balance  s a y you  w o u l d n ' t need t o have a n y f o o d r e s t r i c t i o n s . doctor  is different.  a r e some t h i n g s y o u c a n n o t In a d d i t i o n , folk  informants  t h e y were " n o t s i c k " . like  Again,  i n f o r m a t i o n from  to prevent I:  He would  tell  The you t h e r e  take.  voiced that  d o c t o r s t o h e l p them t a k e  Food  i n t h e body.  When y o u a s k t h e W e s t e r n d o c t o r , he would  Chinese  concepts  as a b s o l u t e l y  were o f t e n p r e s c r i b e d b y C h i n e s e  the i n d i v i d u a l  between  that  t o m a i n t a i n i n g good  restrictions suit  d o c t o r s were a l s o  I n f o r m a t i o n was s o u g h t  care of t h e i r  h e a l t h e v e n when  i n f o r m a t i o n from  the popular  from  the folk  domain,  domain, was f r e q u e n t l y s o u g h t  s i c k n e s s and m a i n t a i n h e a l t h .  So y o u t a k e  some C h i n e s e  medicine  t o take  care of  yourself. Informants  stated  domain b e c a u s e  that  they sought  they could r e l a t e  i n f o r m a t i o n from  with  folk  the folk  doctors better  with Western p r o f e s s i o n a l  doctors.  acknowledged  d o c t o r s have a deep u n d e r s t a n d i n g o f  Chinese from  that  concepts  the f o l k  prevent  Chinese  of h e a l t h .  Moreover,  than  informants  L i k e t h e p o p u l a r domain,  people  domain were f r e q u e n t l y c o n s u l t e d i n o r d e r t o  s i c k n e s s and m a i n t a i n h e a l t h .  Professional. system of care However, most professional t h e y would  Some i n f o r m a n t s  f o r continuous  used  the p r o f e s s i o n a l  monitoring of t h e i r  informants d i d not f e e l  comfortable  s y s t e m o f c a r e when t h e y were  "trouble"  health  professionals.  condition. u s i n g the  "not s i c k " ,  f o r fear  59  I:  I feel  that  should  y o u go t o s e e him.  ask  the doctor  him t o l i s t e n  i s busy,  o n l y when y o u a r e s i c k  I f you a r e not s i c k ,  ( t o the h e a r t ) here  s e l d o m do i t . B u t I f e e l  and y o u  and t h e r e , I  t h e d o c t o r s a r e v e r y b u s y , and  I would n o t want t o t r o u b l e them.  That's  n o t v e r y good  t o s e e h i m when y o u a r e n o t s i c k . Because not t r o u b l i n g  professionals  i n f o r m a n t s , some t r i e d I:  at great  That's  troublesome,  that.  People  really  feel  s i g n i f i c a n t to  lengths to avoid doing so.  and i t ' s n o t v e r y good  have work t o d o .  i t ' s necessary.  I can always c a l l  and  me t o t h e h o s p i t a l .  o f me t o do  I o n l y need h e l p when I  I f there  serious, send  was t h a t  that  i s something  c a r ( a m b u l a n c e ) t o come  I don't  like  t o bother  people. E v e n when i n f o r m a n t s were s l i g h t l y help  from  professionals  themselves. coped  One i n f o r m a n t  w i t h an i n s u l i n  I:  I told then  but t r i e d  myself  felt Only  to the r a d i o  I d i d not f e e l  a b i tbetter,  situation  It's like then  o f how s h e  i f I panicked,  up.  and I r e s t e d  programme. as d i z z y .  I quietly  laid  on my b e d .  I  And when I s l e p t And a t a b o u t  and I g o t up t o make some when I n f o r m a n t s  8:30, I cereal.  were f a c e d w i t h a  where t h e y c o u l d n o t cope a n y l o n g e r would  t h e y seek p r o f e s s i o n a l I:  the experience  g e t a l l mixed  my e y e s ,  under c i r c u m s t a n c e s  serious  t o cope w i t h t h e s i t u a t i o n  not t o p a n i c , because  t h e r e and c l o s e d  there,  t h e y d i d n o t seek  reaction.  my h e a r t w i l l  listened  shared  "sick",  this.  I tolerate  help. I f I can t o l e r a t e i t .  I t (the d i s c o m f o r t ) ,  I f I can't t o l e r a t e  any l o n g e r ,  60  then  I phone my s o n - i n - l a w ,  drives  her t o see her d o c t o r ) . . . I o n l y c a l l  definitely little It  sick",  domains. illness  c a n ' t cope anymore.  l o n g e r , I wouldn't c a l l  i s important  "not  to note,  they  Both  purposes.  i ta  when i n f o r m a n t s the popular  were  and f o l k  i n f o r m a t i o n on how t o p r e v e n t  On t h e c o n t r a r y , p e o p l e  i n the  domain were s e l d o m c o n s u l t e d f o r t h e same  Instead,  d o c t o r s as people sicknesses. medical  h i m when I  him.  f r e q u e n t l y consulted with  domains p r o v i d e d  son-in-law  I f I can t o l e r a t e  therefore, that  and m a i n t a i n h e a l t h .  professional  (The i n f o r m a n t ' s  informants  identified  Western  whose e x p e r t i s e i s used  Therefore, informants  d o c t o r s o n l y when t h e i r  sought  medical  primarily  to treat  h e l p from  Western  c o n d i t i o n s were s e r i o u s and  when t h e y c o u l d n o t cope a n y l o n g e r . S IcK  On t h e o t h e r hand, most from  people  Profess ional.  the  I:  folk,  help  and p o p u l a r  "sick".  When i n f o r m a n t s  out as primary  professional  doctor  i n t e r v i e w e d sought  belonging to the p r o f e s s i o n a l ,  domains when t h e y were  were s o u g h t  informants  domain,  were " s i c k " ,  consultants for their  informants  as t h e p r i m a r y  person  When I'm s i c k ,  then  usually  t h e y would seek  professionals care.  Within  identified help  I ask him ( d o c t o r ) . . . I  their  from. ask him t o  come. When i n f o r m a n t s were " s i c k " , f r e q u e n t l y sought  of d i s e a s e .  I:  that  scientific  d o c t o r s were  a s t h e y were c o n s i d e r e d e x p e r t s  treatment  I felt  professional  I was g e t t i n g  better,  r e s e a r c h has made me  i n the  and t h e d o c t o r ' s  improve.  That  i s why I  61  trusted Professional source  doctors  of help  needed. was  my W e s t e r n  One  I:  informant  relief  I called  whole  identified  were  felt  regards  primary to health  were  t h a t when h e r s t a t e o f h e a l t h  from the Western doctor  my  an i n j e c t i o n .  body."  I  a s he  told  I have  S o he g a v e me  I had t h a t  things  one  injection,  o h , my  r e l a x e d . E v e r y t h i n g was g o o d  again.  of emergency,  professional doctors  a s t h e o n e s who h a d k e y a c c e s s  a l s o viewed  access  with  a  up t o g e t a n i n j e c t i o n .  And once  i n case  considered  f o r physical complaints.  a l l over  body  In addition,  provide  help  " Y o u h a v e t o g i v e me  (injection).  Informants  measures  explained  my d o c t o r  (blisters)  were  especially  she sought  quick  him,  were  when u r g e n t  "pitiful",  provided  doctor.  the doctors  t o other  resources  as primary they  to hospitals. figures  who  m i g h t need when  could  they  "sick".  I:  Family help  members c a n n o t  me  help  much.  i n t h e home b y b e i n g  caring.  h e l p me m u c h o n t h e o u t s i d e . the  right  then  connections.  he c a n r e f e r  doctor  referred  me  they  But they  I f you get the r i g h t people.  XXX H o s p i t a l .  t o a l l the other  can't  The m a i n t h i n g i s t o g e t  you t o other  f r o m t h e famous  Of c o u r s e ,  people  doctor,  I have a  good  He w a s t h e o n e  who  (dietician,  physiotherapist). As m e n t i o n e d domains  were  health. clearly  before,  often consulted  Western medical seen as people  episodes.  people  They were  t o prevent  doctors,  who  from both  popular  s i c k n e s s and  on t h e o t h e r  primarily  seldom consulted  and  deal  with  hand,  folk  maintain were  sickness  for preventative  purposes  62  or  fordaily  management o f d i a b e t e s .  Besides help,  informants  expected with  stating  also discussed  doctors  their  and p a t i e n t s t o p l a y  one a n o t h e r .  doctors'  why p r o f e s s i o n a l d o c t o r s  Many i n f o r m a n t s  responsibility  were sought f o r  notions  of the roles  i n their  they  interactions  stated that the professional  was t o c a r e  fortheir  p a t i e n t s and  cure  ailments. R:  What d o y o u t h i n k a d o c t o r ' s  role i s ?  I:  of  of h i s p a t i e n t s .  course  most  i t i s t o take  important  goal  care  i s t o cure  k e e p s an eye on a n y t h i n g are Other role  any s u f f e r i n g s ,  informants  compared  of parents.  children  He  that's dangerous.  he t r i e s  them, d o c t o r s  also  And i f , t h e r e  t o cure you.  the professional doctor's  Just as parents  and love  the patient.  The  role  are protective of  should  d o t h e same  to the  their for their  patients. I:  Doctors your  should  f a t h e r or mother.  parents'  hearts.  They have Informants the on  the other  episodes  addition,  Informants doctors' I:  hand, they  mother.  Doctors'  Doctors  t o be v e r y  may b e f a c e d  your  He s h o u l d  hearts  be  they  want.  careful.  with contradictory situations were v i e w e d  when, on  as parents, and,  were o n l y t o be c o n s u l t e d  during  a n d n o t t o be t r o u b l e d a t o t h e r  times.  informants  like  are like  c a n n o t do w h a t e v e r  one hand, p r o f e s s i o n a l d o c t o r s  sickness In  be l i k e  described  s t r e s s e d the importance  their  role  as p a t i e n t s .  of complying  with  their  orders.  I f you see him, you have t o t r u s t cannot  conflict  him.  w i t h what t h e d o c t o r  What y o u d o  tells  you t o do.  63  You  have  to listen  R:  D o e s t h a t mean y o u h a v e t o l i s t e n  I:  Of c o u r s e  The  situation  expected  their  y o u do w h a t e v e r  whatever  best  interest.  the treatment  prescribed  Most  informants  have,  additionally  commanded, e v e n  i f they  amounts their  doing  what t h e y  a result,  considered  intake of  informants  informants  when c o n f r o n t e d  made c h o i c e s  oral  t o manage  their  using  folk  but l e f t  Informants  a  were  the doctors' orders  span then  versus  f o r themselves.  often played  the expected  by p r o f e s s i o n a l  by themselves  Some  might  favoured  medicines.  best  the  diuretics.  f o r example,  of following  took  of I n s u l i n .  i n c o n j u n c t i o n with Western medicine,  the dilemma  crucial  recognized the  methods o f t r e a t m e n t  Many i n f o r m a n t s ,  Western  Western medicine  a n t i h y p e r t e n s i v e s or  use other  with  they  i s the doctor!  respected  of i n s u l i n as they  i n between t a k i n g both  patients  He  A l l informants  using Western medicine,  faced  As  Illness.  however, reduced  like  Besides  illness.  informants  of taking the right  medications  time  the doctors  They c o n s i d e r e d  of their  dosages  seriousness  remedies  he s a y s .  says?  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  methods o f t r e a t m e n t . for  t o a l l t h a t he  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 w e r e  to follow  perceived  of  t o a l l o f h i s commands.  role  d o c t o r s when  with regard  to their  of i n fact,  own  health. R:  Do y o u l i s t e n  I:  Of c o u r s e  R:  So y o u f o l l o w w h a t e v e r  I:  You don't you  t o what he s a y s  I do.  then?  I f you don't, he  says.  get better.  says?  follow everything.  b e l i e v e w h a t he  you wouldn't  I t depends on whether  64  R:  DO  you  things  tell  the  t h a t you  I:  You  can't  do  R:  Why  can't  you  I:  If I tell The he  western  that!  him,  he  then  believe  He  tell  only thing would  don't  doctor  that there are  In?  is trying  to cure  you!  don't  believe  him? would  say,  "You  i s i f i t (blood sugar)  tell  g o e s up  lives  doctors  t h a t were d i f f e r e n t  many and as  varied.  Chinese  doctor R:  the d o c t o r s . One  medicine,  she So  was  d i d you  I  afraid  would  medicine  a span  explained doctor  of  may  time  would  Western  professional  Others  saw  tell  her  their  not  be  both  western  him?  He  Western  you  would  conceal  telling  were  Western as  well  professional  are  taking  of t h e i r  both  their  Chinese  the  Chinese  taking  tell  and  probably scold  w i t h each  W e s t e r n and  taking  medicine  actions.  other.  medicines,  medicines.  Western  folk  but  They  professional because  their  They p e r c e i v e d t h a t Chinese  other.  doctors kept  doctors because they medicines.  me.  Chinese  d o c t o r s c o n s i d e r e d Western and  Chinese  both  lengths to  taking  doctor  compatible  i n between  Western p r o f e s s i o n a l  medical  medicine.  i n c o m p a t i b l e w i t h each  to take  context of  also?  disapprove  t o be  who  wrongful  your  I tell  t h e y were a l s o  doctors  down,  f o r not  was  kinds of  t h a t they d i d not  medicines  Reasons  the Western medicine  Many i n f o r m a n t s t o o k left  not  both  medicine  Why  am  would  tell  No.  me."  or  what w e s t e r n  i n f o r m a n t , who  taking  Chinese I:  than  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  what t h e y d i d f r o m  in  you.  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 dally  some  I t as  a secret  perceived  from  i t as  65  I:  I see Chinese doctors  (folk) doctors also,  (Western  Why i s i t i m p o r t a n t  I:  Because  not t o t e l l  i t Is not r i g h t  b u t a l s o took  themselves  t o be n o n c o m p l i a n t  t h e y wished  to conceal  t h e y wished  R:  I:  folk  regimes  medicine,  them.  they considered  Many i n f o r m a n t s s t r e s s e d  from Western p r o f e s s i o n a l d o c t o r s  seeing Chinese  folk  doctors.  When y o u t a k e C h i n e s e  medicine,  that  that  T h i s was b e c a u s e  relationship  d o c t o r a s t h e y may need t h e i r  doctor  types of doctors.  with Western medical d o c t o r s , or  t o m a i n t a i n a good  professional  t o see both  Chinese  they betrayed  t h e y were a l s o  the doctors?  f o l l o w e d Western medical  faithfully  they thought  t e l l the  professional doctors).  R:  Even when i n f o r m a n t s  but don't  with t h e Western help  i n the future.  do y o u t e l l  t h e Western  you a r e t a k i n g i t ?  No! ( r a i s e d  voice)  I f you t e l l  those  Western d o c t o r s ,  t h e y w o u l d n ' t s e e y o u anymore! Some i n f o r m a n t s hesitant  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  t o a c c e p t what f o l k  were, t h e r e f o r e , r e l u c t a n t doctors that  medicine  offered.  t o inform these  Informants  Western  professional  t h e y were t a k i n g b o t h W e s t e r n and C h i n e s e  medicine. I:  When I went t o a s k D r . M ( a b o u t said, like  "We d o n ' t that  folk  have t h i n g s l i k e  as a d o c t o r .  m e d i c i n e ) , he  that."  He w o u l d n ' t t a l k  He a n s w e r e d me about  these  things. Informants fact  that  medicines once t h e s e  also  concealed  from Western p r o f e s s i o n a l  t h e y were t a k i n g b o t h C h i n e s e f o r other reasons. professional  folk  doctors the  and western  Some i n f o r m a n t s were a f r a i d  d o c t o r s found  that  o u t t h e y were t a k i n g b o t h  66  types to  of m e d i c i n e ,  give their  t h e y would be  clients  I:  How  about  C:  I a l s o ask  further  the Chinese him  o f f e n d e d a n d / o r would r e f u s e  help. doctor?  t o come.  I don't  tell  him  (Western  doctor). I:  Why's t h a t ?  C:  You  c a n ' t mix  him,  he  those  two  would g e t mad  come, I'd  things together.  a t me.  Then  informants  indicated  p r o f e s s i o n a l d o c t o r s would d i s a p p r o v e  for  and  their  Western medicines,  own  medicines.  good and  left  what m e d i c i n e s  their  would n o t  tell  Under t h e s e  might never  get the  o p p o r t u n i t y t o l e a r n about  the  first  of medicines  informants  the dangers  i f t h e y d i d not  of tell  situations  i n f o r m a n t s were f a c e d  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  responsibility or  never  place.  Despite a l l these c o n f l i c t i n g w i t h , an  A t t h e same t i m e ,  together  doctors  d o c t o r s t o know  p a t i e n t s were t a k i n g , t h e y m i g h t information.  