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The meaning of diabetes : children's perspectives Leach, Deborah Ann 1986

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THE MEANING OF DIABETES:  CHILDREN'S  PERSPECTIVES  By  DEBORAH ANN LEACH B.S.H.Ec,  A THESIS  University  of  Saskatchewan,  1974  SUBMITTED IN PARTIAL FULFILLMENT OF  THE REQUIREMENT FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Department  We a c c e p t to  of  this  the  Mathematics and S c i e n c e  thesis  required  THE UNIVERSITY  as  conforming  standard  OF BRITISH COLUMBIA  September,  1986  © Deborah Ann L e a c h ,  1986  Education)  In p r e s e n t i n g  t h i s t h e s i s i n p a r t i a l f u l f i l m e n t of  requirements f o r an advanced degree a t the  the  University  o f B r i t i s h Columbia, I agree t h a t the L i b r a r y s h a l l make it  f r e e l y a v a i l a b l e f o r reference  and  study.  I  further  agree t h a t p e r m i s s i o n f o r e x t e n s i v e copying of t h i s t h e s i s f o r s c h o l a r l y purposes may department or by h i s or her  be granted by the head o f representatives.  my  It is  understood t h a t copying or p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l gain  s h a l l not be  allowed without my  permission.  Department o f The U n i v e r s i t y o f B r i t i s h Columbia 1 9 5 6 Main Mall Vancouver, Canada V6T  1Y3  written  ii  ABSTRACT  This children's aged  to  8  exploratory beliefs  participated make  their  later  in  method.  children  explain  The  study  certain  were  beliefs  clinical  how  children  at  the  diabetes  that  abstract  or  indicating to  the  understand  personal need  to  more  constraints  to  feelings having  data  was  have  a  model  them The  about  before  diabetes.  perspective, diabetes.  importance  of of  introducing that  poorly  explication research  being  how  understanding  the  were  Piaget's  about  periodically  previous  to  children  f o c u s s e d on  good  were  they  designed  of  principles  children  diabetic Children  Twelve  knowledge  and  ideas.  confirmed  their  attached  with  question  complex  explicit.  illustrated  Concepts  to  perspectives consider  and  activities  phenomenological  children  discussed need  a  explanatory  explanations.  camp w h e r e  modification  medical  concepts  summer  these  from  interpret  clinical  not  of  a  uncovering mellitus.  playing  using  at  diabetes  at  diabetes  home  child's  aimed  about  role  Analysis  biomedical  was  observed  about  indicated  eliciting  ideas  various  interviewed  and  and  years  12  study  were assimilated,  and of  help  them  children's  indicating  different  and  the  the  iii  T A B L E OF CONTENTS  Abstract  •  i i  List  of Tables  vi  List  of Figures  vii  Acknowledgements  viii  CHAPTER ONE I. II.  STATEMENT OF THE PROBLEM  Introduction  1  The Research Focus  7  The Problem III. IV. V.  8  Methods of the Study  9  Scope and L i m i t a t i o n s of the Study  10  Educational  11  S i g n i f i c a n c e of the Study  CHAPTER TWO  A REVIEW OF THE LITERATURE  I.  Introduction  II.  Clinical  Construction  12 of Diabetes  12  Biomedical Approach to C l i n i c a l  III. IV. V.  P r a c t i c e . . 15  Hermeneutic Model of C l i n i c a l  P r a c t i c e ... 19  P s y c h o l o g i c a l Context of the Study  27  C h i l d r e n ' s Understanding of I l l n e s s  31  C h i l d r e n and Diabetes  32  iv  CHAPTER I. II.  THREE  METHODS OF THE STUDY  Introduction  3 9  Research  3 9  Design  Characteristics III.  Rationale  4 0  o f t h e Sample  4 1  f o r Techniques  IV.  Data  Collection  Procedures  4 2  V.  Data  Processing  and A n a l y s i s  4 5  CHAPTER I.  FOUR  F I N D I N G S OF THE STUDY 4 9  Introduction  II.  Analyses  of Individual  III.  Patterns  o f Responses  Children's from  4 9  Concepts  Children with  Diabetes:  Etiology Course o f I l l n e s s / S e v e r i t y / T y p e o f S i c k Role.... Effect of Having Diabetes: Pathophysiology O n s e t o f Symptoms Treatment . IV.  Comparison Between  the Child/Biomedical  CHAPTER F I V E  Models  A SUMMARY OF MAJOR  5 4 5 5 6 0 6 4 69 .7 6  FINDINGS  Introduction  8 4  II.  Objectives  8 4  III.  Conclusions  IV.  Educational  I.  V.  o f the Study  8 5 8 6  Implications  Recommendations f o r F u r t h e r  Research  9 0  V  BIBLIOGRAPHY  92  APPENDIX  ONE:  Gowin's  Knowledge  APPENDIX  TWO:  Letter  APPENDIX  THREE:  Camp Q u e s t i o n s / R o l e  APPENDIX  FOUR:  Development  APPENDIX  FIVE:  Interview  APPENDIX  SIX:  Biomedical  APPENDIX  SEVEN:  Exemplary  APPENDIX  EIGHT:  Children's  of  Vee  100  Parental/Guardian  of  Play  Interview  Consent  . . . .  Scenarios  102  Format  104  . . . . . . . .  Format Model  101  107 of  Transcript Drawings  Diabetes from of  an I n t e r v i e w  Diabetes  109 .  120 129  vi  LIST  Table  I  Examples of the C h i l d ' s  OF  TABLES  Children's Beliefs Interpreted P e r s p e c t i v e and the B i o m e d i c a l  from Model  vii  LIST  Fig.  Fig.  Fig.  1.  2.  3.  Communication i n Between Models  OF F I G U R E S  Diabetes:  Tranaction 9  C o m p a r i s o n o f the b i o m e d i c a l and c u l t u r a l hermeneutic models of c l i n i c a l p r a c t i c e Inferring  Conceptual  Interview  Vee  Fig.  4.  Todd's  Fig.  5.  Cathy's  Interview Interview  Structure  on  14  the 47  Vee Vee  48 50  viii  ACKNOWLEDGEMENTS  This  study  enthusiastic as  participation  have of  been  the  possible  children  discussions  with  the  clinicians  at  The  Columbia  Children's  Hospital  and  relevant.  I  British  began  to  feel  Canadian  endorsing Morrison  the for  this  Diabetes  Camp K a k h a m e l a .  thesis  was  c o a c h i n g me  and in  to the  their  the families  F r o m my o b s e r v a t i o n s children's  Association in  research,  without  and  of  the  the  not  staff  I  well  would  Gaalen  British  diabetic Lion's  am  also  Columbia  E r i c k s o n and  endeavour.  and  clinics  Gate  Hospital  grateful  to  for  Nancy  at  Waxier  1 CHAPTER  ONE  S T A T E M E N T OF THE  I. The  INTRODUCTION  purpose o f t h i s  i n f o r m a t i o n to the study  PIOBLEM  chapter  i s to provide  and h i g h l i g h t  the l i t e r a t u r e  to the general problem area of understanding about  background relevant  children's beliefs  diabetes.  Background to the Study Literature concepts and  related  t o c h i l d r e n ' s b e l i e f s about  indicates that children  have t h e i r  i n t e r p r e t a t i o n s w h i c h must be c o n s i d e r e d  context  ( D r i v e r and E a s l e y , 1 9 7 8 ) .  appreciation of c h i l d r e n ' s b e l i e f s health  Insulin  An u n d e r s t a n d i n g i s especially  and  relevant for  dependent d i a b e t e s m e l l i t u s which o c c u r s  i n childhood i s primarily replacement  and  treatment  The  extreme changes i n blood  therapy  does n o t r e p r o d u c e  presented  and e a t i n g .  i n Appendix S i x ) .  i s not a cure  f o r diabetes  normal m e t a b o l i c f u n c t i o n i n g .  glucose  l e v e l s o f endogenous i n s u l i n ,  growth, a c t i v i t y  most  due t o i n s u l i n d e f i c i e n c y .  children with diabetes are related  is  i n an e d u c a t i o n a l  as d i a b e t e s .  However, i n s u l i n  low  understanding  p r o f e s s i o n a l s d e a l i n g w i t h c h i l d r e n who have a c h r o n i c  c o n d i t i o n such  often  own  scientific  l e v e l s experienced  t o many f a c t o r s ,  by  including  unpredictable patterns of  (The b i o m e d i c a l model o f d i a b e t e s  2 Diabetes  i s a c o m p l e x d i s o r d e r and  s u c h c o m p r e h e n s i v e and ( J o h n s o n and  r e g i m e n s and The  diabetes  h y p o g l y c e m i a , the  The  not  i m p o s e d on  l i v e s with  c o n s t r a i n t s of  demand  client  o n s e t i s sudden and  c h i l d r e n to f o l l o w r i g o r o u s  restrictions  child with  illnesses  t e c h n i c a l c o m p e t e n c e f r o m the  Rosenbloom, 1982).  p r o f e s s i o n a l s expect  few  the  their  insulin  treatment  healthy  constant  health  peers.  possibility  injections,  the  n e c e s s i t y of frequent  s e l f - t e s t i n g of blood  glucose,  restrictions;  prospect  complications.  a child  and  the  r e a c t s to d i a b e t e s  of long-term  i s largely  d e t e r m i n e d by  of other  f a m i l y members ( J e f f e r s o n e t a l 1 9 8 5 ) .  diabetes  experience  interpersonal  problems with  children,  w h i c h may  (Johnson,  1980).  Health  various  be  psychosocial their  p r o f e s s i o n a l s and  children with diabetes  grow and  practitioners  need t o l e a r n ways t o p r o v i d e  educators their  support  as a d j u n c t s  aware o f the v a l u e s ,  p r a c t i c e can  (Arky,  other by  diabetes  b e l i e f s and  1982)  that  achieve w h i c h means  care.  education Diabetes  needs w h i c h i n f l u e n c e e s t a b l i s h more g e n u i n e  and  effective  The  h e a l t h p r o f e s s i o n a l ' s a p p r o a c h t o the c l i e n t - p r o v i d e r  r e l a t i o n s h i p leads of d i a b e t e s : clients  and  to important  i n f l u e n c i n g her  their  and  effective  t o good m e d i c a l  grow p r o f e s s i o n a l l y and  partnerships with  with  mature n o r m a l l y ,  well-being  clients  (Anderson,  i m p l i c a t i o n s f o r the  behaviour,  s e n s e o f s a t i s f a c t i o n or  How  response  f a m i l i e s want t o e n s u r e  and  social  the  diet  Children with  exacerbated  psychological  and  emotional  and  problems, i n c l u d i n g  f a m i l y and  b r o u g h t on o r  of  her  1985).  