in  these  Western  circumstances,  f o r Western p r o f e s s i o n a l  to this  types  medicines  between t a k i n g b o t h  gain access  taking certain  both  a good r e l a t i o n s h i p w i t h  t h e y were t a k i n g b o t h m e d i c i n e s . vital  Western  t a k i n g both  took  a span of time  In o r d e r t o r e t a i n  i t was  wouldn't  that  of t h e i r  they s t i l l  p r o f e s s i o n a l doctors, informants  although  tell  be dead J  Therefore, although  Chinese  i f he  If I  t o make d e c i s i o n s a b o u t  what was  her  i n the c o n t e x t of d a i l y  R:  How  I:  I t i s to take  care of y o u r s e l f .  things,  t h e wrong t h i n g s , i f you  about  "right"  for  life.  a patient's role?  o r do  I f you  e a t the hurt  wrong  yourself,  him  67  that's That  no  good.  You  have t o t a k e  d e p e n d s on e a c h p e r s o n ' s  good c a r e o f  q u a l i t i e s and  yourself.  his  personality. R:  You  are  s a y i n g t h a t I t i s the person's  responsibility C:  Of  course  your  own!  can.  But  dead  to take  care  i t i s h i s own I f you after  i s your  of  himself?  responsiblity.  wanted  That  life  t o jump o f f a b u i l d i n g ,  j u m p i n g , w h e t h e r you  own  own  business.  are s t i l l  is you  alive  You  have t o t a k e  care  about t h e i r  contact with  nurses.  or  of  yourself. Informants Although  were a l s o a s k e d  seven  of the  nine c l i e n t s  community h e a l t h n u r s e s , nurses  i n the  personal job  contact with  t o do  and  functional C:  hospital,  like  them.  giving  indicated  they  But  had  nurses  with any  have a  concrete,  or g i v i n g  patient healthy.  d e s c r i b e d her  said  i n terms of  injections  from  previous contact  Informants  They got a j o b t o  informant  similar  informants  nurses.  N u r s e s keep t h e  Another  few  a l l have had  o f t e n d e s c r i b e d nurses  roles  with  and  received regular help  medications.  I don't  talk  of nurses  in a  do.  impression  way.  I:  How  d i d you  C:  T h e y were n i c e , Once t h e y  find  finish  only called  the but  nurses? they're  their  not  there to chat with  job, t h e y ' l l  be  them when I needed water  on  their  way.  or t e a t o t a k e  you. I the  pills. Other  informants  friendly, roles.  but  have d e s c r i b e d n u r s e s  were s e l d o m a b l e t o  as  identify  s o c i a b l e and nurses'  professional  68 V  c:  I have  a hard  separately.  time  belonging  one  informants  o f t e n sought  as " s i c k " .  d o m a i n when t h e y  ultimate lives.  conflicts  were e x p e c t e d  by p r o f e s s i o n a l s ,  identified  t o comply with treatments p r e s c r i b e d  w h i l e on t h e o t h e r hand, t h e y b o r e t h e  responsibility  f o r d e c i d i n g what was b e s t  for their  I n o r d e r 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  simultaneous  recognized  were a s k e d  the role  illnesses.  In f a c t ,  to parallel  nurses  about  their  played  informants  work,  d o c t o r s ' , as treatment  consulted  like  that  their  informants a l s o  utilized  the folk  Within  domain, Chinese  informants recognized that concepts  That  of Western p r o f e s s i o n a l  unique  d o c t o r s were o f t e n  "not s i c k "  Besides  illnesses  c o n t a c t w i t h n u r s e s , few  and d i s e a s e - o r i e n t e d .  when i n f o r m a n t s were  d o c t o r s were  illness.  i n h e l p i n g them manage  As m e n t i o n e d b e f o r e , f o l k  the folk  them  o f t e n perceived the nurse's  and/or m a i n t a i n h e a l t h .  cultural  from  t h e Western p r o f e s s i o n a l d o c t o r ' s r o l e .  t h e y saw n u r s e s  Folk•  often concealed  u s e o f o t h e r methods t o manage t h e i r  When I n f o r m a n t s  is,  i nthe  a r o s e , however, when  p r o f e s s i o n a l doctors, informants  role  people  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 were most  of d i s e a s e ,  informants  and e a s y t o  h e l p from  o f t e n c o n s u l t e d a s t h e y were c o n s i d e r e d e x p e r t s treatment  them  of  with.  to the p r o f e s s i o n a l  themselves  each  But t h e y a r e a l l v e r y s o c i a b l e  get acquainted To c o n c l u d e ,  remembering  t o prevent  illness  t h e p r o f e s s i o n a l domain, d o m a i n when t h e y were  folk  d o c t o r s were c o n s u l t e d a s  t h e y had a t h o r o u g h  t o Chinese  "sick".  clients.  understanding of Chinese  folk  frequently consulted f o r culturally-defined  like  "fire  burning  inside a person".  T h e y were  also  69  considered  t o have d i s t i n c t  methods o f d e t e c t i n g  One method, m e n t i o n e d b y i n f o r m a n t s , pulse". paying  This  was c a r r i e d  illnesses.  was " l i s t e n i n g  to the  o u t by p a l p a t i o n o f t h e p u l s e ,  extremely close a t t e n t i o n to the c h a r a c t e r i s t i c s  while of the  pulsations. I:  I f y o u have f i r e folk  doctor)  doctors tell  i n your h e a r t ,  can t e l l  can detect  what t y p e  pulse!  pulse.  things very  of sickness  t o your  (Chinese pulse.  accurately!  y o u have by l i s t e n i n g  smart.  Western d o c t o r s  Those  They can t o your  T h e y have a l o t o f  T h e y know what t o do b y l i s t e n i n g  (Western d o c t o r s ) and  by l i s t e n i n g  They a r e v e r y  experience.  the doctor  t o your  d o n ' t know how t o do t h a t .  can only  tell  i f your p u l s e  They  i s rapid,  g i v e y o u some m e d i c i n e .  In c o n t r a s t , some i n f o r m a n t s professional doctors  perceived  only attended  that  Western  to patients' external  symptoms. I:  The d o c t o r he  (Western d o c t o r )  s e e s me, he l i s t e n s  alright, see  them.  then t h a t ' s  t o my p u l s e .  i t .  and e f f e c t i v e  whereas C h i n e s e d o c t o r s  As f o r my h e a d a c h e s , he c a n n o t  were p e r c e i v e d  were p e r c e i v e d  t o have a t h o r o u g h  o f what was s u i t a b l e f o r C h i n e s e p e o p l e . they  Western p r o f e s s i o n a l d o c t o r s  to treat  doctors  t o be d i s e a s e -  I n t r e a t i n g o b v i o u s p h y s i c a l symptoms,  when I n f o r m a n t s were " s i c k " ,  folk  I f my p u l s e i s  cannot see anything.  Western p r o f e s s i o n a l d o c t o r s  understanding  When  I have been t o t h e h o s p i t a l t o c h e c k f o r  headaches, but they  oriented  c a n n o t h e l p me much.  were a l s o c o n s u l t e d  primarily consulted their  disease.  when i n f o r m a n t s  Hence, with Chinese  perceived  that  70  they understood illnesses  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  t h a t m i g h t be i n c o m p r e h e n s i b l e  professional  informants  to treat  consulted  their  when t h e i r  specific".  t o Western  doctors.  Although doctors  Chinese  p r i m a r i l y used  d i s e a s e , Chinese  illness  Informants  also  doctors to sustain health. competencies  of western  Western folk  professional  d o c t o r s were  was p e r c e i v e d t o be used  "culture-  i n f o r m a t i o n from  these  folk  The p e r c e p t i o n s o f t h e d i f f e r i n g  p r o f e s s i o n a l d o c t o r s and C h i n e s e  folk  d o c t o r s t h e r e f o r e I n f l u e n c e d i n f o r m a n t s ' h e l p - s e e k i n g pathways. E a c h k i n d o f d o c t o r would be s o u g h t of  illness  informants  Informants both  also  identified  out depending  perceived that  as treatments  the treatments  their  that  illness,  "compatible  Chinese  offered  t o be more " c o m p a t i b l e " w i t h C h i n e s e only believed  medicines"  would s e r v e a m a i n t e n a n c e f u n c t i o n  You s a i d  Informants not  these medicines  medicines"  R:  by  doctors  c o u l d h e l p them  disease "lighter".  of t h e i r  That  folk  clients.  but they a l s o believed  offered  by them were p e r c e i v e d  make t h e i r  severity  state  f o r themselves.  t y p e s o f d o c t o r s were d i f f e r e n t .  were o f t e n s o u g h t  on what  i s , taking  treat  could  "compatible p l u s reduce the  illness.  that  i f you see the Chinese  doctor,  your  d i a b e t e s may g e t l i g h t e r ? I:  I f the medicine your  you take  i s "compatible"  diabetes can get " l i g h t e r " .  On t h e o t h e r hand, W e s t e r n m e d i c i n e , effective  f o r the treatment  weakened h e a l t h i f t a k e n I:  with you, then  I don't  although considered  of i l l n e s s ,  was p e r c e i v e d t o c a u s e  i n excess.  know what happens t o o t h e r p e o p l e .  When I  71  take  t o o much o f i t ( W e s t e r n  scattered  feeling.  I feel  medicine),  dizzy,  I have a  and t h a t ' s n o t v e r y  good. Therefore, believed used  taking either  to bring different  Chinese  outcomes.  as informants c o n s i d e r e d  bodies. reduce  They a l s o  believed  types  of treatment,  professionals prescribing As  informants  As i n f o r m a n t s  i t i s essential  regimens.  types  of medicines  o f t e n took  Chinese  have t h e i r  folk  between t a k i n g b o t h m e d i c i n e s ,  Western medicine time,  t h e y took  reduce  to treat Chinese  the s e v e r i t y  informants disapproved  advantage  of t h e i r  of t h e i r  illnesses.  utility,  i n conjunction with a span of time informants  folk  They  utilized  w h i l e , a t t h e same h e a l t h and  In a d d i t i o n , as  Western p r o f e s s i o n a l  doctors  medicine,  informants  doctors that  they  medicines.  informants a l s o  d o m a i n when t h e y were " s i c k " , informants sought  health  to maintain their  from Western p r o f e s s i o n a l  were t a k i n g b o t h popular,  medicine  illnesses  t a k i n g Chinese  their  views of both  of both medicines.  medicine  perceived that  often concealed  own  i n t h a t way,  their  on  t h e s e v i e w s when  t o optimize h e a l t h , but l e f t  t h e y took  their  a s I t may weaken  f o r western  t o e x p l o r e and u n d e r s t a n d  Western medicine  perceived  In e x c e s s  in treating  h e l d such d i f f e r e n t  medical  both  was  Western medicine,  t o be e f f e c t i v e  b u t c o u l d n o t be t a k e n  health.  medicine  i t t o be " c o m p a t i b l e " w i t h  Illnesses.  t h e o t h e r hand, was b e l i e v e d  their  Chinese  was  i t s e r v e d t o m a i n t a i n h e a l t h and  the s e v e r i t y of t h e i r  illnesses  or Western medicine  h e l p from  sought  h e l p from t h e p o p u l a r  w i t h i n the popular  domain,  f a m i l y members, p e e r s , a s w e l l a s  72  governmental  and  social  agencies.  e x p e r t s on h e a l t h m a t t e r s people  from  like  Rather  than  professional  acting  or f o l k  t h e p o p u l a r domain a c t e d a s s o u r c e s  as  doctors,  of support  when  i n f o r m a n t s when  they  i n f o r m a n t s were " s i c k " .  They would a s s i s t  needed  d o c t o r s , would h e l p w i t h d a i l y  t o t o go t o t h e i r  or be p e r s o n s used  these  to discuss things with.  supports  support interviewed,  from  three l i v e d  contact with t h e i r daughter  helped  of  with t h e i r  children.  a r e your  even  come h e r e ,  f a m i l i e s and/or  own.  That  i f you don't  i t was c o l d  some e y e o i n t m e n t .  and r a i n y ,  they  would  she ( d a u g h t e r )  last  came  n i g h t , I had t o g e t  Because the d o c t o r wrote t h e  on a p i e c e o f p a p e r ,  pick  So s h e g o t t h e e y e o i n t m e n t  i t up.  When  say anything, they  prescription  s h e had t o come t o  i n f o r m a n t d e s c r i b e d how h e r s o n and  accompanied  had c l o s e  s h o u l d be e x p e c t e d o f  t h e y would come.  t o h e l p me b u y g r o c e r i e s . . . L i k e  Another  informants  One i n f o r m a n t d e s c r i b e d how h e r  When t h e y have t i m e ,  have t i m e ,  I:  the nine  illnesses.  h e r t o buy g r o c e r i e s and m e d i c i n e .  I : The c h i l d r e n them.  Informants, t h e r e f o r e ,  i n d a i l y management o f t h e i r f a m i l y members,  chores,  h e r when s h e v i s i t e d  f o r me.  daughter-in-law  her d o c t o r .  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 t h e street.  Otherwise,  i f I'm i n C h i n a t o w n a n d i t ' s s o b u s y  down t h e r e , I c o u l d n ' t manage on my own. daughter-in-law  So u s u a l l y  my  goes w i t h me t o s e e t h e d o c t o r , and my  s o n d r i v e s me t h e r e . The  k i n d of a s s i s t a n c e Informants  practical  types  described  this  said  of help f o r day-to-day clearly.  t h e y r e q u i r e d was survival.  One  informant  73  I:  I t d o e s n o t m a t t e r whether or n o t .  The most  they  important  (children) are caring  t h i n g i s that they  met...what's t h e u s e o f c a r i n g ? have t o come and h e l p . drumsticks,  help  What u s e i s i t ? You  L i k e I have t o buy c h i c k e n  and p i e c e s o f c h i c k e n  t o make  soup.  S h e ( d a u g h t e r ) w o u l d b u y them f o r me, c l e a n t h e c h i c k e n , get other  r i d of the s k i n ,  informants  who  lived  and c u t i t up f o r me. alone  s e l d o m had c o n t a c t w i t h a n y  f a m i l y members n o r r e c e i v e d h e l p refused  f r o m them.  One i n f o r m a n t  even  t o move t o T a i w a n where h e r s o n s were, f o r f e a r s h e  m i g h t be a b u r d e n t o them. C:  My s o n i n T a i w a n h a s a s k e d  me t o r e t u r n .  I would  rather not. I:  Why?  C:  I t ' s v e r y t r o u b l e s o m e t o go b a c k . An  o l d lady like  Wouldn't peace? much.  My s o n s a l l work.  me would be t o o t r o u b l e s o m e  i t be b e t t e r i f t h e y c a n go t o work f e e l i n g a t An o l d l a d y l i k e  me,  I might t a l k  and nag t o o  So I s a y , " I d o n ' t want t o t r o u b l e o t h e r s . " .  I n f o r m a n t s who d i d n o t have c h i l d r e n  t o h e l p them  their  of support  n e e d t o have a c o n s t a n t  regarding d a i l y said  C:  matters  that having  having  your  constant  like  source  when t h e y were " s i c k " . support  own f a m i l y member  I would sick  f o r them.  like  expressed  to consult One  t h a t would be  with  informant like  present.  t o have somebody who w o u l d s e e how my  condition Is.  T h i s person  would d i s c u s s w i t h  whether  I need t o go t o t h e h o s p i t a l .  nothing  much t h e m a t t e r ,  alright  t o s t a y a t home.  then  I f there's  he/she would  That's  me  tell  me i t ' s  the kind of help I  74  would  like,  I  n o t h i n g more.  would r e a l l y  like  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 . be  very nice,  find. your Informants use  Having  would  i s v e r y hard t o  t h a t would be l i k e  having  present.  h e l p when t h e y were " s i c k " . f a m i l y members e x p r e s s e d  persons  like  sources  of support.  Others  made  who d i d n o t  t h e need t o have  f a m i l y members t o be p r e s e n t and a c t a s c o n s t a n t  Support  from p e e r s .  Besides  lacking  support  i n f o r m a n t s seldom r e c e i v e d h e l p from  with peers  That  who had f a m i l y members t o t u r n t o f o r s u p p o r t  have h e l p f r o m  greeting  kind of people  somebody l i k e  own f a m i l y member  of t h e i r  members,  but t h i s  to find  only included attending social  them on t h e s t r e e t s . support  from  peers.  family  Contact  e v e n t s w i t h them, o r  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  seldom u t i l i z e d  peer  f o r fear  be  publicized.  She p e r c e i v e d t h a t  of  i n f o r m a t i o n was e s p e c i a l l y  i n f o r m a t i o n about  maintaining  important  i n a d e n s e l y occupied apartment  building  h e r may  confidentiality  f o r her as she r e s i d e d w i t h two h u n d r e d  other  seniors. C:  Like this  building,  These o l d p e o p l e  have a l o t o f t i m e , and some have  v e r y good memory! absorb  what y o u t o l d  C:  like  herself,  their  t h e y go h e r e  them s o m e t h i n g ,  brain!  And b e c a u s e  and t h e r e and t a l k  that  their  friends,  about  could not o f f e r  who were a l l  much h e l p anyway.  B e c a u s e a l l my f r i e n d s a r e o l d l a d i e s . cannot  they  them.  informants stated  elderly  Once y o u t e l l  everything inside  t h e y have t i m e ,  Other  i t ' s a l l o c c u p i e d by o l d p e o p l e .  even c a l l  Old ladies  f o r h e l p because they c a n ' t  speak  75  English.  So i t ' s v e r y  troublesome.  T h u s , a l t h o u g h many i n f o r m a n t s had e a s y a c c e s s i b i l i t y seniors,  they seldom  Scarcity  of supports.  up w i t h  little  illness  on t h e i r  own w i t h  their  deteriorated C:  support,  little  help  o f f a m i l y and p e e r  fears  with  them a s s o u r c e s  As a r e s u l t ,  f a m i l y and p e e r  With the s c a r c i t y disclosed  identified  that  would be v e r y p i t i f u l .  informants  f o r help.  eyes,  your  The most  important  arms, and y o u r  t h i n g s w i t h my arms s o t h a t  They a l s o e x p r e s s e d  feet.  Although  I c a n g e t some  would have t o a s k .  then  With the s c a r c i t y  their  feelings  still  practice.  frustrations  i f help  of supports,  increase.  of f r u s t r a t i o n  m i g h t n o t be a v a i l a b l e .  You have  what i t ' s l i k e .  i t ' s very d i f f i c u l t  never  I f you can't get  and f r u s t r a t i n g .  informants  expressed  They f e a r e d t h a t  A t t h e same t i m e ,  when, e v e n  What I  I f I c a n ' t do i t ,  You a r e y o u n g .  o f f e a r and f r u s t r a t i o n .  h e l p might  I  discomfort with having t o  I w o u l d do i t m y s e l f .  been o l d and have f e l t  feelings  thing i s  when t h e y n e e d e d i t .  c a n do m y s e l f ,  help,  I f my  f o r help,  I f I need h e l p , I would have t o a s k f o r h e l p .  I  health  i s somebody who h e l p s me wash my c l o t h e s ,  was n o t a v a i l a b l e  for  available. s u p p o r t , many  Many i n f o r m a n t s a l s o d e s c r i b e d t h e i r  I:  their  walk and I have t o r e l y on p e o p l e  have y o u r  f o r help.  ended  i n c r e a s i n g age.  cannot  do  ask  b u t managed  o f i n c r e a s e d dependence a s t h e i r  feet  there  of support.  many i n f o r m a n t s  I hope I would n o t have t o a s k p e o p l e  to  t o other  they  i f they asked  both their  need  shared f o r help,  help  76 Support informants  from  mostly  sought  domains f o r a d v i c e the  other  support.  governmental and/or s o c i a l  on  As d e s c r i b e d by  people's  available,  Due  Informants  to-day  living.  informant  her  meet h e r The  was  t o the popular one  help.  folk  type  of support they  t o cope more e a s i l y  l a c k of  On  domain f o r  I n t h a t way,  for practical  f a m i l y and  they  might  with  peer  support  h e l p t o a i d them i n  t h a n k f u l t h a t the Canadian government  or  day-  helped  b a s i c needs.  C a n a d i a n government  gives  i s good t o us  us money t o s u p p o r t  u s , what would we o c e a n and eat,  and  o f t e n r e s o r t e d t o h e l p by g o v e r n m e n t a l  service agencies  One  to the  professional  when t h e y were " s i c k " .  informants,  practical  social  I:  turned  a s s i s t a n c e i n order  sickness episodes.  the  h e a l t h matters  hand, i n f o r m a n t s  were l o o k i n g f o r was use  h e l p from  agencies,  kill  eat?  us.  We  I f they d i d not  support  m i g h t a s w e l l jump i n t o  ourselves.  enough t o d r i n k , and  ( s e n i o r s ) and  As  l o n g a s we  the  have enough  are able to l i v e ,  we  do  to  not  have t o o many demands. Homemakers, s e n t by s o c i a l important visited dally  p a r t i n the  the  I had  to  take  nurses  not  often played  Homemakers on  for informants  an  average  lived  alone,  the o u t s i d e  world.  o p e r a t i o n f o r my took  c a r e o f me  nobody t o t a k e c a r e do  lives.  only contact with  t o have an  hospital  agencies,  homes once o r t w i c e a week t o h e l p  Frequently,  homemakers were t h e i r I:  informants'  informants'  chores.  service  c a r e o f me.  a t home. o f me,  have much money, and  who  c a t a r a c t s , and  the  Then t h e y s e n t  someone  I told then I do  he  with  my  doctor  that I  s e n t someone h e r e .  not  have much t o do.  had I I  77 rely The  lack  on  that  person  o f f a m i l y and  i n f o r m a n t s were a s k e d happened  in their  governmental  and  t o come and  peer  support  social  Again,  a g e n c i e s as a  What h a p p e n s when you  I:  He(doctor)  told  me  then  call  a p l a c e , and  get  R:  So  i f something  I:  Yes. took  that  L e t me  I:  see  now,  this  out a s m a l l s l i p w r i t t e n on  place.  But  it.).  he  has  can  basic  expressed  needs be met  that  service  g o v e r n m e n t has  The  s e r v a n t comes h e r e  the  floors,  and  He(doctor)  He  So lack  then  agencies.  a  was  an  ambulance  from  place?  (The  told  Informant  me  t o go  As  phone not  t o g e t some k i n d o f will  notify  asking for  him. was  more.  servant(homemaker). She  h e l p s me  wash  f o r e v e n more s e r i o u s  t h a t may matter  happen  is i f I  s i n c e I'd be  f a m i l y members and  adopted  to  i n f o r m a n t does  h e l p from governmental  Informants  that  nothing  once a week.  i f I d i e , i t doesn't  o f t e n sought  me  people  a l l she  a s s i g n e d me  of support  (The  told  the bathtub.  t h e s e a g e n c i e s were u s e d living.  wrong,  w i t h t h e name o f a  adequately,  The  informants  for help.  send  would c a l l  I phone?  o r an a m b u l a n c e , and  informant  t o the  to  i s something  Is the p l a c e  t h i n g s , a more s e r i o u s t h i n g  Due  serious  n o t e v e n w r i t t e n down t h e  speak E n g l i s h . )  die.  when  well?  they w i l l  of paper  read nor  her  feeling  h a p p e n e d , you  Then how  Another  felt  i f something  last resort  i f there  number.  car,  especially  me.  hospital this  are not  that  me.  informants turned  R:  to  was  what t h e y would do  lives.  I can  help  peers,  and/or  pragmatic  t o h e l p them meet t h e i r  dead.  social  attitudes  that  b a s i c needs o f  78  Informants' response Despite  the absence  o t h e r s , and agencies  their  s i t u a t i o n as  of support from loved  need  for help,  i t existed.  i n f o r m a n t coped  and  by n o t w o r r y i n g .  worry,  his  worry  lot.  capable  You You  tolerate  he  coped  they  longer. diabetic  for his situation  Only hurt  Don't yourself i f  by a d a p t i n g h i s l i f e s t y l e  realizing  another  impending  his  most  light  have t o a d a p t  your  i t because  much.  I f you do  of your age.  s h o u l d aim  for.  and so,  What y o u You  as  lifestyle  s a y you want t o s t r u g g l e  cannot eat that  to  limitations.  you  are  cannot  limits.  informant p a s s i v e l y accepted l i f e  as  i t was  and  death.  I f I don't away.  You  cannot  o f i s what you  s t r e t c h your  in  much  that  When a p e r s o n g e t s o l d , o f c o u r s e i t ' s n o t a s good  cannot  Thus,  acceptance of the  what t h i n g y o u c a n do!  you c o u l d n ' t h e l p !  informant stated  eat a  I:  live  social  worry.  accordingly.  her  and/or  ways o f c o p i n g w i t h t h e i r  when you were y o u n g .  Still,  not  significant  the a t t i t u d e  by d o i n g what he c o u l d  h e a l t h c o n d i t i o n and I:  their  Many a d o p t e d  I s a y t o m y s e l f , "Do  Another  ones o r  w i t h o l d age.  One  you  of s u p p o r t s .  to governmental  t h e y would  had d i f f e r e n t  c o n d i t i o n and  I:  to resort  informants voiced  were o l d anyway, t h a t Informants  to the s c a r c i t y  get b e t t e r ,  I'll  just  close  informants adopted  o f t h e s i t u a t i o n and  To summarize,  I wouldn't my  mind  i f I die  e y e s and  p a s s away.  an a t t i t u d e  of p a s s i v e  their  right  acceptance  age.  informants c o l l e c t e d  information from both  the  79  popular  and f o l k  d o m a i n s 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  sick".  On t h e o t h e r  professional,  folk,  were " s i c k " .  People  were o f t e n s o u g h t other  informants  and p o p u l a r  Although  faced with  informants  i n the popular  frustrated  resources  before  condition.  informants  they  of acceptance  informants  often  available  o f what  their  Collecting  i n f o r m a t i o n from the a v a i l a b l e  stage  of information  collecting,  i n f o r m a t i o n from the h e a l t h  had c h o s e n t o u t i l i z e . folk,  health  t h e y made d e c i s i o n s on how t o manage  and p o p u l a r  i n f o r m a t i o n used by i n f o r m a n t s  People  care  from t h e  domains r e p r e s e n t e d  source of  a s t h e y made h e a l t h d e c i s i o n s  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  Following collection through  analysed  In t h i s  information collected  informant  emphasized  from H e a l t h Care  Resources  of i n f o r m a t i o n , Informants then  a complex d e c i s i o n - m a k i n g  information collected.  One  domain,  the lack of help  information  At t h i s  accumulated  professional,  and  Due t o t h e l a c k o f  and o l d age m i g h t b r i n g .  Informants c o l l e c t e d  resources  with  adopted an a t t i t u d e  Informants'  their  t o cope  t h e t h r e a t o f i n c r e a s e d d e p e n d e n c e , many  health situation  care  Illness.  i n order  t o h e l p from governmental and/or s o c i a l s e r v i c e  agencies. and  On t h e  domain were s o u g h t b y  when t h e y were " s i c k "  support  they  domains  regarding health matters.  w i t h d a i l y management o f t h e i r  resorted  to the  domains when t h e y d e c i d e d  from t h e popular  f o r support  f a m i l y and p e e r  turned  f r o m t h e p r o f e s s i o n a l and f o l k  f o r advice  hand, p e o p l e  informants  hand,  this  process  to analyze the  a n a l y s i s phase,  Informants  t o a s c e r t a i n i f i t was point.  went  "right".  80  I:  The  doctors  and  so  did  to think  i n the the  hospital  books.  i f i t ' s the  And  right  give you  you  some  think  information,  about  t h i n g t o do.  it  You  yourself  have t o  be  determined  by  careful. The  a n a l y s i s o f what  certain not  criteria.  During  n e c e s s a r i l y have t o  criteria  the  adopted. The  i n f o r m a t i o n was  f i t a l l criteria.  These c r i t e r i a  lives,  was  knowledge, d i d not values  and  may  s e l e c t e d by  proven c o r r e c t , d i d not daily  a n a l y s i s process,  i n f o r m a t i o n met,  criteria  their  the  be  grouped  interfere b a s e d on  and  personal, conflict  "inner sense" t h a t the  i n f o r m a t i o n was  Information  Correct  was  Proven  informants it  has  One  "right"  stated that  somebody e l s e , I feel  he  was  diabetes  found  lived  "common"  social  and  cultural  informants'  considered  Information the  "right" was  information  cured  by  very d i f f i c u l t  told  us  t h a t he  recognized  c u t s or b l i s t e r s  also had  for  was  the  had  diabetes,  to cure.  diabetes we  that preventing  i n f o r m a t i o n t o be  f a t h e r , who  had  e a t i n g something, then  getting  that  i n f o r m a t i o n worked  be  informant  considered  i f the  may  Another  her  informants  was  would t r y t o use i t .  some o l d e r man  how  categories.  information  with  i n f o r m a t i o n was  i f informants  be  before.  informant  I:  that  five  more  "right".  been p r e v i o u s l y p r o v e n c o r r e c t .  considered worked  said  how  i t would  " o r d i n a r y " and/or  with  d i d not  into  were t h a t  with  information did  However, t h e  t h e more l i k e l y  informants  conflict  beliefs,  " r i g h t " was  before  if but  might t r y I t . h e r s e l f from  " r i g h t " t h i n g t o do. "right" after had  But  difficulty  she  She witnessed  healing his  If  81  wounds.  Therefore,  I n f o r m a t i o n was  informants witnessed I:  When I was  i t work  w i t h my  also considered  before.  father  i n the h o s p i t a l ,  d o c t o r s and n u r s e s t h e r e s a y t h a t h e a l wounds...So I am feet,  it  rotted,  my  hands.  I n f o r m a t i o n was experimented  also  I saw  that  very careful  considered  packages of t e a .  feels  I f you t h i n k ,  him...After  also  one  I'll  hurt  found t h a t  (Chinese d o c t o r ) , You  the  and  u s u a l l y get  you two  p a c k a g e and s e e what  package  heart  of Chinese  i f it's  better,  o f t e a . You m i g h t After  also  I might get f i v e  packages.  Then  The  I'll try a  little  The W e s t e r n d o c t o r  i s the  have t h a t  disease.  Even t h e Western  t o l e t you t r y I t f i r s t ,  considered  better  I would e v e n go back and g e t  i s to experiment with.  is careful  feel  I have t a k e n two  g i v e you t h i s m e d i c i n e t o t a k e . "  i n f o r m a t i o n was  not  informants  and have  T h e y d o n ' t d a r e t o s a y , "You  doctor  I will  how  i f y o u r f e e l i n g s a r e u n c o m f o r t a b l e , you m i g h t  more w i t h t h e s e c o n d p a c k a g e . same.  he had and  so t h a t  of t e a .  you have had one  two more p a c k a g e s . first  my  Then y o u w o u l d n ' t go back t o  the second package.  packages,  that  " I t h a s n ' t worked, my  t r y a second package  after  now  hands,  have  You t r y t h e f i r s t  uncomfortable."  medicine,  spot  to  useful.  g e t a n o t h e r package  happens.  not  learnt  Then y o u would go and s e e h i m would  w i t h my  " r i g h t " when  w i t h what they have  i n f o r m a t i o n was I:  I am  I will  I heard the  i t i s v e r y hard  very c a r e f u l  everywhere so t h a t  blisters...Because  "right" i f  right?  " r i g h t " when d i f f e r e n t  sources  82 of  information said  informants  I:  t h e same t h i n g . information  thought,  Just  like  confirmed  was  I have a nephew.  important  I n t h a t way, a s some  He t o l d  t o be  us t h e most  t h i n g t o do w i t h r e g a r d s t o d i a b e t e s i s t o  be c a u t i o u s w i t h e a t i n g . . . O u r d o c t o r a l s o do  told  t h a t . . . E v e n f r o m o u r b a s i c k n o w l e d g e , we  that  we s h o u l d a v o i d  information  d i d not  Another  "right".  me t o  understand  f o o d s w i t h t o o much f a t .  interfere  major c r i t e r i o n  with  informants'  pally  information  was t h a t  was  "right"  informants  lived  their  Informants  would  f o l l o w what t h e i n f o r m a t i o n s u g g e s t e d p r o v i d e d  when  daily  greatly  also  considered  that  i t d i d not I n t e r f e r e  Lives  with  how  lives.  i t was e a s y t o a d m i n i s t e r .  R:  Why w o u l d y o u c h o o s e t h e W e s t e r n d o c t o r o v e r t h e Chinese  I:  doctor?  I t ' s convenient t o see a w e s t e r n d o c t o r . and  medicine  that  Conversely, carrying "troublesome".  The p i l l s  they give out are convenient t o take.  o u t t h e s u g g e s t i o n s s h o u l d n o t be t o o  Informants  preferred  treatment  regimes  that  were r e l a t i v e l y e a s y t o c a r r y o u t . I:  So I went t o s e e t h e C h i n e s e d o c t o r . him,  he a s k e d  me t o b o i l  some m e d i c i n e .  I s a t on my b e d , l e a n i n g a g a i n s t  and  off.  I dozed  When  little  not  water  seeing  So when I was  doing that,  the wall,  I woke up, I jumped up and went  t o have a l o o k a t t h e m e d i c i n e .  