management  r e l a t i o n s h i p with  f r u s t r a t i o n with  her  3  educational role  (Anderson,  A basic d i f f i c u l t y diabetes the  education.  traditional  practitioners, the  experts  1 9 8 5 ) .  exists  medical  t r a i n e d to focus  their  situations,  health-care  entire diabetes  This t r a d i t i o n a l  a p p r o a c h may  p r o b l e m s , but  not  client  Hollender,  technology  alone  chronically  children with diabetes emotional  factors.  and  By c a u s e d by into  the  Anderson, to achieve  ill  their  Childhood  child.  the  diabetes  definition,  failure  o f the  juvenile-onset  acute  diabetes,  r e s t s with  the  Medical  1 9 8 5 ) .  optimal  medical  Equally important  biomedical  example of  aspects  to and an  are  1 9 8 4 ) .  diabetes  insulin-dependent  i s a complex d i s o r d e r  of d i a b e t e s  diabetes  d i a b e t e s , or  during childhood,  insulin  mellitus.  (IDDM), ketosis-prone  d i a b e t e s , i s t h e most s e r i o u s f o r m o f the d i s e a s e . d i a b e t e s most o f t e n d e v e l o p s  1 9 8 1 ) .  p a n c r e a s t o r e l e a s e enough  diabetes, b r i t t l e  a  for certain  i s a key  body. T h e r e a r e f o u r m a i n t y p e s  Type I , a l s o c a l l e d  as  f a m i l i e s are environmental  intertwined (Williamson,  biomedical  become a c c e p t e d  f o r treatment  1 9 5 6 ;  i l l n e s s where p s y c h o l o g i c a l and inextricably  I n many  satisfactory  is insufficient  management o f the  compliance  c h r o n i c c o n d i t i o n s , s u c h as  responsibility  and  team.  as  education  syndrome ( K i v e l o w i t z ,  be  where much o f the (Szasz  and  on  care  Diabetes  glucose  c o n t r o l or management has  synonym f o r the  based  a t t e n t i o n on d i s e a s e ,  responsible for health care. blood  of  is still  approach which views h e a l t h  p r e s c r i p t i o n s o f the  medical  current focus  Much o f modern t r e a t m e n t  programs emphasize controlling to the  i n the  Type I  although  young  4  a d u l t s a l s o can d e v e l o p t h i s f o r m . c e r t a i n HLA t y p e s present.  and i s l e t  The o t h e r  cell  diabetes  disorders.  The g o a l o f t r e a t m e n t  kidneys, Regular  and d i a b e t e s  and i n s u l i n .  i s to maintain  t r e a t i n g r e a c t i o n s and prompt t r e a t m e n t  al,  to lead healthy,  balance  can be  health very  care  prevented.  r e c o g n i z i n g and  of i n f e c t i o n s allow normal l i v e s  the medical  (Glanze  care  solution,  For a c h i l d ,  concern than h i g h  diabetes  may  blood  glucose  reaction  readings  i n the l o n g term) .  (which  r e g i m e n as a  What may have been  one ( S i m s ,  need f o r h e a l t h  perspectives  diabetes  management  These e x a m p l e s  rather  illustrate  p r o f e s s i o n a l s and f a m i l i e s t o s h a r e  and s e t m u t u a l l y  To f a c i l i t a t e  1979).  having  labelled  n o n c o m p l i a n c e can be v i e w e d a s a c o m m u n i c a t i o n p r o b l e m than a b e h a v i o u r a l  may  W h i l e many  may s e e i t a s p a r t o f t h e p r o b l e m o f  (Anderson, 1985).  have  regard to  a v o i d i n g an i n s u l i n  p r a c t i t i o n e r s see the t r e a t m e n t  clients  diabetes  and p r i o r i t i e s w i t h  to d i a b e t i c complications  health  and  et  approach i s t h a t the  and t h e p e r s o n w i t h  perceptions  management.  a greater  lead  practitioner  different  diabetes  the  eyes,  1985). A major problem w i t h  is  a  endocrine  The e f f e c t s a r e s e v e r e - - t h e  e x e r c i s e , f o l l o w i n g the proper d i e t ,  diabetes  diabetes,  secondary to other  n e r v o u s s y s t e m may be a f f e c t e d — b u t  people with  with  antibodies are frequently  f o r m s a r e : non i n s u l i n - d e p e n d e n t  gestational  between g l u c o s e  IDDM i s a s s o c i a t e d  acceptable  goals.  t h e marked c h a n g e s i n l i f e s t y l e r e g i m e s , a t t e n t i o n must f o c u s  the f a m i l y , a l t e r i n g the nature  demanded by  on t h e c l i e n t  of the p a t i e n t - p r a c t i t i o n e r  5  r e l a t i o n s h i p i n a very educational  a p p r o a c h , drawn f r o m  s u g g e s t e d as  a r e l e v a n t and  approach (Anderson, to f r e e c l i e n t s personal  1985).  to d e f i n e  responsibility  u n d e r s t a n d and To  be  educational purely  The and  and  able  meet t h e i r  requires  to blend  requires purely  the  i m p o r t a n c e o f the  significant  educational  because only  the  the  input  and  the  proportions  nature  health and  f o r each client  of d i a b e t e s point  client. does  satisfy  of view  and  able  most  and  complete  care  p r o f e s s i o n a l s p r i m a r i l y as  consultants.  