Another  After  left...But  There  because b o i l i n g  was s t i l l medicine  a i s so  troublesome,  I didn't  see t h a t  requirement  was t h a t  what t h e i n f o r m a t i o n s u g g e s t e d  too expensive  to carry out.  C h i n e s e d o c t o r anymore. was  83  I:  I f the  thing  i s not  really  high  p r i c e d , t h e n O.K.,  I  try i t . Information An  was  Based  important  on  criterion  information  was  information  made s e n s e t o  R:  Have you  I:  He  said  t o be  b a s i c and  followed things  careful  what he  was  that  Therefore,  (Western m e d i c a l  t h a t were v e r y when I e a t .  E v e n f r o m our  that  should  avoid  common.  He  Otherwise, the t o him  the  the  foods with  doctor) said  too  said?  I have  sickness  because t h a t  b a s i c k n o w l e d g e , we  would  sounds  understand  much f a t .  " o r d i n a r y " r e m e d i e s t h a t were commonly u s e d  maintain  health  f o r the  family.  were t h e r e f o r e e a s i l y a c c e p t e d  I:  considered  Informants.  right.  improve and  "Common" Knowledge  commonly known.  coming...We l i s t e n  we  or  informants  keep on  T h e r e were a l s o  these  "Ordinary"  C e r t a i n t h i n g s , our it's  no  problem.  corn  h u s k s and  effects.  And  chicken,  usual  whole  and  things  pigs' pancreas. ordinary things families  frequently  f a m i l y can  These are  can  Remedies  eat  like  like  eat  Then  s o u p made no  big  beef shanks  i t too.  like  used.  i t .  There are  So  to  with side  or  i t ' s no  big  deal. Families  f r e q u e n t l y made t h e s e  remedies because  they  " o r d i n a r y " s o u p s and  considered  them n o t  harmful to  used  other  their  health. I:  The  others  are  just  have b i g o r h a r m f u l  ordinary things. effects.  T h e y would  not  84 IftfQrm.fltJ.Qn, d i d . n o t  Cultural At it  vainer! and  Conflict  Information  with  beliefs.  the  " h o t " and " c o l d " c o n c e p t s  she  F o r e x a m p l e , one i n f o r m a n t  and  avoiding "cold"  foods  or c u l t u r a l  medicine.  "coldness". was  "right"  when  values  strongly believed in  of Chinese  her s i c k n e s s t o e x c e s s i v e  advocated  Social,  was c o n s i d e r e d  personal, s o c i a l ,  and  attributed  Personal,  Beliefs  t h e same t i m e ,  d i d not c o n f l i c t  wUh  She As a  the " r i g h t "  result,  thing to  do. I:  The w a t e r h e r e  Another that  i s too cold.  also,  like  water  chestnuts.  informant  adhered  " s a i yeung c h o y "  related  So I a v o i d c o l d (a type  the importance  to t r a d i t i o n a l  cultural  i n s t a n c e when s h e was h o s p i t a l i z e d , water p r o v i d e d water. I:  Her r a t i o n a l e You know, t h i s our  habits.  I:  i s the Chinese  If I drink their  diarrhea.  I was a f r a i d  from t h e i r  Also  practices.  information I n one  she r e f u s e d t o d r i n k  people's water,  I was a f r a i d  culture, i t ' s  firstly  with  what  informants  have  experiences. I am n o t  young, so I g e t i n f o r m a t i o n from e x p e r i e n c e .  and  I was n o t  I might g e t  I know what t o e a t and what n o t t o e a t .  about  iced  I might g e t a stomachache.  a l s o not c o n f l i c t past  of u s i n g  was a s f o l l o w s ,  to I t .  should  o f v e g e t a b l e ) , and  b u t had h e r husband b r i n g h e r b o i l e d  accustomed  Information learnt  by s t a f f  foods  i t blindly.  I have b r o u g h t  up s o many  I don't children  g r a n d c h i l d r e n , I know v e r y w e l l what t o d o .  go  85  information that  d i d not  information  Lastly,  conflict  was  informants'  "inner  an i m p o r t a n t c r i t e r i o n used  t o determine  o r n o t r e l i e d on i n f o r m a n t s '  T h i s "inner sense",  d e p e n d e n t on how i n f o r m a n t s  Many i n f o r m a n t s have s t a t e d i n f o r m a t i o n was " r i g h t "  whether "Inner  a s d e s c r i b e d b y i n f o r m a n t s , was felt  a b o u t t h e i n f o r m a t i o n and  w h e t h e r 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  R:  sense"  "Right"  i n f o r m a t i o n was " r i g h t " sense".  with  that  based  informants.  they determined  on how t h e y f e l t  How would y o u t e a c h o t h e r p e o p l e  what  whether Inwardly.  Information i s  "right"? I:  You c a n ' t t e a c h o t h e r p e o p l e . and  t o whom?  feel. Another inner  I t i s from y o u r s e l f .  I t ' s from  You c a n ' t d e s c r i b e i t t o o t h e r  informant a l s o  feeling  R:  How do y o u t e a c h them,  that  supported  the idea  how I  people.  that  people  had an  t h e i n f o r m a t i o n was " r i g h t " .  How do y o u 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  right? I:  I t h i n k i f t h i n g s have a good r e a s o n , it's  saying i s right  right.  and n o t bad, then  I f i ti sright,  then  i f I feel I feel  what  i t is  I f o l l o w and do what i t  says. R:  How do y o u know i f t h i n g s have a good  I:  T h a t d e p e n d s on y o u r right,  This  then  "inner sense"  "right"  I:  I f you f e e l  i t is  i t i s right. o f whether  was a l s o d e t e r m i n e d  "compatible" with  own t h o u g h t s .  reason?  i n f o r m a t i o n was " r i g h t "  or not  b y w h e t h e r t h e i n f o r m a t i o n was  informants.  i f you t r y something, and you f i n d  i t ' s compatible  86 w i t h y o u , t h e n y o u 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 " w i t h  informants,  experienced  indicated  that  some p h y s i c a l  s e n s a t i o n s which  t h e i n f o r m a t i o n was n o t " r i g h t "  I:  I t h i n k MSG has some e f f e c t s body i s n o t c o m p a t i b l e body.  You would  feel  tasted  s o u r and f e l t  with  t o them  f o r them. on y o u r  body.  i t , i twill  I f your  affect  once y o u e a t i t t h a t numb.  they  your  And y o u c a n l o s e  your mouth  your  appetite. Another food  Informant  he t o o k  I:  had d i f f e r e n t  was n o t " c o m p a t i b l e "  A person  knows a b o u t  than a doctor can. is  not compatible  you  Informants  and y o u f e e l  collected  p r o c e s s was d e t e r m i n e d  criteria  were t h a t  based with did  on " o r d i n a r y " a n d / o r the person's  not c o n f l i c t  i n f o r m a t i o n was  social, with  by f i v e  lived  to analyze  to ascertain  f o r them o r n o t .  criteria.  their  eyes g e t  the health  was u s e d  correct, daily  The  These d i d not  lives,  was  "common" k n o w l e d g e , d i d n o t c o n f l i c t and c u l t u r a l  v a l u e s and b e l i e f s , and  informants' "inner sense"  "right".  body  with i t .  a complex p r o c e s s  i n f o r m a t i o n was p r o v e n  w i t h how i n f o r m a n t s  and y o u r  i n f o r m a t i o n from  was " r i g h t "  analysis  interfere  dizzy,  The a n a l y s i s  information collected  and y o u r  i t , t h e n y o u have t o c h a n g e . . . I f  then you a r e not compatible  information collected.  whether  w i t h him.  I f you e a t something,  c a r e r e s o u r c e s , t h e y went t h r o u g h the  s e n s a t i o n s when t h e  what he c a n e a t o r n o t e a t b e t t e r  with  e a t something,  blurry, After  physical  that the  87  Informants' After  C r e a t i o n o f Own selecting  mentioned c r i t e r i a ,  the  Treatment  "right"  Regime  I n f o r m a t i o n based  i n f o r m a n t s went t h r o u g h  on t h e  a process  of  s y n t h e s i s whereby 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 " to  create their  unique  own  treatment  ways o f c r e a t i n g  t h e s e ways w i l l  be  regimes.  their  own  treatment  both Chinese  i n managing t h e i r  t h a t mixing both Chinese "right"  thing  incompatible  regimes.  and  own  w i t h each  not  However, i n o r d e r t o Western m e d i c i n e s ,  to  before taking  i t s effect  was  the  t h e y took  f o r one  i t ' s not  good.  I t ' s n o t good  So  medicine  But  the C h i n e s e  c a n ' t mix  medicine.  You  c a n ' t do  W e s t e r n d o c t o r , you go  t o see  t h e n you  health.  medicine  d o c t o r and  very  have  to  Western  go  t o see  take Western medicine.  the Chinese  medicine  yourself.  and  When you  When  take Chinese  the you  medicine,  s h o u l d n o t t a k e W e s t e r n m e d i c i n e . . . I f you  taken Chinese  medicine,  wait t i l l  before  the other  medicine,  taking  others selected same t i m e ,  you  t o take c a r e of  that!  different  t h e n i g h t has  have  passed  p i e c e s of i n f o r m a t i o n t o use.  informants c o n t i n u a l l y experimented  information.  The  e x a c t l y which  information selected  both  other.  t a k e t o o much W e s t e r n m e d i c i n e ,  t a k e some C h i n e s e  be  take  I f you  f o r your  the  were c o n s i d e r e d t o  but a l l o w e d a span of time  you  Some o f  They p r o f e s s e d  t y p e s of medicines  I:  had  W e s t e r n methods  Western medicines  other. and  and  Illness.  t o do a s b o t h m e d i c i n e s  advantage of both Chinese  take  used  i l l u s t r a t e d below.  Some i n f o r m a n t s combined of  was  A l l informants  treatment  above  g o a l o f e x p e r i m e n t a t i o n was was  with  the  this  to find  effective  At  out  i n maintaining  88 normal  blood  and urine  results.  One  informant- e x p l a i n e d  had  "cold"  sugar  i norder  She experimented  because  possessed I:  and "bo" f a c t o r s  results.  factors  how s h e e x p e r i m e n t e d  these  qualities  foods  with  foods  that-  t o m a i n t a i n normal  with  foods  blood  t h a t had "bo"  were b e l i e v e d t o be " h o t " p l u s  t h a t " n u r t u r e d " t h e body.  I f i t ' s t o o"bo", y o u c a n ' t  eat it.  (of  ( n u r s e s ) come t o t e s t  "bo" t h i n g s ) ,  urine,  be  goes up, I would  some  "cold"  afraid...Once  are  my  they s a y i t ' s t o o h i g h . . . I keep on t e s t i n g .  my s u g a r boil  when t h e y  I f I e a t t o o much  i nbalance,  t r y something  things t o clear  else.  i to u t , then  I would I  t h e "bo" t h i n g s and t h e " c o l d " then  you wouldn't  need  I f  wouldn't things  t o be a f r a i d .  I  have t o keep on t r y i n g . Some i n f o r m a n t s a l s o past  experiences  and used  manage t h e i r  illness.  One  stated  Informant  made  use of Information they skills  she gained  who w a s a C h i n e s e  herbalist.  some C h i n e s e  medicine,  I:  folk  I believe the  t h e y ask... Sometimes apply. not Other  they  Besides shealso  tried  made  carry  t h a t would  believe i n  myself t o  I c a nwalk and nothurt.  " o r d i n a r y " a n d commonly-used  soup t o m a i n t a i n t h e i r  to d i s c o v e r something  and using  out everything  T h e n my b o n e s w o u l d  new methods o f t r e a t m e n t  them  her father,  insulin  doctor, and I also  used  t o help  from  I make some m e d i c i n e s  of pain.  from  h e r own m e d i c i n e .  I f I p u tthem on t h e l e g , then  be a f r a i d  like  taking  B u t I don't  informants consistently  remedies  previously  much k n o w l e d g e  i nthe Chinese  Western doctor.  learnt  learnt  health. from  time  be e f f e c t i v e  A t t h e same t o time,  time,  hoping  i n treating  89  diabetes.  In this  informants  went  through  a process  considered  "right"  was t h e n  they  informants'  stage  of the decision-making  process,  of synthesis. put together  Information  to  own u n i q u e a n d c r e a t i v e t r e a t m e n t  formulate  regimes.  Action The  last  step  i n health decision-making  carried  out the treatment  action.  I t Is important  model as d e s c r i b e d A"S i n f o r m a n t s experiences, were faced to  t o note  represented  accumulated  they  that the health  an ongoing  As i n f o r m a n t s  their  informants into  decison-making  and c y c l i c  process.  new i n f o r m a t i o n a n d h a d new  lived  health decision-making  cope w i t h  have c r e a t e d  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  derived. with  regimes  i s when  illness  a s new  meanings  wi'th d i a b e t e s , t h e y on a c o n t i n u a l b a s i s  i n the context  of their  were i n order  daily  lives.  Summary This  chapter  experiences detailed  has presented  as they  with diabetes.  d e s c r i p t i o n s o f how t h e y  own p e r s p e c t i v e s . definitions diabetes effects  lived  informants'  Their  of the cause  worked, t h e i r diabetes  Within described  the context  of diabetes  central  t h e m e t h a t came o u t o f t h e d a t a  illness.  As a r e s u l t ,  informants'  life  From  t o seek  their their  explanations  viewed  informants'  o f how  diabetes, illness  was how t h e y  formulated.  model  they  i nthe  descriptions,  h e l p a n d manage  a decision-making  d e s c r i p t i o n s was  from  encompassed  a n d managed t h e i r  of their  In everyday  lives.  gave  as an i l l n e s s , and the  Informants  context  decisions  diabetes,  their  lives.  o f how  experienced  daily  viewed  of diabetes  their  of  Informants  of diabetes, their  views  h a s on  how t h e y  views  accounts  made  their  based  on  a  9 Making  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  challenging for  to  informants  taking care  regimes.  of their  Based  outlined  distinct  often  When t h e y  prevent  folk  informants  sought daily from and  whether themselves  i n those  I n those  doctors  regarding  domain.  others,  informants  With  values  illness.  criteria.  informants Both  h e a l t h and  illness  were  informants  health.  were  elderly  sought  from t h e  "sick",  they  them cope  was a n a b s e n c e  Informants  a  Although  I t was e s p e c i a l l y  that there  "sick",  was p e r c e i v e d  health matters  with  evident  of family  within the  from  significant  instead t o governmental or  f o r help.  of Information  analysed  or"not  from t h ep r o f e s s i o n a l  the lack of support  s e r v i c e agencies  their  domains.  domain t o help  often resorted  Upon c o l l e c t i o n  defined  "sick"  informants  d o m a i n s when t h e y  f o rthese  popular  then  and f o l k  to sustain their  accounts  support  informants  were  instances then,  from the popular  informants'  social  evaluated  as "not s i c k " ,  i n s t a n c e s when  management o f t h e i r  peer  they  consulted with people  and folk  support  first  I n c o n t r a s t , when  sought advice  professional  within the  i n f o r m a t i o n o n how t o m a i n t a i n  culture-specific. from  treatment  the researcher  by informants  from t h e popular  sicknesses.  domain, except  accounts,  that they  defined  help  primarily  help  taken  s t a t u s t o determine  sought  responsibility  primary  h e a l t h and f o rc a r r y i n g out  described  domains p r o v i d e d  they  steps  bore  especially  model.  Informants  sick".  they  on i n f o r m a n t s '  decision-making  health  as  was  from  the available  i n f o r m a t i o n based  I t was o b v i o u s  and judgement p l a y e d  here  that  sources  on s p e c i f i c a l l y informants'  a tremendous r o l e  own  i n theanalysis  91  phase. After their  Information  own t r e a t m e n t  regimes,  selected.  A last  informants  put their  From  factors  working with more  obtain for  regimes  important,  experience  this  when  action. i n this  As a r e s u l t ,  rich  c a n be  have been  analysis can help  v i e w o f what  worlds,  meanings  had  m o d e l was  accounts  with diabetes  a n d manage t h e i r  their  Into  created  chapter,  f o r health professionals to consider i n  an " i n s i d e "  personal  treatment  then  information they  i n the decision-making  individuals  informants.  within  step  using  informants  the a n a l y s i s of informants'  essential  But  was a n a l y s e d ,  living  insight  illness,  with  health professionals  with diabetes into  how  a n d make  background,  gained.  identified.  was  like  informants health decisions  experiences,  and  92 Chapter  5  DISCUSSION This discover  research how  diabetes.  