be  d i f f e r e n c e s i n e a c h a p p r o a c h and  k n o w l e d g e a b l e a b o u t the  flexible  and  p r a g m a t i c enough t o c r e a t e  for  each f a m i l y .  and  listens  An  to c l i e n t s  t o d e t e r m i n e how (Anderson,  I t i s the w o r k i n g h y p o t h e s i s  diabetes  and  should  p r a c t i t i o n e r must  a compatible  1985). of t h i s t h e s i s t h a t  basis for diabetes  r e c o n c e p t u a l i z a t i o n o f the  observes  much d i r e c t i o n v e r s u s  a p p r e c i a t i o n of c h i l d r e n ' s ideas  f o r m the  be  combination  e f f e c t i v e c l i e n t - c e n t e r e d educator  autonomy e a c h r e q u i r e s  understanding  The  The  clients  to accept  employ h e a l t h  not  self-care  involvement of f a m i l i e s .  a p p r o a c h does n o t  for their health  encourages  reference.  traditional  client's  aims  p r a c t i t i o n e r to  educator  a m i n o r i t y a r e w i l l i n g and  responsibility  needs,  approach i n v o l v i n g a passive  work f o r most f a m i l i e s b e c a u s e the increases  own  been  medical  approach which  c l i e n t ' s frame of  approaches, i n v a r y i n g medical  An  a l t e r n a t i v e to the  educational  e f f e c t i v e diabetes  must be  (Cohen, 1 9 7 9 ) .  c o u n s e l l i n g p s y c h o l o g y , has  valuable  work t h r o u g h the  an  professional  The  f u n d a m e n t a l way  about  education.  r e l a t i o n s h i p between t h e  an  A  biochemical  6  process  and  the  to f a c i l i t a t e Engel  clinical  attempt  begin with  meaning s t r u c t u r e . diabetes,  of diabetes i s r e q u i r e d i n order  client-clinician  a r g u e d t h a t any  model s h o u l d  data  communication (Engel, to develop  1977).  an a l t e r n a t e m e d i c a l  the a p p r o p r i a t e a n a l y s i s o f i l l n e s s  In order  i t i s necessary  to understand  the  as  c h i l d ' s model  a  of  t o i n t e r p r e t what d i a b e t e s means t o  children. While technical  s i g n i f i c a n t work has  aspects  been done r e g a r d i n g  o f d i a b e t e s management, the  p e r s p e c t i v e a b o u t d i a b e t e s r e m a i n s an a r e a purpose of t h i s  s t u d y was  d i a b e t e s as a c h i l d . philosophy  concepts.  own  T h i s i n v e s t i g a t i o n was  sense'  o f the w o r l d  studied.  grounded i n the  (intuitive,  someone e l s e ' s i n t e r p r e t a t i o n o f the w o r l d  concept  (Ausubel, new  1968).  (West and  case  concepts  beliefs,  the h e a l t h p r a c t i t i o n e r  new  Since meaningful  the l e a r n e r a l r e a d y h a s , should  Pines, new material  learning  concepts,  to  i . e . personal  take  i n t o account  p e r s p e c t i v e s when a c a r e p l a n i s b e i n g d e v e l o p e d . f o r h e a l t h p r o f e s s i o n a l s and  naive  o f the more  knowledge, i . e . b i o m e d i c a l  relevant  important  or  of  knowledge, i . e .  f o r w h i c h the  i s an e x t e n s i o n , e l a b o r a t i o n or s p e c i a l  requires linking  gut  l e a r n i n g i n v o l v e s l i n k i n g of  i n f o r m a t i o n t o an e x i s t i n g  concept  diabetic,  integration  i n s t r u c t i o n or d i s c i p l i n e  Most m e a n i n g f u l  The  by ' c o n s t r u c t i n g '  l e a r n i n g i s the  the e n v i r o n m e n t  knowledge) w i t h formal  inclusive  t o be  t o make e x p l i c i t what i s means t o have  Such c o n c e p t u a l  interactions with  (1985).  child's  t h a t c h i l d r e n l e a r n what i t means t o be  •making t h e i r  the  educators  both  It i s to l e a r n  how  7 children  come  to  understand  prevention  and  form the  basis  educating  c h i l d r e n about  their  framework  for  Improved e x p l a n a t i o n s  children;  perhaps  developing  illness medical  helping  regimens  is  2.  Gaps e x i s t  for  increased  care 4.  team  to  facilitate 5.  his  6.  child's  frame  of  compliance  several  the  management  in  reasons: childhood.  r e g a r d i n g when and what  a chronic i l l n e s s  prior  of  client  ( A l l e n et  al,  1984).  chronic i l l n e s s as  part  of  the  c h i l d r e n who a r e i l l  conceptions  understand  the  c h i l d might  is health  it  is  have  to  1980).  children's  cognitive  p a r t i c i p a t i o n in health  frightening,  seem to  r e g a r d to  and l i t t l e  with  but may s e r v e  care as  processes  an a r e a  for  sophistication  and  1981).  today  awareness w i t h 1981)  less  (Steward,  for  1981).  undertaken for  d e a l i n g with  children's  only  Children  u n d e r s t a n d i n g and  ( G r a t z and P i l i a v i n ,  better  capabilities, becomes not  care  diabetes  1980).  