Chinese  The  exploring  on  the  how  what t h e y  how  m o d e l was  This  model  of  results  this  to  study  process  t o seek  help  process sought  resources,  obtained. as  Based  was  f r o m whom t h e y  they  to  informants'  decision-making  Information  meant  from the  sought help,  living  diabetes.  a decision-making constructed  managed  of  with diabetes  a decision-making  results  the  experience  managed t h e i r  to  towards  information from h e a l t h care  d i d with the  relate  they  approach and  were d i r e c t e d  living  accounts,  used  experienced  informants'  when i n f o r m a n t s they  phenomenological  study  diabetes.  d i s c u s s the  and  and  the  persons  what  d e s c r i p t i o n s of  influenced  will  like,  This  manage t h e i r  help,  this  Chinese  informants'  personal  4,  was  used  elderly of  informants,  formulated.  and  aims  what the  with diabetes Chinese  study  This  presented  pertinent literature  chapter  in  and  and  Chapter research  findings. Two It inquire  was  the  into  showed an  informants'  the  type  intuition, noted  topic  age-old  decision-making: "rival  of or  the  quantitative,  accounts  between  scientific,  knowledge", wisdom.  famous R e n a i s s a n c e  Decision-Making that  led the  of decision-making.  division  that Raphael  philosophers  Approaches to  two  Literature  approaches  rational  known s o m e t i m e s as  the  painting,  from r i g h t scientific  to  sharp  division  i n which  left  he  In terms  approach  or  an  to  studying  common  of  of  the sense,  Mumpower opinion  arranged  (1978) in his  the  whether  intuitive  to  review  a p p r o a c h and  Hammond, M c C l e l l a n d , a n d  showed  researcher  they  took  approach  to  a  93 understanding and  nature,  including  human p e r c e p t i o n ,  judgement,  thinking. Even by t h e mid n i n e t e e n t h c e n t u r y , t h e debate  two in  approaches Hammond  types  of decision-making  et al.,  bitterest  line  which  the frontier  been accused  obscurantism, emotions of  by t h e i r  of blind  opponents,  issuing  false  history  or the arts  (and begin The making  public  i n their  standards  turn,  charged  the impossible,  of undertaking  when q u i t e p l a i n l y  what t h e y  between r a t i o n a l  assumptions  to explain soul  t h e y do n o t  are. (p.2) a n d common s e n s e  i s based  on v e r y  and b e l i e f s .  making approaches s i t u a t i o n s  of the  champions o f s c i e n c e ,  claims, promising  them too)  i s evident as each  philosophical  i n favour  or the states of the individual  t o understand debate  rejection,  and have,  prospectuses,  t o change  knowledge  a d v e r s a r i e s of i r r a t i o n a l i s m and  the ambitious  making absurd  "rival  territories.  f o rn o n - s c i e n t i f i c  prejudice, of reliable  without  (cited  with the precise  between t h e i r  of the deliberate  ascertainable truth;  their  of these  c l a s h e s have been concerned  marks  Berlin  time:  T h o s e who made l a r g e c l a i m s have  Isaah  1978) d e s c r i b e d t h e s t a t e  of knowledge" d u r i n g t h a t  The  went o n .  between t h e  decision-  different  Rational decision-  i n an o b j e c t i v e manner.  This  type  o of d e c i s i o n - m a k i n g Rational  choice  decision-making, eliciting actions  focuses  theory, a theory which lists  a l l feasible  will  alternatives  on a c h i e v i n g h i g h l y  the steps actions,  supports  valued  outcomes.  rational  t o solve a decision-problem as d e c i d i n g what c o u r s e s  of  l e a d t o what outcomes, and r a n k i n g a l l f e a s i b l e (Elster,  1986).  94 Common  or  lacks  often is  neither analytic  intuition  and  external  related  considered ignores  t o be b e y o n d  rational,  scientific  intuitive, making,  process  Conversely,  the sharp  criteria  t h a t make s e n s e  sense  decision-making  logic  used  by people  only.  complex also  adopted  effective  1982).  And  to certain  formulated  on making  a highly  versus decision-  t h e most  valued adheres  to the individual.  does  over t h e  between t h e  Rational  decision-making  logical  outcome. to certain  Because  common  not comply with the p r i n c i p l e s of  who s u p p o r t  i n their  methods  been  decision-making.  rational process  As h e a l t h p r a c t i t i o n e r s  situations  i t may b e  been  that adheres  division  may b e c o n s i d e r e d a s a n i l l o g i c a l mind  (Thorne,  of decision-making  t o achieve  common s e n s e  As i t  And s i n c e i t  I t has a l s o  process  t h e r e f o r e , places emphasis decision  alone  to the individual.  method  common s e n s e  analytic  process.  t h e o r i e s have  support  i n t h e mind  sense  of decision-making i s  of logic,  thought  i t represents a creative  Numerous d e c i s i o n  common  and p e r s o n a l meanings.  thought  principles  t h a t makes s e n s e  decision-makers.  comprehension and reason,  as an i r r a t i o n a l  and s t i l l  type  experiences  as an i l l o g i c a l  criteria  and  This  hand, does not  verifiable,  considered t o exist  reality.  t o past  the formal  labelled  years  on t h e o t h e r  nor e m p i r i c a l l y  i susually  considered  yet,  decision-making,  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  follow Being  sense  that exists  continue  professional  of decision-making  and r e s p o n s i b l e c h o i c e s .  decision-making, i t  to  encounter  practice, t o guide  i n the  they  them  have  i n making  95 Making Health scientific  professionals rationality,  decision-making.  advanced  k n o w l e d g e and  emphasis  on  relating  to  measured, clinical  health once  to  discover  to  this  often  The the  there  methods  the  has  be  of  the chain  causal  universal  There  increasing  verifiable  that  a l l phenomena  logical  way  influences  i n form, only  and  become be  that  effectively  up  rationality  progress,  but  is  led  and  a most r a t i o n a l  concerns,  to  they  w h i c h must t h e n  scientific  i s not  for patients'  of  professional, therefore,  Therefore,  are  1984).  of  of  o b j e c t i v e l y observed  e f f e c t of  health  on  accumulation  been an  presupposes can  c a u s e and  assumes d i s e a s e s  most r a t i o n a l and  to  practice  phenomena have been o b s e r v e d ,  particular "fact".  explanation  their  Concurrent with  sickness  logical  logical a  and  task  (Helman,  based  thus conformed  rationality  these  content  often  o b j e c t i v e , e m p i r i c a l , and  " f a c t s " , the  discovered.  Decisions  technology,  obtaining  Scientific  have  and  rational  results.  Health  there treat  is  and  often  the  disease. Young  (1979) p o i n t e d  professionals and  claim  that  is that  rationally. partly  since  rationality,  system's  predicated overlook  on  the  success issue  of  world's medical  pointed  out  Western  and  i s only  of  this  how  beside  preventing  claim one  effectively  is  of  a  by  the  since  point,  only  dimension  same c l a i m  or  the  behaving  determinant  L a s t l y , the  i s often at  one  rational  s y s t e m s , when,  capable that  health  is uniquely  e f f i c a c y measures o n l y  effectiveness.  professionals  i r o n y as  everywhere are  Young a l s o  relevant,  medical  health  people  the  Western medicine  e f f i c a c i o u s among t h e  truth  out  of  medical  Western i t is  treating disease, p r a c t i c e s manage  but illness.  96 Moreover, c r i t i q u e r s voiced  their  "biomedical  health  model". and  ignoring their  attributions  In a d d i t i o n , the  towards accurate personal  illness Within  promoting  their  the  field  emphasis  known as  when p a t i e n t s '  illness  t o h e a l t h p r o f e s s i o n a l s as explanations  diagnosis  as  more  m o d e l may  and  meanings  nursing,  nurses on  direct  therapy,  p a t i e n t s may  attach  the  as  there  has  b e e n a move  "thinking  importance  of  critical  explanations  (Gordon,  than  practice  that c r i t i c a l  forth.  t h i n k i n g seeks  "appearances" grasped  t o o l s have been used  in a  logical  systematic  and  direction  as  rational to  and  important  be  and  how  (Mardiros,  1987).  systematically  logical  what p r a c t i t i o n e r s  are  elicited,  and  priorities  Nursing  concepts  nursing  practice,  which  by  common  way.  (Riehl  are  The  nursing  approach,  should  to  to direct  look  sense  not,  be  the  how  Roy,  process, nurses  data  are  to  established  i n a d d i t i o n , are  essential  1980).  sets  of  components  underlying assumptions, and  gives  their  f o r , which  scientifically-based  identify  s u c h as  adaptation  nurses  which are  models,  constructed,  related  by  problem-solving  observations  modes o f  put  and  1987).  Specific  a  for explanations  therefore, consider  towards  thinking,  exist  deeper  to  practitioners".  standards N u r s e s may,  their  while  precise, analysis is logical,  criteria  own  are  where d e s c r i p t i o n s are and  the  1984).  of  image o f  their  biomedical  cultural  (Barnard,  the  Nurses place  or  come t o be  concern  about  i n importance  professionals regard  "rational".  what has  They expressed  secondary  attention  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  discontent with  explanations considered  of  of  values,  Nursing  models  and  97  guide  nursing  selecting  practice  by s e t t i n g  treatment modalities  identification.  Hence, both  i n response  the nursing  models a r e e x t r e m e l y e f f e c t i v e a  cohesive,  rational,  Nurses  s t i l l  compartmentalize  patient  Mardiros is  the inherent  common t o a l l h e a l t h easy  f o rnurses  modalities who l i v e the  with  context This  often  that  that  "irrational"  adhering  t o an "inner  clients  perspectives.  by health  or " i l l o g i c a l " .  the choices  nursing  confines,  i t i s  treatment  a r e t h e ones  their  daily  of the informants'  care i n  this  that  study  informants  made s e n s e  methods o f showed  f a r from  a v a i l a b l e t o t h e m a n d made logic"  informants  and l o g i c a l  pathways were  In fact,  decision-  Although  professionals,  decision-making  analyzed  by  ethnocentrlsm  and s e l e c t  regarding  d i d not conform t o the s c i e n t i f i c  informants'  that  lives.  from t h e i r  used  care.  As s t a t e d  influencing  these  goals  but ignore  s t u d y gave an a c c o u n t  decision-making  to patient  health.  factor  Within  a n d make d e c i s i o n s  making process,  good  to set therapeutic  of their  nurses t o adopt  environments  and t e c h n o l o g i c a l  sciences.  effectively,  approach  undeniable  biological  guide  nursing  and see the e l i m i n a t i o n of  synonymous w i t h  (1987), a major,  and  t o problem  however, w i t h i n  care  goals  process and  tools that  and systematic  function*  symptoms a s b e i n g  therapeutic  carefully  decisions  t o them and  their  situation. Health significant Prompted decisions illness,  professionals factors that  by a lack  have a l s o influence  of understanding  and choose  health  actions  numerous models have been  recognized client  that  there are  decision-making.  o f how c l i e n t s i n response formulated  by  make  to their researchers  98 within  the  health  sciences  field  to  explain  client  decision-  making. Suchman's model illness carry  behaviour  out  medical  (2)  (4)  five  At and  health  services  family  to  use  secure  undertake  Other  of  individuals'  need of  Twaddle  take  sickness. (1) is  is  age,  sex,  factors  (1979),  significant;  seven  the  (3)  most a p p r o p r i a t e , with  the that  role,  and  and  (5)  related  and  (3)  medical-care  clients'  health  of the  and  last  of  to  factor  is  by  response  explain  necessary  has  occurred;  clients  decision (2)  c e r t a i n types  and  the  or  degrees  appropriate.  recovers,  may  that: change  p a r t i c u l a r type  p a r t i c u l a r treatment agent  person  decision-  experience  health  agent are  the  illness.  client  clients'  a  and  their to  steps  when t h e y  (4)  to  income  influenced  by  and  family  the  sick  health  use  beliefs,  include  (6)  or  p r e d i s p o s i t i o n of  manner  process  treatment the  symptom  behaviours.  that  A  of  (1)  individuals' ability  i s needed; a  and  sequence  recovery  f a c t o r s s u c h as  logical  help  find,  predisposition i s influenced  the  may  (5)  of  i n d i v i d u a l m u s t make  services,  from normal  is preferable;  be  sick  i n his attempt  These steps  outcome w i l l  stages:  education,  decision-making  cooperation  the  role,  include  for such  illness  some c h a n g e  help  identified  community r e s o u r c e s .  outlined  i n the  seek,  upon the  This  patterns  clients  health  services, considering  perceptions  the  social  (1968) e x p l a i n e d  services.  availability  making,  of  i s dependent  s u c h as  how  transitional  each stage,  Andersen's model  on  model  dependent-patient  decisions  attitudes.  His  assumption  rehabilitation.  variables  influence  care.  e v e n t s as  contact,  care  that  medical  experience,  (1965) f o c u s e d  becomes  of  setting of The  99  impaired, or d i e s . These models were v e r y h e l p f u l as they focused  their  a t t e n t i o n on c l i e n t decision-making and o u t l i n e d steps people go through  i n seeking medical c a r e .  identified  f a c t o r s to e x p l a i n why  professional assistance. unique  The authors  also  i n d i v i d u a l s d i d not  use  However, these authors took on a  p e r s p e c t i v e as they concentrated on s t u d y i n g how  clients  sought h e l p from h e a l t h p r o f e s s i o n a l s . In c o n t r a s t to the p e r s p e c t i v e s taken by these models, the study presented here  I d e n t i f i e d who  informants regarded  h e a l t h care resources to help them manage t h e i r Informants  as  illness.  c o n s u l t e d with people not o n l y from the p r o f e s s i o n a l  domain, but a l s o people from the popular and  f o l k domains.  T h e r e f o r e , people from the p r o f e s s i o n a l domain o n l y acted as one source of i n f o r m a t i o n amongst many resources i d e n t i f i e d  by  informants.  Moreover, t h i s study showed t h a t each h e a l t h care  resource was  p e r c e i v e d by Informants  purposes  a t d i f f e r e n t times.  as s e r v i n g  Thus, the c h o i c e of which  resource to use depended on whether Informants resource was and  distinct  felt  the  a p p r o p r i a t e f o r the s t a t e of h e a l t h they were i n ,  f o r the type of help they needed. Although the models o u t l i n e d d i s t i n c t steps  individuals  take i n t h e i r p u r s u i t of medical c a r e , the study, i n c o n t r a s t , was  based  of how  on informants' accounts, and gave a f u l l  description  d i f f e r e n t steps of the decision-making process were put  together i n t o a meaningful whole.  In a d d i t i o n , readers  may  come to view i l l n e s s not as a d i s c r e t e occurrence, but as a constant s t a t e experienced by informants as they cope with and manage i t In t h e i r d a i l y  lives.  100 Lastly, to  take  to  them.  set  so  these  models o u t l i n e d  may a c h i e v e  they  These  ideas are  goals  avenues o f care considered  more c o n g r u e n t  by health professionals for their  this fact,  study  were  guidelines  unique  t o help  personal  behaviours  processes,  followed.  values  individuals  interventions A second  cultural  determine  values.  o f the A third  assess  established  throughout  The  criteria  were s i m i l a r identified based  whether  used  on informants*  personal  three  the  treatments  situation,  the  evaluative  or other symptoms.  analyze  whether  s o c i a l and  i s when  process.  from t h i s  evaluative (1983).  were r i c h  research  and f i l l e d  a holistic  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  dally  i nthe  lives.  