consider  As a d u l t s  learning  was  p a r t i c i p a t i o n by the  (Etzwiler,  for  provide a  more e f f e c t i v e l y  current l i t e r a t u r e  trend i n  In p r o f e s s i o n a l l y  important  cope  of  the  THE RESEARCH FOCUS  c h i l d r e n who have  The c u r r e n t  and s h o u l d  a c h r o n i c c o n d i t i o n which occurs i n the  3.  should  ( P e r r i n and G e r r i t y ,  investigation  Diabetes  tell  to  and i m p r o v i n g t h e i r  1.  to  health  them  II. This  knowledge  the  of  with  This  origins,  treatment  their  diabetes.  the  research  display  their has  reference.  a greater  environment been  ( G r a t z and  Piliavin,  r e p o r t e d on d i a b e t e s  from  the  8  The P r o b l e m The p u r p o s e  of  meaning d i a b e t e s  holds  'naive  theories  or  answer  the  1  this for  study  to  make e x p l i c i t  c h i l d r e n and to  perspectives  of  describe  diabetes.  the  their  Specifically  to  questions:  How do c h i l d r e n e x p l a i n  (1)  was  diabetes  from  a  phenomenological  perspective? (2)  How do c h i l d r e n i n t e r p r e t  (3)  Are t h e r e It  primary  was  focus  explicit  to  of  this  of  the  it  that  better  both  position  Relationships model  the  are  child's to  illustrated  ideas  of  model  of  variables  in Figure  1.  i n the  by making  model  diabetes. model o f  who s h o u l d  model,  an e f f e c t i v e  the  Clinical  children's  and the  diabetes,  biomedical  professional,  diabetes?  diabetes?  model o f  diabetes. i n the  about  about  be i d e n t i f i e d  perspective  aspects  develop  among the  of  implicit  a health  knowledge  a child's  could  medical  various  seems l i k e l y  that  perceptions  diabetes  represent  children's  study,  making e x p l i c i t  account  in  hypothesized  children's  explanations used  patterns  medical  were  By diabetes take  into  would be i n a much  diabetes proposed  care  plan.  communication  9 Child's Beliefs About Diabetes  Child's > Model o f Diabetes  \ \ \ \  Shared > M e a n i n g About Diabetes  >  /  Negotiated > Diabetes Care Plan  /  Clinical Explanations of D i a b e t e s  Biomedical/ > Model o f Diabetes (Note:  Figure  1 Communication i n D i a b e t e s :  arrows i n d i c a t e  direction)  T r a n s a c t i o n Between M o d e l s ( A d a p t e d from L i p o w s k i ,  III. A combination of diabetes  means  attending  to  unstructured  techniques  diabetes.  Conversations,  children's  beliefs  c h i l d r e n was ideas  and the  clinical  well  role  interviewed  as  of  the  structure  of of  field  kept  notes  were  used  to  plays  the  aged  i n the  of  role  field plays  Through v e r b a l  and tape beliefs  12 An  in into  of  probe  twelve their  concepts.  form  from  study.  and d i s c u s s i o n s ,  and f u r t h e r  diabetes  8 to  c h i l d r e n with  provided insight  confirm  what  examine  to  audiotapes  children's  conceptualizations  Children  F o l l o w i n g camp,  c h i l d r e n ' s drawings.  analysis  explore  diabetes.  and u n d e r s t a n d i n g o f  transcripts  to  dynamics a f f e c t i n g  observations,  about  R e c o r d s were  used  diabetes.  ' e t h n o g r a p h i c a p p r o a c h ' was  beliefs  to  were  summer camp p a r t i c i p a t e d i n the  children's  addition  METHODS OF STUDY  c h i l d r e n with  a diabetes  1973)  e x p l o r e d from  derived. their  and i n t e r v i e w s , and  transcripts, were  n o t e s and  content  models  of  the  Children's  descriptions  of  as  memories, f e e l i n g s , diabetes. assessed  beliefs,  i s s u e s and p r o b l e m s r e l a t e d t o  Children's understanding i n terms o f t h e i r  of diabetes  congruence w i t h  c o n c e p t s was  the b i o m e d i c a l  model.  IV. This  SCOPE AND LIMITATIONS OF THE STUDY  study  describes  sample o f c h i l d r e n w i t h  the p e r s p e c t i v e s o f a convenience  diabetes.  Children's ideas,  questions  and  a c t i o n s n o t e d d u r i n g t h e camp s e s s i o n s f o r m e d t h e b a s i s f o r  the  interview protocol.  the  biomedical  The c l i n i c a l  m o d e l , were t a k e n  explanations  from c u r r e n t  representing  diabetes  education  literature. The amount o f t i m e t h e r e s e a r c h e r a t camp was l i m i t e d ; minutes.  Input  interviews with  study  diabetes predict involves  the c h i l d r e n  i n d i v i d u a l s a v e r a g e d 30  and i n v o l v e m e n t o f f a m i l i e s was n o t p l a n n e d ,  because o f the s t u d y ' s the  spent w i t h  focus  on t h e c h i l d ' s p e r s p e c t i v e .  a d d r e s s e d t h e c o g n i t i v e and a f f e c t i v e  While  elements of  education,  t h e r e was no a t t e m p t made t o a n a l y z e and  behaviours.  'Compliance' to a c l i n i c a l p r e s c r i p t i o n  d e c i s i o n a n a l y s i s and t h e o r i e s , as w e l l as p a t i e n t  preferences  and h e a l t h b e l i e f s  beyond t h e s c o p e o f t h i s  study.  (Eraker  e t a l , 1984) w h i c h go  11 VI. The and  how  EDUCATIONAL SIGNIFICANCE OF  study points  out  THE  STUDY  children's perspective  c h i l d r e n l e a r n about t h e i r  chronic  of d i a b e t e s ,  professionals  can  the  diabetes.  i n t e r p r e t i n g between t h e  By  c h i l d ' s model, h e a l t h the  w o r k e r s can  care  By health has  model and  plans  i n t e r v e n t i o n s should  be  tried.  outlined issues  for consideration  plan.  With  c h i l d ' s model o f d i a b e t e s  point,  educational  the  i n the  i n t e r v e n t i o n s can  l e a r n i n g needs o f c h i l d r e n .  be  The  the  t o meet  l e a r n i n g needs o f c h i l d r e n t h u s i d e n t i f y i n g when and  educational  the  c h i l d who  biomedical  develop  diabetes,  condition.  exploring children's conceptualizations b e t t e r empathize with  of  what  analysis  development of a u s e d as  the  care  starting  made more a p p r o p r i a t e  to  12 CHAPTER  R E V I E W OF THE  I. This  chapter  understanding  TWO  LITERATURE  INTRODUCTION  reviews the l i t e r a t u r e r e l a t e d  of diabetes,  encompassing:  1.  C l i n i c a l construction of diabetes  2.  Psychological context  3.  Children's  4.  C h i l d r e n and  with  of health  and i l l n e s s  diabetes  C L I N I C A L CONSTRUCTION OF DIABETES  Today, h e a l t h mainly  o f the study  understanding  II.  chronic  care  systems i n the Western world  conditions.  f u t u r e i n the f i e l d  of health  The m a j o r c h a l l e n g e  care  system  t r e a t m e n t p r o t o c o l s and programmes i n c l u d i n g communication support,  of h e a l t h sectors  system w i t h and h e a l t h  (Kleinman,  realities  o f the  with  education,  e v a l u a t i o n and r e w a r d components  1983).  Anthropological a cultural  deal  i s t h e d e v e l o p m e n t and  implementation of a comprehensive d e l i v e r y  (Etzwiler,  to children's  research three  care:  supports  distinctive the popular,  a v i e w o f m e d i c i n e as and o v e r l a p p i n g folk  arenas  and p r o f e s s i o n a l  1980; C h r i s m a n and K l e i n m a n ,  1983).  Illness  a r e g r o u n d e d i n c o n c e p t u a l i z a t i o n s o f d i s t i n c t and  complex m e d i c a l anthropology  subcultures.  A key axiom i n m e d i c a l  i s t h e d i c h o t o m y between t h e p a t i e n t ' s v i e w  13 o f s i c k n e s s as i l l n e s s and  the  biomedical  d i s e a s e ( E i s e n b e r g , 1977;  Kleinman,  ( 1 9 8 1 ) have compared t h e  biomedical  models of p r a c t i c e Kleinman any  (1)  psychosocial guide  and  through  ( 1 9 8 0 ) has  identified  the  cultural  cultural  five  experience;  (2) t h e e s t a b l i s h m e n t  (4)  s e c t o r has Craig,  o f the  of c r i t e r i a to treatment  illness  as l a b e l l i n g  episodes  and  (5)  of  t h e management o f  outcomes. biomedical  model r e p r e s e n t i n g t h e p r o f e s s i o n a l  been w e l l d e f i n e d  1982;  less well  a  h e a l i n g a c t i v i t i e s , i n c l u d i n g a l l types  t h e r a p e u t i c i n t e r v e n t i o n s ; and therapeutic  dichotomy.  professional.  evaluate  (3) t h e management o f p a r t i c u l a r  explaining;  hermeneutic  core f u n c t i o n s i n  f o l k or  and  as  Good  c o n s t r u c t i o n o f i l l n e s s as  communicative o p e r a t i o n s such  The  Good and  ( s e e F i g u r e 2) t o i l l u s t r a t e t h i s  the h e a l t h c a r e s e e k i n g p r o c e s s  approaches;  two  1980).  h e a l t h care system, whether p o p u l a r ,  These a r e :  view of s i c k n e s s  L e b o v i t z , 1984).  documented. clinical  The  ( s e e , f o r example E t z w i l e r , The  popular  purpose of t h i s  view of d i a b e t e s i s study  was  f u n c t i o n s i n the h e a l t h care of  w i t h d i a b e t e s — c o n s t r u c t i o n o f the i l l n e s s e x p e r i e n c e c o m m u n i c a t i o n s between c l i e n t and  1962a;  clinician.  to  explore  children and  14  C h a r a c t e r i s t i c s o f the biomedical (empiricist) c l i n i c a l model  Pathological  entity:  S o m a t i c or psychophysiological l e s i o n or d y s f u n c t i o n Structure  of  Interpretive  Interpretive  Understanding  (Verstehen)  strategy:  D i a l e c t i c a l l y explore r e l a t i o n s h i p between symptoms and s o m a t i c disorder Therapeutic  Evaluate explanatory m o d e l s , decode semantic ne twork  goal:  D i a g n o s i s and explanation (Erklaren)  D i a l e c t i c a l l y explore r e l a t i o n s h i p between symptoms ( t e x t ) and s e m a n t i c network ( c o n t e x t )  goal  Intervene i n somatic disease process  2.  