study  processes  However,  individuals  of their  relief,  relationship i s  health-seeking  by informants  context  whether  individual's  and t h e i r  a trusting  accounts  health  lives.  or changing  evaluative process  meanings, and demonstrated  basis  dally  i s problem  i s when i n d i v i d u a l s  a n d Malman  with  r e c o m m e n d a t i o n s s h o u l d be  in relieving  i n some w a y s t o t h e  by Becker  in their  i s congruent with  individuals  These  They s e r v e d a s  identified  whether  were e f f e c t i v e  e x p l a n a t o r y models  how i n f o r m a n t s , i n  systems, and t o choose  evaluative process  provided  The f i n d i n g s o f  I n d i v i d u a l s uset o determine  evaluative process  information  priorities  make d e c i s i o n s c o n g r u e n t  make s e n s e a n d w h e t h e r The f i r s t  clients  beneficial  own c r i t e r i a .  be accommodated (1983)  be  the  clients.  informants.  and b e l i e f  or criteria,  with  described  on t h e i r  informants  a n d Malman  suggestions  they  t o the  that could  Becker  where  i nthat  made d e c i s i o n s b a s e d  criteria  their  differed  to  for  information with  v i e w o f how i l l n e s s on a  101 Kleinman in  the  sense  disease  that  i s based  specific  to  m e a n i n g we  the  whether felt  our  on  perceive,  study  believed  remain  information  the  "right"  was  factors that  influence  to  i l l n e s s , and  examine  the  (1980) s u p p o r t e d  context  Illness  i n which  influences  he  or  she  face  of  during  support with  the  the  the  showed  of  and  by  avoiding  on  a  "cold"  judged  whether  them.  they  Again,  professionals  these  have  an  informants  meanings  how  example,  caused  with  health  how  necessary aspects To  of  points  part.  with  them t o  live.  these  to  explore  informants  meanings  to He  Besides that  family,  and  assign  influence  asserted  by  the  that  social  attending  The  to  As  into  explore  the  a  findings health  their impact  to  person's  the  should  that  consider  the  Is  be  clients  from t h i s  It  of  treatment  study  professionals  lives. of  illness  networks  professionals  t h e y need  illness  persons'  people's  economic problems  Engel.  diabetes,  relate  health  recovery.  made b y  f i t their  the  they  need  is influenced  i l l n e s s and  for  the  advocated  social,  individuals  individuals  and  is a  i l l n e s s , Engel  aware  for  For  of  decision-making  Engel  of  need  systems  them based  "compatible"  cultural  which  the  for  with  explanations  constructed  other  shaped  cope  here a l s o  importance  healthy,  addressed  to  o c c u p y and  i l l n e s s was  stressed  and  sickness,  decision-making.  findings  health  of  presented  their  was  is culturally  experience,  p o s i t i o n s we  health  Information  their  illness  i l l n e s s were c u l t u r a l l y  they might  the  that  explanations  The  "coldness"  so  we  social  the  I n f o r m a n t s who  foods  on  influence  excessive  how  employ.  meanings of direct  (1978) s t a t e d  work  how also  i l l n e s s on a l l  lives.  summarize, h e a l t h  professionals  have  frequently  based  their  practice  principles promote  used  rationality  and adhered t o  i n r a t i o n a l decision-making,  t h e image o f n u r s e s a s " t h i n k i n g  have p l a c e d tools  ons c i e n t i f i c  emphasis  on c r i t i c a l  i n the attempt t o  p r a c t i t i o n e r s " , nurses  thinking  and used s p e c i f i c  t o e f f e c t a na n a l y t i c and a systematic  decision-making.  The f i n d i n g s  demonstrated  informants  that  from t h i s  adhered  approach t o  study  have  t o an inner  logic  made s e n s e t o t h e m a n d t h e i r s i t u a t i o n a s t h e y made regarding In  their  of c l i n i c a l  have a l s o  decision-making,  recognized  exploration  t o include  client  models were  formulated  to explain  they pursued  professional  (1965), A n d e r s e n assumption that to  help  showed  themselves.  make d e c i s i o n s a s  The m o d e l s p r o p o s e d  illness.  identified  that  health  priorities  may c o n f l i c t I t i s clear  with  that  used  of care  priorities  and p r o f e s s i o n a l s '  discussed.  This  set by individuals  and t h e c u l t u r a l meanings they a s s i g n  clients*  one  set by health  of  section,  asonly  i n d i v i d u a l s * and professionals'  are influenced  In the next  the findings  by informants.  of care  Illness.  upon t h e  professionals  professionals  priorities illness  b y Suchman  (1979) a r e b a s e d  In contrast,  o finformation  their  Decision-making  i n d i v i d u a l s p r i m a r i l y use h e a l t h  a m o n g s t many s o u r c e s  professionals  t o extend  how c l i e n t s  (1968), a n d T w a d d l e  research  study also  t h e need  health  decision-making.  care.  t h e m manage t h e i r  from t h i s  decisions  health.  the study  professionals  that  bytheir explanatory  issues  explanatory  models  to their  and d i s c r e p a n c i e s models w i l l be  between  103 Issues  and  Discrepancies  between C l i e n t s '  Professionals' Many a u t h o r s health  Cassell  illness.  He  diseases,  clients  sense  of  the  Illness those and  explanatory  cure and  while  physicians  between  models  illnesses meaning  that  that  attempt  are  often  the  to  of  the  clients'  (1984) expanded  on  the  illness  and cure  challenges  accompany  Is  the  i s the  they,  with  how  to  the  physical  personal  experience  also  the  people;  the  to  i n terms  of  255).  that  biological  concerns are  place  various  clients  out  i t ,medical  (p.  gave  p a t i e n t , and  particularly  s i g n i f i c a n c e of and  of  how  he,  this  his relationship  steps  (1984) d e f i n i t i o n ,  how  Illness  issues"  and  behaviour,  the  the  unwell;  origin  meaning they a s s i g n  and  of  patients' experiences  have p o i n t e d  significant,  and  He  he  takes  to  remedy  (pp.68-89)  authors  "biologic  response  his being  i t effects his  contrast  (1978) put  to  Helman's  includes  In  him,  concept.  illness:  subjective  situation, to  of  i n t e r p r e t the  other  According  often  discrepancies  i s , illness  around  event;  but  that  following definition  only  clients'  Models  disease.  Helman the  argued  That  the  Health  (1979) d i s t i n g u i s h e d between d i s e a s e  identity  distress. of  have a d d r e s s e d  p r o f e s s i o n a l s ' and  illness.  Explanatory  and  health  to  on  those  health  therefore  health  'real',  disease,  illnesses, different  As  that  view  Kleinman et a l . assume  that  clinically  psychologic  (1984) s a i d  not  experiences.  professionals often  searching  and  professionals often  processes.  i n t e r e s t i n g than  importance  of  view their  more b a s i c ,  Helman  illness  and s o c i o c u l t u r a l  Western  for physiologic  doctors "facts".  104  When c o n f r o n t e d all  to relate  Good and "is  to  their  task  referents i n order  f i n d i n g s from t h i s  possess.  models  The  of  of  the  As  physician,  relating  to diagnose  experienced gave t h e i r described  well  worked,  the own  then,  symptoms  a  to  disease  t o ask  these  by  making.  These c r i t e r i a and  from  study,  to  own  described on  and  their  "not  our  their  they  of  how  personally also  they  The  i n the  own  illness  l i v e s , and  meanings  determine  shown  when  and  findings,  significantly affected decision-  i n f l u e n c e d how  t h e r e f o r e , gave Chinese  knowledge  how  sick".  Informants  c h o s e m e t h o d s t o manage t h e i r  of  of  their  their  i l l n e s s as  informants as  delineated  explanations  h e a l t h and  "sick"  informants  e x p l a n a t o r y models add  their  of  differing  identified  giving  In a d d i t i o n ,  set  decisions  They  t h e m make s e n s e  terms helped  for help.  clearly  helped  definitions  criteria  this  illness.  of d i a b e t e s  like  the  health professionals  study  informants  impact  concepts to  as  identified  and  in this  of  i l l n e s s which  diabetes  assigned  models  As  study  individuals  Informants  explanatory  experience.  that  of  (p.170).  explanatory  their  try first  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 .  a p a t i e n t ' s d i s c o u r s e by  biological  causes  p a t i e n t ' s symptoms, t h e y  (1981) s t a t e d , the  'decode*  The  who  these  Good  entity"  own  with a  of  rich  elderly the  made h e a l t h  illness.  The  data  d e s c r i p t i o n s of  the  informants  diabetes  experience  and  with  management  of  d iabetes. The shaped  informants'  the  views are  interactions  professionals. professional  For  doctors  the  also  informants  example, the were  important  the  had  informants  people  who  because  with  they  health  viewed  dealt with  that sickness  105  episodes  and were e x p e r t s  Informants doctors  emphasized  unless  exhibited  their  with  field.  conditions  these  Barnard  It  i s the physician  doctor-patient  patient  sense,  both  identified  when t h e  doctors  i n the health  problems that  may  exist  expertise,  that  who u n d e r s t a n d s t h e the patient's  p o w e r , a n d authority  i nthe  appropriately  d i a g n o s e s and recommends w h i l e accurately  and complies  the  to the  commands. Anderson's  professionals' as t h e major  patients  (1985) d i s c u s s i o n the discrepancy  perceptions reason  and h e a l t h  professionals  see the treatment  that  may s e e i t a s a n o t h e r  having diabetes. f o r the f i r s t Jones,"  He a s k e d time  regimes.  I I diabetes.  your  blood  This  and I t could  health he  said  of the problem of  t o Imagine a p a t i e n t  being  I I diabetes.  "You have a d u l t  means y o u h a v e lead  that  i n their  as a s o l u t i o n ,  part  she h a s Type said,  many  sickness  He s t a t e d  may d i f f e r  While  regime  readers  the doctor  Type  between p a t i e n t s ' and  f o r noncompliance.  professionals patients  of the problem of  of the patients*  of treatment  "Mrs.  topic  I t t o solve  understanding  told  i f they  the importance of  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 and  n o n - c o m p l i a n c e , he c i t e d  episode  and/or  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  answers questions  I n R.M.  health  "troubling" the  advice.  and not t h e p a t i e n t  The p h y s i c i a n  physician's  disease.  At times  emphasized  m o d e l , and must a p p l y In that  unequal.  were s e r i o u s  also  (1984)  of  t o avoid  h a s b e e n a much d i s c u s s e d  the physician-patient  biomedical  tried  symptoms.  experts'  in  problem.  they  informants  Compliance care  that  obvious physical  were c o n s u l t e d , complying  i n the treatment  to serious  onset or  t o o much s u g a r i n complications.  I  106 have  put together  a comprehensive  and  i fyou f o l l o w i t f a i t h f u l l y  the  long  do  term complications  i salter  your  eating  snacks and reduce your until  you lose  program an  f o r you which  exercise  bike  regular the  basis  results  pills  disease.  medical  treatments  by the findings  Information  they s e t s p e c i f i c  lives. was  how t h e y R.M. in  criteria  of this  may b e a c c o m m o d a t e d one c r i t e r i o n should  lived  daily  their  Anderson  but rather  professionals.  finger levels  (1985)  on a and  record  start  y o u on  continue  illness to  may c o n s i d e r  Anderson's study.  As  may  having the  t o understand  as  view informants  from h e a l t h c a r e them i n making i n the context  resources, health  of their  s e t by the informants  not interfere  significantly  with  lives. f u r t h e r argued  the problem of non-compliance  patient,  R.M.  t o guide  information  fitness.  many p a t i e n t s  patients  they collected  For example,  that  that  they w i l l  that  is  that  sugar  fail  of view,  and i n a p p r o p r i a t e .  decisions  your  using  (p.32)  professionals  unacceptable  analyzed  swimming, and  w o r k , we w i l l  made t h e p o i n t  point  exercise  cardiovascular  blood  doesn't  per day  an  r e g i m e s a s more o f a p r o b l e m t h a n  from the p a t i e n t ' s  supported  walking,  your  injections,  t o prevent  what y o u need t o  t o 1200 c a l o r i e s  to stick  your  and i f t h i s  As h e a l t h  prescribe  need  f o ryou  be a b l e  I have a l s o d e s i g n e d  t o check  Thus, t h e author view treatment  intake  t o increase  or i n s u l i n  plan  b y g i v i n g up s w e e t s a n d  involves  In a d d i t i o n , you w i l l  y o u may  of diabetes,  habits  60 l b s .  treatment  that  t h e major  i s not the behaviour  the inappropriate  He c o n t e n d e d  that  what  expectations i s labelled  of  factor  of the health  as non-  107 compliance  Is really  professional  and t h e p a t i e n t .  practitioners diseases. their  In fact,  He a d d e d  than  The  that  take  based  based  to the  bear  p r a c t i t i o n e r s make  compliance with that  they dealt maintain  with  a good  situation,  many  problems showed  explanatory  models  on t h e other  hand,  needs I n  i t was  regimens.  Important  into consideration.  provided with  to regain  informants  this  informants dealt with  Barnard's  professional  l a b e l l e d as  Western h e a l t h examination  these  of  regimes,  doctors,  their  information  reviewed  s t u d y went a s t e p with  data  I n an attempt t o  t o conceal  being  As  informants  some c o n t r o l o v e r  chose  t o avoid  Western  additional  to treatment  the s i t u a t i o n differently.  to  with  the pressures  Although  t o adhere  relationship with  when  regimes and f a i l e d  be l a b e l l e d a s n o n c o m p l i a n t  The s t u d y a l s o  of compliance,  how  rather  problems e x i s t e d  treatment  even though the l i t e r a t u r e  interactions In  showed t h a t  prescribed  medical  Western doctors  Therefore,  The p a t i e n t ,  how i n f o r m a n t s d e a l t  a t t h e same t i m e  these  here  treatment.  i tdescribed  decisions  on t h e needs o f t h e d i s e a s e  informants might  expressed  responsibility for  o n h i s o r h e r own p e r s o n a l  presented  the informants'  prescribed  ultimate  about  disease.  professionals  result,  and  health  treatment  study  health  as  patients  t h e needs o f t h e p a t i e n t .  relation  out that  disease.  makes d e c i s i o n s  a  He p o i n t e d  p r a c t i t i o n e r s communicate t o p a t i e n t s  while  their  regarding  problem between t h e h e a l t h  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 '  diseases  treating  a communication  problems  from  non-compliant.  addressed the f u r t h e r and i n their  professionals.  of noncompliance  (1984),  he  108 attributed  i t t o the d i f f e r e n c e  by  clients  and  to  I l l u s t r a t e these problems of  observed  that  stomach a c i d  health  that  professionals.  some p e p t i c comes f r o m  between-meal s n a c k s  and  ulcer  food  that  upset  intake  the d e s i r a b l e  is central  itself,  Harwood to take  balance  Roth  studies  that  recommended (1984)  orange  explained juice  they believed  between  used  (1962)  believing  avoided  because  frameworks several  cited  patients,  refused  supplement t h e i r potassium  He  "compliance".  anatacids.  Puerto Rlcan patients  oranges  in interpretive  " h o t " and  to Puerto Rlcan understandings  to that  "cold"  of h e a l t h  and  disease. This  study also  informants'  interpretive  professionals'. factors  that  regimes. be  that  and  attributed "cold"  t h e i r foods.  illness  and  t h e i r cause  factors  that  health  Another  treatment of  illness  to  were p r e s e n t i n  individual  d i a b e t e s worked by t h e d i s p e r s a l  of  "poison" in  of  the  body. Informants  different  also  had  unique  types of treatment.  importance  interpretations Many p e o p l e  Others  illness  factors  t o an e x c e s s  had  " h o t " and  " c o l d " and "cold"  might  of " c o l d " "bo"  factors  informants believed medicine  stressed  of s e l e c t i n g types of treatments  "compatible" with themselves.  that  the  i d e n t i f i e d numerous c u l t u r a l  t h e y viewed  " h o t " and  environment  explained her  how  Some I n f o r m a n t s by  e x a m p l e s o f how  framework d i f f e r e d f r o m t h e  Informants  affected  influenced  their  gave e x p l i c i t  that  who  that  the  were  attributed  experimented  their with  q u a l i t i e s to maintain a balance i n t h e body.  In a d d i t i o n ,  an e x c e s s i v e i n t a k e  weaken t h e body, t h e y t o o k  of  foods of  a s some  Western  caution  to take  these  109  medicines in moderation. In conclusion, numerous authors have i d e n t i f i e d discrepancies  between c l i e n t s ' and professionals' explanatory  models of i l l n e s s .  It was  evident from t h i s study that  informants had unique explanatory models of i l l n e s s which guided decision-making.  Informants also perceived  professionals' view of i l l n e s s was  that health  d i f f e r e n t than t h e i r s .  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 i d e n t i f i e d the problems of compliance when health professionals do not take the c l i e n t s ' point of view into consideration, and f a i l to understand and work through the c l i e n t s ' frame of reference.  Besides supporting  what the  l i t e r a t u r e has i d e n t i f i e d , 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 c l i e n t and health professional behaviours. gave e x p l i c i t examples of how  The study  c u l t u r a l factors influenced  informants interpreted their i l l n e s s experience and regimes.  how  treatment  Hence, the issues and discrepancies between c l i e n t s '  and professionals' explanatory models again addressed the need for health professionals to view people's i l l n e s s through the individuals' lenses.  Only by understanding i n d i v i d u a l s '  explanatory models and viewing people's i l l n e s s 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 l i v e s . summary In t h i s chapter, the findings of the research study have been discussed in r e l a t i o n to pertinent l i t e r a t u r e .  Literature  reviewed suggested that decision-making has been t r a d i t i o n a l l y viewed from a s c i e n t i f i c and rational approach.  This approach  has placed emphasis on the i d e n t i f i c a t i o n of cause and e f f e c t of diseases, and physical processes. Although various t h e o r e t i c a l models have been formulated in the health sciences f i e l d to explain health decision-making, they described the c l i e n t s * decision-making process as interpreted by health professionals.  In contrast, the study  presented here gave r i c h and meaningful descriptions of how Informants experienced their i l l n e s s , used health care resources, and managed decision-making in their d a i l y l i v e s . The study also i d e n t i f i e d 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, s o c i a l , and c u l t u r a l contexts of their l i v e s .  The findings also emphasized that understanding  individuals' explanatory models forms the essential building block to establishing a collaborative and meaningful relationship with people.  Ill '  Chapter  SUMMARY, CONCLUSIONS, AND  6  IMPLICATIONS FOR NURSING  Summary and C o n c l u s i o n s This study informants home.  was d e s i g n e d  with diabetes experience  Diabetes  presents  attention  were  therapy  for diabetes  understand  the explanatory them.  experience  informants'  perspective.  This offer  was r e v i e w e d  information t o the study.  types  of i l l n e s s e s  on  literature  culture,  i n order Chinese  from the  i s because t h e r e s e a r c h e r an e x t r e m e l y  rich  source  of data  and i n s i g h t .  t o g i v e r e l e v a n t background  to provide  the researcher  from the  s t u d i e s done on o t h e r insight  for this  to explore  study.  literature  and t o d i s c o v e r a n e n r i c h i n g body o f  t h a t gave a c c o u n t s  meanings t o t h e i r  elderly  e t h n i c group  As s t u d i e s o f d i a b e t e s ,  were u s e d  also directed  the Chinese  that  models o f  with diabetes,  p e r s p e c t i v e , were s c a r c e , o t h e r  This study  perceived  explanatory  models o f t h i s  of l i v i n g  informants  Literature  Chinese  for health professionals to  c o n t r i b u t e to understanding  clients'  of l i v i n g .  The r e s e a r c h e r a l s o c h o s e t o s t u d y  informants'  that  care.  careful  W i t h t h e I n c r e a s i n g number o f C h i n e s e  i tis critical  believed  requires  Patients  p o p u l a t i o n s and W e s t e r n h e a l t h  i n Canada,  t o work w i t h  fordaily  interviewed as the researcher  other  professionals.  that  responsibility  p o p u l a t i o n may h o l d d i f f e r e n t than  illness at  illnesses.  t o some o f t h e most b a s i c a s p e c t s  informants  elderly  and manage t h e i r  a u n i q u e c h a l l e n g e among c h r o n i c  Moreover, proper  illness  how C h i n e s e  m e l l i t u s was c h o s e n t o be s t u d i e d a s i t  w i t h d i a b e t e s assume p r i m a r y  this  to explore  Illnesses.  o f how c l i e n t s  assigned  different  112 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  was used as a framework t o guide the methodology of t h i s  study.  T h i s method was seen as a p p r o p r i a t e as t h i s study aimed to d e s c r i b e and e x p l a i n the human experience of l i v i n g d i a b e t e s , i n the complexity of i t s c o n t e x t .  with  Informants  were  r e c r u i t e d 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 .  Data were c o l l e c t e d through  i n t e r v i e w s with nine Chinese  informants who were diagnosed  l a t e onset d i a b e t e s and were undergoing home.  extensive  I n s u l i n therapy a t  A l l of the informants were o l d e r a d u l t s and were  g e n e r a t i o n Chinese  informants' homes.  Interviews were conducted  used  Into  Data c o l l e c t i o n and a n a l y s i s occurred  G i o r g i ' s phenomenological  to guide data  In the  i n Chinese and  These i n t e r v i e w s were then t r a n s l a t e d  E n g l i s h and t r a n s c r i b e d . simultaneously.  first  immigrants.  A s e r i e s of two t o three i n t e r v i e w s were conducted  tape-recorded.  with  method (1975) was  analysis.  Based on the informants' accounts, n a t u r a l u n i t s were identified  from the data a c c o r d i n g t o meanings d e l i n e a t e d .  The  r e s e a r c h e r then t r i e d t o s t a t e the c e n t r a l theme t h a t dominated these n a t u r a l u n i t s .  F i n a l l y , the r e s e a r c h e r s y n t h e s i z e d and  i n t e g r a t e d the e s s e n t i a l themes i n t o the form of a f i n a l a n a l y t i c framework. formulated. attempt  As a r e s u l t , a decision-making  model was  T h i s model was used by the r e s e a r c h e r i n an  t o organize data t h a t best represented how  clients  experienced and managed d i a b e t e s . As informants r e l a t e d how they experienced and managed d i a b e t e s , they gave e x t e n s i v e d e s c r i p t i o n s of how they viewed diabetes.  Informants  provided d e t a i l e d d e s c r i p t i o n s of t h e i r  113 e x p l a n a t o r y models of their  Illness  and  described  their  of the  illness.  this  Informants  process.  process  on  stated  for seeking help  that  they  i l l n e s s and  first  as  clearly treating  in  evaluated  "not s i c k " ,  or they  f r o m t h e p o p u l a r domain as t o  how  maintain health.  C o n v e r s e l y , when i n f o r m a n t s were " s i c k " , the  and  w h e t h e r t h e y were " 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  o f t e n consulted with people prevent  informants  F i v e d i s t i n c t s t e p s were i d e n t i f i e d  h e a l t h s t a t u s t o determine  "not s i c k " .  from  illness  t h e y viewed d i a b e t e s ,  decision-making  managing t h e i r  to  impact  lives. W i t h i n t h e c o n t e x t o f how  their  the  professional,  folk,  and  t h e y sought  popular domains.  help  Informants  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 x p e r t s i n their  disease while  have a good u n d e r s t a n d i n g culturally-defined themselves  as  additionally  folk  of Chinese  illnesses.  "sick", sought  people  Sot  d o c t o r s were p e r c e i v e d t o concepts  o f h e a l t h and  When i n f o r m a n t s d e f i n e d f r o m t h e p o p u l a r domain were  support  w i t h d a i l y management o f  their  illness. Upon c o l l e c t i n g resources,  informants  i n f o r m a t i o n from the d i f f e r e n t then analyzed  s p e c i f i c a l l y defined c r i t e r i a . informants put  then created their  them i n t o Findings  explore Only  After own  i n f o r m a t i o n based  i n f o r m a t i o n was  unique  treatment  on  analyzed,  regimes  and  action. f r o m t h e r e s e a r c h s t u d y p o i n t t o t h e need  health decision-making,  by u n d e r s t a n d i n g  "make s e n s e "  the  health care  of t h e i r  from  the c l i e n t s ' p e r s p e c t i v e .  c l i e n t s ' e x p l a n a t o r y m o d e l s and c o n d i t i o n s and  to  treatment  how  regimes  h e a l t h p r o f e s s i o n a l s b e g i n t o work c o l l a b o r a t i v e l y  with  can  they  114 clients. F i n d i n g s a l s o r e v e a l e d how care  r e s o u r c e s , and when and  addition, medical will  informants  from the i n f o r m a n t s '  The  results  help h e a l t h p r o f e s s i o n a l s reevaluate the r o l e  they  p l a y as  resource  Implications The f i n d i n g s o f t h i s nursing practice.  explore  clients'  processes  Include  keeping  h e a l t h p r o f e s s i o n a l s may  for Nursing P r a c t i c e  study  First,  explanatory  The s p e c i f i c  how  persons.  suggest  nurses  numerous  must  skills  listening  information  i s true, respecting c l i e n t s '  empathy  and  responses,  to clients  clients  i s meaningful and most  so nurses  as they  believing  relate  may with  with  may  clients,  that the  clients'  "inner l o g i c "  t o them,  important,  being  as t o  sensitive  s h o w i n g warmth and  establish a truly each other  to  effective  r e q u i r e d of nurses  attentively  to c l i e n t s '  to clients,  skills  decision-making  r e s p o n s i b l e and  an open mind when r e l a t i n g  "makes s e n s e "  Implications  develop  m o d e l s and h e a l t h  i f they are to provide  health care.  with  with  perspective.  become more e f f e c t i v e  what  In  the i s s u e of compliance  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  for  health  f r o m whom t h e y s o u g h t h e l p .  the f i n d i n g s addressed  regimes,  perceived  unique  bond  a s g e n u i n e human  beings. Besides  exploring clients'  decision-making examine  their  decisions. have t h e i r treat  processes,  own  explanatory  that  e x p l a n a t o r y m o d e l s and e v a l u a t e  explanations  illnesses.  m o d e l s and h e a l t h  i t Is a l s o c r u c i a l  I t i s recognized own  explanatory  t h a t both of i l l n e s s  clients  how  t h e y make  and n u r s e s  may  and p r e f e r r e d ways t o  Attempts t o understand  models a r e n e c e s s a r y  nurses  each  other's  in establishing  a  cooperative  115 working  relationship  researcher  advocates  between t h e c l i e n t that  the nurse.  i n the c l i e n t - n u r s e  f o c u s s h o u l d n o t be d i r e c t e d health decisions.  and  Nurses  entirely  on how  should also  not  engage i n a c o l l a b o r a t i v e  where b o t h and  parties  jointly  negotiate strategies Another  reevaluate  roles  t h e y p l a c e e m p h a s i s on treatment  their  test  range.  i n the p r o v i s i o n t h e use  exhibit  results  may  serious  physical  In a d d i t i o n ,  with the  need  care.  data.  to benefit  t o be  disease-oriented,  themselves  obtaining  clients  T h e y must a l s o  d o c t o r s , a r e p e r c e i v e d by c l i e n t s  i s a p p r o p r i a t e , and  on  normal  n u r s e s must  t h e y 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 .  t h e y s h o u l d ask  the  symptoms o r when  results,  the t e s t s  i n c r e a s e d assessment  to  As  t e c h n o l o g y and  increased reliance  i f they perform  ask or t o  r e a s s e s s what  If nurses,  solely  treatment  whether t h i s  whether t h e y p e r f o r m the r o l e  like and role  effectively  responsibly. T h i s s t u d y showed t h a t the nurse's  trends that  l e a n towards s e l f - c a r e  important  r e s o u r c e s and Nurses  who  roles client  adopt  role  i n f o r m a n t s had  identifying  have  o f them.  show measurements t h a t d e v i a t e f r o m a  themselves  and  situation  i d e n t i f y them a s r e s o u r c e s  n u m e r i c a l v a l u e s of t e s t  role  nurses  nurses  of h e a l t h  of d i a g n o s t i c  objective,  obtain  i s that  own  clients  the c l i n i c a l  from the s t u d y  the  make  Instead,  r e l a t i o n s h i p with  reconstruct  of d i s e a s e , c l i e n t s  o n l y when c l i e n t s  clients  t h a t a r e a c c e p t a b l e t o each  Implication  their  relationship,  impose t h e i r  h e a l t h d e c i s i o n - m a k i n g methods on c l i e n t s . should  The  in health care. and  health  t o p l a y i n a c t i n g as advocates  these r o l e s  difficulty  as  in health they  With  in  societal  promotion,  nurses  information decision-making.  facilitate  decision-making  116  should  take  into  understanding sensitive  account  choices available  n e e d s , and  t o them.  information that helps way,  clients  beneficial and  may  e x p l a n a t o r y models.  By  e x p l a n a t o r y models, n u r s e s w i l l  clients'  to c l i e n t s '  clients'  to  help c l i e n t s  Nurses w i l l  a l s o be  increase c l i e n t s '  make i n f o r m e d  t o them b u t a r e  learn  with  about  able to  provide  knowledge.  d e c i s i o n s that are  congruent  be  their  not  In t h a t only  personal  values  beliefs. The  s t u d y a l s o showed t h a t c l i e n t s  health decision-making. resources  Nurses should  in planning care.  open mind and  be  their  effectively.  illness Lastly,  consulted  as  of  h e a l t h and  to  work w i t h  a c c e p t i n g of  informants they  have p o i n t e d  culturally-defined clients  who  attempt  belong  to find  them a s v a l u a b l e s o u r c e s  persons health  h e a l e r s may  a l s o be  jointly direct  their  for  It  students  t h a t the  t h a t nurses  facilitating important  of  As  how  folk  information.  care  as  doctors  were  concepts  nurses  continue  e t h n i c groups,  doctors contribute  explore  necessary  an  manage  of Chinese  to d i f f e r e n t  out  keep  as  o p p o r t u n i t i e s to Collaborating  health care  towards a c h i e v i n g  resource  optimal  clients.  i s apparent  viewpoint  should  that folk  illnesses.  p r o v i s i o n o f h e a l t h c a r e , and  folk  out  have a d e e p u n d e r s t a n d i n g  to  with  nurses  of c l i e n t s  i n n o v a t i v e ways c l i e n t s  should  use  make use  Therefore,  nurses the  are r e s o u r c e f u l i n  f i n d i n g s of t h i s  have a s i g n i f i c a n t  c l i e n t decision-making.  role  decision-making.  support  to play  This study  implications for nursing education l e a r n t o a p p r e c i a t e the  study  as  c o m p l e x i t i e s of  also  In has  nursing health  the  117 Implications As  students are taught  important to  implication  understand  educators exclude as  the c l i e n t s '  the study  made b a s e d  obtaining  illness.  with these  a  T h i s i s because, own  unique  they a l s o  fail  contexts.  