Relevant data r e v e a l meaning o f illness  procedures:  Review o f s y s t e m s , laboratory tests  Fig-ore  Meaningful c o n s t r u c t , i l l n e s s r e a l i t y o f the sufferer  relevance:  Relevant data r e v e a l somatic d i s o r d e r Elicitation  C h a r a c t e r i s t i c s o f the cultural (hermeneutic) c l i n i c a l model  To t r e a t patient's e x p e r i e n c e : to b r i n g t o understanding hidden aspects of illness r e a l i t y and t r a n s f o r m that r e a l i t y  Comparison of the b i o m e d i c a l models of c l i n i c a l p r a c t i c e . (Adapted  and  cultural  from Good  hermeneutic  & Good,  1981)  15 THE BIOMEDICAL APPROACH TO CLINICAL PRACTICE C o n s t r u c t i o n of the I l l n e s s  Experience  Western a l l o p a t h i c medicine  h a s been d o m i n a t e d by a  p h i l o s o p h y , t r a c e a b l e to D e s c a r t e s , which i n t o mind and body. a chronic endocrine genetic,  split  The b i o m e d i c a l a p p r o a c h  t h e human  views  d i s o r d e r o f unknown e t i o l o g y  environmental  and i m m u n o l o g i c a l  c o m p l e x management on a d a i l y  basis.  made an enormous i m p a c t delivery  system The  on m e d i c a l  d i a b e t e s as  attributed to  factors;  requiring  Use o f t h i s  m o d e l h a s l e d t o a d v a n c e s i n s c i e n c e and m e d i c i n e  empiricist which  c u r r e n t t r e n d i n t h e management o f c h r o n i c  the  a s p a r t o f t h e h e a l t h c a r e team ( E t z w i l e r ,  as d i a b e t e s , i s f o r i n c r e a s e d p a r t i c i p a t i o n by  and t h e i r  families  management a s s i s t e d home b l o o d g l u c o s e insulin and  play s i g n i f i c a n t  roles i n diabetes  by r e c e n t a d v a n c e s i n i n s u l i n monitoring.  Multiple  r e t u r n blood glucose  of blood glucose  daily  d e l i v e r y and  i n j e c t i o n s o r an  l e v e l s t o normal.  On-the-spot  and u r i n a r y k e t o n e  levels  Records  ( i n c h a r t form or  notebook w i t h g r a p h i c microcomputer d i s p l a y ) enable  and p r a c t i t i o n e r  glycemic  readings  regarding  t h e e f f e c t i v e n e s s o f b l o o d g l u c o s e management e f f o r t s . of blood glucose  cells  and p e r i o d i c g l y c o s y l a t e d h a e m o g l o b i n  measurements (from the l a b o r a t o r y ) p r o v i d e feedback  client  1980).  pump a r e u s e d t o m i m i c t h e s e c r e t i o n o f n o r m a l B  electronic  care  (Ng, 1981).  such  Clients  have  r e s e a r c h and t h e h e a l t h  illnesses, client  being  control.  to analyze  t r e n d s and p l a n f o r i m p r o v e d  16 B i o m e d i c i n e * s u n d e r s t a n d i n g o f d i a b e t e s has t h e p a s t few with  decades,  c o n s i s t i n g of c l i n i c a l  the t h e o r i e s p r e v a i l i n g a t a c e r t a i n  D i a b e t e s management has traditional  magic.  t h e d i a g n o s i s and unethical These  not  been b u i l t  time  (Kleinman,  on t h e p r a c t i c e s  beliefs regarding  o f t h e c o n d i t i o n and  assume i t i s  b e l i e f s u n d e r l i n e s the symbolic importance f o r p r a c t i t i o n e r s and  can  'controlled'  be  practitioners'  patients.  The  belief  are a r b i t r a r i l y  blood glucose i s s o c i a l l y  defined.  sustain  d e r i v e d and  T h e r e has  justification  frequently  d i s a g r e e d the v a l u e of i n t e r v e n t i o n s  n o r m a l i t y of  f o r a c t i o n s t a k e n and  (Posner,  control.  The  s e l e c t i o n o f the b l o o d g l u c o s e l e v e l  index of c o n t r o l  causes  I n d i a b e t e s , even p e r f e c t c o m p l i a n c e c o n t r o l of the problem as k i d n e y  Of c h i l d r e n  diagnosed  15, a p p r o x i m a t e l y 50%  ( B e c k e r and  failure,  o t h e r v a s c u l a r c h a n g e s b e g i n 10  5 and  range  d e l a y or l e s s e n c o m p l i c a t i o n s ( J o h n s o n ,  C o m p l i c a t i o n s such  tight  as t h e o n l y  p r o b l e m s s i n c e t h e r e i s no e v i d e n c e  m a i n t a i n i n g b l o o d g l u c o s e w i t h i n a normal  diabetes.  1977).  ( 1 9 8 3 ) has q u e s t i o n e d w h e t h e r or not i t i s  t o assume t h a t c u r r e n t t h e r a p i e s can a c h i e v e  ' c u r e ' but  little  d o c t o r s have  realistic  1983).  Factors  o f t e n been  scientific  will  'control'  that diabetes  r e g a r d i n g an u n c e r t a i n c o n d i t i o n .  i n f l u e n c i n g diagnoses  Ainslie  rigidly.  of the  i s an i m p o r t a n t mechanism t o  faith  1980).  of  to c o n t r o l d i a b e t e s ( i . e . blood glucose)  ritual  over  data i n keeping  P r a c t i t i o n e r s hold certain treatment  changed  t o 20  (tight  1982;  that  control)  Ainslie,  does n o t r e s u l t i n Janz,  1985).  