begin t o understand  collaborative  need t o examine t h e i r indicated,  to understand  own t h o u g h t  own  problems a r i s e fail  explanatory when  to understand  t h e e x p l a n a t o r y models t h a t  e d u c a t i o n must c h a n g e t o s u p p o r t  that  an o r i e n t a t i o n  practice  underlie professional supports t h i s  begin to c l a r i f y  their  of t h e i r  guide  which  permits  - to  - and t o u n d e r s t a n d practice.  orientation.  The s t u d y  and q u e s t i o n t h e  o b t a i n an i n - d e p t h  e x p l a n a t o r y models.  the  As n u r s i n g s t u d e n t s  own v a l u e s and b e l i e f s ,  ways t h e y t h i n k and b e h a v e , t h e y w i l l understanding  when  the s t r u c t u r e of  i n t h e 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  here  each  behaviour.  (1987) s u g g e s t e d  q u e s t i o n t h e grounds o f t h e i r  both  P r o b l e m s become more complex  p r o c e s s e s and  J.M. A n d e r s o n  that  O n l y by  persons.  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  presented  cannot  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  As t h e s t u d y  ideologies  need  health decisions are  and c u l t u r a l  v i e w p o i n t and b u i l d  students  students  they  Nursing  have t h e i r  perceptions can nurses  o t h e r ' s e x p l a n a t o r y models.  their  i s that  health decision-making  Individuals'  personal, social,  people's  decisions,  nurses  an  on p e r s o n a l m e a n i n g s t h a t a r e c o n s t r u c t e d w i t h i n t h e  relationship  health  study  e x p l a n a t o r y models.  individuals  of i l l n e s s .  individuals'  models.  by t h i s  views of t h e i r  indicates,  Individuals'  As  suggested  the c l i e n t s '  Education  health decision-making,  need t o e m p h a s i z e t h a t  explanations  the  f o r Nursing  118 As  nursing students  m o d e l s , and and  carefully  beliefs,  and  incorporate this (Anderson, As  encounter,  understanding  educators  knowledge  In the  research w i l l  Findings  following  from  Although  s t u d i e s may  understanding section,  interaction,  responses,  have been  models.  of c l i e n t  health  for nursing  Research  guide are  t h e need t o  that  h e a l t h d e c i s i o n s and  familiar  warrants  with  and  i n enhancing  investigation.  client-health  comparing  listening  the  use  skills.  being perceptive to t h e i r  and  The  of art  to  needs  also  promoted.  various concepts  Identified  and  the  explanatory  further  t o study the  utilizing  understand  observing, developing s e n s i t i v i t y  cultivated  In a d d i t i o n ,  promise  nurses  be d e s i g n e d  of p a y i n g a t t e n t i o n ,  need t o be  to  professional  implications  for Nursing  i n t e r v i e w i n g t e c h n i q u e s and  clients'  any  practice  process, gaining access to c l i e n t s '  professional various  the  e x p l a n a t o r y m o d e l s , much  the s t u d y u n d e r s c o r e d  i s a complex s k i l l  Research  on  of  be d i s c u s s e d .  health actions.  models  impinge  into c l i n i c a l  e x p l a n a t o r y models t h a t  validation  understanding  i s required to help  Implications  clients'  values,  a c q u i r e the a b i l i t y  of c l i e n t s '  g a i n a comprehensive  actions.  assumptions,  that  and  explanatory  p l a c e e m p h a s i s on h e a l t h d e c i s i o n -  the e l i c i t i n g  research-based nurses  factors  clients'  1987).  nurse  m a k i n g and  own  a l s o a c h i e v e an  cultural  patient-practitioner  to e n l i s t  examine t h e i r  they w i l l  complex s o c i a l  learn  in this  study.  like  t o be  "not  These c o n c e p t s  the understanding  T h e r e f o r e , t h e y need  " s i c k " and  of c l i e n t s '  further  sick"  hold explanatory  explored  and  119 refined.  As  concepts,  they  define  nurses may  h e a l t h and  search  f o r the  in-depth  g a i n tremendous i n s i g h t illness  and  interpret  meanings of i n t o how  their  these  individuals  illness  experience. Although informants, cultural client  this  study  was  more r e s e a r c h needs t o be  groups t o e x p l o r e  decision-making.  various cultural researchers  identify  with  s t u d i e s are  Type  I diabetes  s t u d i e s done w i t h professionals  how  essential  late  prepare  elderly  of  rational  emphasized a l l a l o n g , test  how  there  they a c t u a l l y  i s a ready  traditional  informants  a younger  and  nurses  I n a d d i t i o n , more  will  and  allow  health  health different  nursing diagnoses to nursing  critical  are  students  Although  a l s o need t o c a r e f u l l y  using  a school  adoption the  of  nursing  to  the  thinking s k i l l s  p r a c t i s e decision-making.  a p p r o a c h and  population  take.  consensus t h a t the  identifies  (Type I I ) were  further appreciate  t o t h i n k e f f e c t i v e l y and  literature  how  practice field.  d e c i s i o n a p p r o a c h e s , such as nurses  diabetes  t h a t have b e e n t a u g h t the  help  ethnic  contrast different  decision-making  them t o e n t e r  development  onset  makes h e a l t h d e c i s i o n s .  other  how  illness.  needed t o e x p l o r e  p a t t e r n s , and  ideas  different  factors influence  from d i f f e r e n t  experience  p e r s p e c t i v e s t h e e l d e r l y may Clinical  cultural  people  t o compare and  decision-making  elderly  conducted with  g r o u p s make h e a l t h d e c i s i o n s w i l l  older a d u l t s with  studied,  how  Chinese  I n a d d i t i o n , s t u d i e s t h a t compare  b a c k g r o u n d s p e r c e i v e and As  conducted with  has  been  examine Although  rational process,  systematically, recent  guide nursing  of thought t h a t c h a l l e n g e s  i t s underlying  and  assumptions.  this  120 Benner  (1983) a c k n o w l e d g e d  critical  care  clinical  situations.  qualitative intuition  nurse  as  essential  develop  qualities  (Rew  and  the  complex  highly  proclaimed  that  throughout  the  Barrow, 1 9 8 7 ) .  decision-making  With  p r o c e s s e s , we  an u n d e r s t a n d i n g  of n u r s e s '  g r a s p " of  researchers using  e s t e e m e d r e s o u r c e employed  more r e s e a r c h on n u r s e s *  subjective  nurse  i n q u i r y have a l s o  phases of the r e s e a r c h p r o c e s s  t o d i s c o v e r and  "intuitive  i n managing  In a d d i t i o n ,  methods o f  i s an  the  of the  thinking  that  may  Intuitive  has  so  come and  l o n g been  neglected. As making  the  findings  have shown, a l t h o u g h h e a l t h d e c i s i o n -  is a  familiar  concept  need t o be nurses may  i n the n u r s i n g a r e n a ,  done t o e x p l o r e how  make d e c i s i o n s ,  clients  as w e l l  as  how  make d e c i s i o n s , both  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 .  r e s e a r c h needs t o p u r s u e health  how  and  nurses  In a d d i t i o n ,  nursing  view of  decision-making.  i s b e c o m i n g an  accumulation health  clients  a nursing versus a medical  In c o n c l u s i o n , w i t h c h a n g i n g making  more s t u d i e s  Important  of advanced  p r o f e s s i o n a l s are  decisions  t o make.  "Megatrends", responsibility e s p e c i a l l y as providers'  knowledge and faced with  that  (1984),  t h e y become d i s i l l u s i o n e d  the  i n technology,  author  of  making t h e i r  elderly  and  meaningful  i n f o r m a n t s e x p e r i e n c e d and perspectives.  decisions,  with h e a l t h care  t o p r o v i d e them w i t h p r o p e r  how  their  With  i n c r e a s i n g l y complex  f o r s e l f - m a n a g e m e n t and  T h i s s t u d y gave r i c h  from  the r i s e  decision-  i n d i v i d u a l s assume i n c r e a s e d  treatment.  diabetes,  area to explore.  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A . , S h r a u g e r , D.G., B e c k e r , R . P . , G a l l a g h e r , T . F . , & W i l t s e , H. ( 1 9 8 6 ) . A randomized study o f t h ee f f e c t s o f a home d i a b e t e s e d u c a t i o n p r o g r a m . D i a b e t e s C a r e , 9_(2), 1 7 3 178.  Rew,  127 L . , & B a r r o w , E.M. ( 1 9 8 7 ) . Intuition: A neglected hallmark o f n u r s i n g knowledge. Advances i nN u r s i n g S c i e n c e , 10 ( 1 ) , 4 9 - 6 2 .  Riehi,  J.,  & Roy, c.  practice  (2nd  ed.).  conceptual, models  (1980).  New Y o r k :  for  nursing  Appleton-Century-Crofts.  R i s t , R.C. ( 1 9 7 9 ) . On t h e m e a n s o f k n o w i n g : Qualitative research i neducation. York U n i v e r s i t y E d u c a t i o n Q u a r t e r l y , 17-21. ^ R o s e n t h a l , M.M. ( 1 9 8 1 ) . P o l i t i c a l process and t h e integration of t r a d i t i o n a l and western medicine i nt h ePeople's Republic of China. S o c i a l S c i e n c e a n d M e d i c i n e , 15A, 599-613. R o t h , H.P. ( 1 9 6 2 ) . P a t i e n t s ' b e l i e f s about p e p t i c u l c e r and i t s t r e a t m e n t . A n n a l s o f I n t e r n a l M e d i c i n e , 5_6_(1), 7 2 - 8 0 . Sandelowski, research. Sims, The  M. ( 1 9 8 6 ) . The p r o b l e m o f r i g o r I n q u a n t i t a t i v e A d v a n c e s i n N u r s i n g S c i e n c e , £.(3), 2 7 - 3 7 .  D. ( 1 9 8 6 ) . Diabetes  Diabetes Educator.  patient education: 12.(2), 1 2 2 - 1 2 5 .  S i m s , D. ( 1 9 8 0 ) . Diabetes; S a i n t L o u i s : C.V. M o s b y .  Reach  statistics  current  Report 209E).  Canada.  (1984a).  A consumer  view.  f o r h e a l t h and freedom.  demographic a n a l y s i s ;  on t h e demographic s i t u a t i o n i nCanada 1983 (91Ottawa: M i n i s t e r o f Supply and S e r v i c e s Canada.  S t a t i s t i c s Canada. (1981). H i g h l i g h t s : 1981Census o f Canada (92-X-535E). Ottawa: Census and Household Statistics Branch. Strauss, A.L. (1975). Introduction. I n A.L. S t r a u s s C h r o n i c i l l n e s s and the q u a l i t y o f l i f e (pp. 1-9). L o u i s : C.V. Mosby. Suchman, E.A. ( 1 9 6 5 ) . S t a g e s o f Journal of Health and S o c i a l  (Ed.), Saint  i l l n e s s and medical care. B e h a v i o r . 6J1), 114-128.  Thorne, s. (1982). intuition: o p e r a t i o n a l i a l n g the concept for nursing practice. Unpublished manuscript, University of B r i t i s h C o l u m b i a , V a n c o u v e r , B.C. Twaddle, A . C . (1979). Sickness behavior C a m b r i d g e , MA: S c h e n k m a n .  and t h es i c k  role.  W a n g , P. ( 1 9 8 3 ) . T r a d i t i o n a l Chinese medicine. I n R.H. Bannerman, J . B e r s t a n , & C . W . C h i e h ( E d s . ) , Traditional medicine and h e a l t h care coverage (pp. 68-75). World H e a l t h Organization. Watson, J . ( 1 9 8 5 ) . N u r s i n g : Human s c i e n c e N o r w a l k , CT: A p p l e t o n - C e n t u r y - C r o f t s .  and human c a r e .  128 Weiss, S.J. (1986). C o n s e n s u a l norms r e g a r d i n g p a t i e n t involvement. S o c i a l S c i e n c e and M e d i c i n e , 2 2 . ( 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 , S t e i n e r , and P.A. Lawrence ( E d s . ) , E d u c a t i n g d i a b e t i c p a t i e n t s (pp. 3 - 1 1 ) . NY: Springer. Young, A. ( 1 9 7 9 ) . The d i m e n s i o n s o f m e d i c a l r a t i o n a l i t y : 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 s t u d y of m e d i c i n e . In Ahmed, & G. C o e l h o ( E d s . ) , Toward a new d e f i n i t i o n of h e a l t h : Psychosocial dimensions (pp.67-85). New Y o r k : Plenum. Yu,  in  G.  A P.  L.C., & Wu, S.C. ( 1 9 8 5 ) . Unemployment and f a m i l y d y n a m i c s i n m e e t i n g the needs o f C h i n e s e e l d e r l y In t h e U n i t e d States. The G e r o n t o l o g i s t , 25_(5), 4 7 2 - 4 7 6 .  APPENDICES  130 Appendix Information  The Dear  and  A  Consent  Form  L i v i n g With Diabetes: P e r s p e c t i v e of the Chinese  Elderly  Sir/Madam,  My name i s M a g d a l e n e L i n g L a i . I am a registered nurse and a student i n the graduate program at the u n i v e r s i t y of B r i t i s h Columbia School of 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 o n C h i n e s e c l i e n t s w i t h diabetes. 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 from c l i e n t s what i t i s l i k e f o r them t o l i v e w i t h an 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 from Chinese persons w i t h d i a b e t e s about t h e i r experiences with their i l l n e s s . I a l s o b e l i e v e I have 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 m a n a g e 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 you so w i s h . A s 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 h a v e requested to r e c r u i t c l i e n t s f o r t h i s study through the 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 has 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 consent form t o you. I f you c o n s e n t t o p a r t i c i p a t e , a t your 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 t w o t o t h r e e o n e h o u r v i s i t s w i t h y o u . I w i l l ask you q u e s t i o n s about your 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 h a v e made s i n c e y o u h a d d i a b e t e s , a n d w a y s y o u m a n a g e y o u r d i a b e t e s a t home. YOU ARE UNDER NO O B L I G A T I O N TO P A R T I C I P A T E I N THIS STUDY, AND ARE F R E E TO WITHDRAW FROM THE STUDY AT ANY TIME. YOUR WITHDRAWAL WILL IN NO WAY AFFECT YOUR TREATMENT AND A C C E S S TO M E D I C A L AND N U R S I N G PROGRAM AND SERVICES. YOU MAY A L S O R E F U S E TO ANSWER ANY QUESTIONS AND/OR STOP THE I N T E R V I E W S WHEN YOU FEEL NECESSARY. AGAIN, THIS W I L L I N NO WAY J E O P A R D I Z E THE MEDICAL AND N U R S I N G TREATMENT OR C A R E YOU RECEIVE. The Interviews will be tape-recorded. If your i n t e r v i e w i s conducted i n Chinese, I will translate the tapes t o E n g l i s h and have them t r a n s c r i b e d . Your 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 . Only myself, and my t h e s i s a d v i s o r s w i l l h a v e a c c e s s t o the taped m a t e r i a l s and t r a n s c r i p t s . Y o u may request to e r a s e any p a r t of the t a p e d m a t e r i a l or t r a n s c r i p t i f you f e e l i t n e c e s s a r y a t any t i m e . I may i n c l u d e e x c e r p t s o f the s t u d y w h e n I w r i t e my r e p o r t , but 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 Appendix Sample  Trigger  Questions  B  f o r Research  Interviews  The f o l l o w i n g q u e s t i o n s were used t o g e n e r a t e ideas and concepts i n the i n i t i a l interviews with clients. Phrasing and terminology of questions varied as the researcher interviewed c l i e n t s . 1.  How d o y o u t h i n k  2.  What  changes  your  diabetes  started?  have you e x p e r i e n c e d  since  you  had  diabetes? 3.  How  has d i a b e t e s  a f f e c t e d your  family  4.  How h a s d i a b e t e s  a f f e c t e d your  relationship  f a m i l y and your  What a r e some t h i n g s  6.  W h a t a r e some t h i n g s y o u a v o i d  7.  your  What  What  your  y o u d o t o manage y o u r i n order  diabetes?  t o take  care  diabetes?  kinds  manage y o u r 8.  with  friends?  5.  of  life?  have  of help  have you sought  to  help  you  diabetes? you been t o l d  a s t o how t o  manage  your  diabetes? 9.  What d i d y o u d o w i t h  10.  Who  11.  How d o y o u f i n d  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  do y o u go t o seek  the information you help  from  the treatment  received?  now?  you a r e r e c e i v i n g ? you?  Appendix nomographic Family  C Sheet  Data  Family Client Roles  Spouse O t h e r s O t h e r s  Others Others  Sex Age Langages Spoken  B.  Patient  Data  1.  P l a c e o£  2.  Time  Birth.  i n Canada.  Education:  Where. Level  of Education.  4.  Religion.  5.  When D i a b e t e s Was  6.  Health Services U t i l i z e d  7.  Living  8.  F a m i l y Income  9.  Occupation  10.  Employment S t a t u s .  11.  C o s t : Amount Spent Diabetes  Diagnosed.  Arrangements  Each  Month t o Manage  Others  

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