r e t i n o p a t h y , neuropathy years a f t e r  as d i a b e t i c  die of renal  the onset  and  of  between t h e ages o f  failure  by t h e age  of  40-50 y e a r s ; 35  f o r a c h i l d with  years f o l l o w i n g diagnosis  diabetes  life  expectancy  i s about  (Hamburg e t a l , 1 9 8 2 ) .  C o m m u n i c a t i o n B e t w e e n C l i e n t and P r a c t i t i o n e r Diabetes i s p a r t i c u l a r l y etiological quite  f a c t o r s , disease  difficult  p r o c e s s and t r e a t m e n t a r e a l l  c o m p l e x (Hamburg e t a l , 1 9 8 0 ) .  become an i n t e g r a l p a r t  C l i e n t education  because c l i e n t  care.  Since  the d i s c o v e r y  of i n s u l i n  taught t h e i r  patients with  diabetes  d i e t and e x e r c i s e  diabetes  education  believed  that  has  o f t h e management o f d i a b e t e s ,  necessitated  their  to understand; the  i s p a r t i c i p a t i n g i n h e r own  health  i n 1921, p h y s i c i a n s  to take t h e i r  insulin,  r e g u l a r l y ( E t z w i l e r , 1984).  watch  Interest i n  s u r g e d i n t h e 1950's when h e a l t h  c l i e n t s were h a v i n g d i f f i c u l t y  have  educators  due t o a l a c k o f  f u n d a m e n t a l k n o w l e d g e c o n c e r n i n g b a s i c management p r i n c i p l e s . Many p h y s i c i a n s '  understanding of diabetes  arrested  stage  plan  at this  educational  (Johnson,  ( E t z w i l e r , 1984).  interventions without  education  remains  P r a c t i t i o n e r s often  c o n s u l t i n g the l e a r n e r  1982) and t h e a f f e c t i v e a s p e c t s a r e f r e q u e n t l y n o t  considered  when l e a r n i n g o b j e c t i v e s  are prepared f o r a  care  plan. Diabetes education health by the  care  programs today r e l y  p r o f e s s i o n a l s and p r i n t e d m a t e r i a l s ,  audio-visual  instruction.  from  supplemented  E t z w i l e r (1983) has i d e n t i f i e d  d i f f e r e n t l e v e l s of information  education  on i n p u t  programmes. These a r e :  t o be i n c l u d e d  i n diabetes  18 (1) of  Acute i n f o r m a t i o n which i s life  2. term  and p r e v e n t i o n In-depth  of  acute  i n f o r m a t i o n to  complications  essential  for  complications,  for  optimal  protection  i.e.  maintain health,  and p r o v i d e  the  survival.  prevent  long-  functioning  of  all  systems. 3.  C o n t i n u i n g i n f o r m a t i o n p r o v i d i n g a person with  conceptual maintain  understanding of  the  regimen  assessment clients  traditional  to  than  use  the  (Anderson,  specific  1985).  implement  the  guarantee  that  for  on  fit  to  i n C h a p t e r One.  client's  The  methods  newer  frame  be  careful between  (Resler,  1983).  to  diabetes  practitioner's greater  or  methods  care  reference  impact  techniques  educational  a p p r o a c h to of  to  approaches  c o m m u n i c a t i o n has  Simply u s i n g  to  flexibility.  activity  occur  educational  educational  ability  individual's  a collaborative  t r a d i t i o n a l medical the  optimal  T h e r e needs  this  the  will  to  does  not  be  taken  consideration. Health  diabetes:  exists  understand of  the  it  is,  and the  in their  diabetes  impact  professionals  what  complications  with  as  client-clinician of  depends  and the  were d i s c u s s e d  approach  with  and c i r c u m s t a n c e s .  and p r a c t i t i o n e r s  management  into  where  and g o a l - s e t t i n g  The  c o n d i t i o n ; with  and l i f e s t y l e  Which i n f o r m a t i o n f i t s characteristics  the  a  understand  how common i t techniques  knowledge  of  what  ( M a c l e a n and Oram, impact  of  diabetes  ordinary stresses  of it  the  is,  medical  its  symptoms,  management; is  1985).  like It  aspects  to is  but  its  a gap  actually important  on o r d i n a r y l i v i n g and  on d i a b e t e s  (Glasgow,  of  1983).  live to the  19  Medical  literature  living  with  Oram,  1985).  has j u s t  recently  addressed  d i a b e t e s and what i t i s r e a l l y  THE HERMENEOTIC Construction  MODEL OF CLINICAL  o f the I l l n e s s  the i s s u e of  like  ( M a c l e a n and  PRACTICE  Experience  Only o u r c o n s t r u c t s o f i l l n e s s can be known to us, not the i l l n e s s e s themselves. ( B o u l d i n g , 1976)  Disease (Kleinman, relation  and i l l n e s s  1983).  We  to i l l n e s s ,  (Gurwitsch,  1954).  are explanatory concepts,  can o n l y u n d e r s t a n d i f we u n d e r s t a n d  Illness  i s shaped  governing perception, l a b e l l i n g , (Kleinman,  issues  of concern models;  understood provides the  are fundamentally  o f the i n t e r p r e t i v e  pathology  interpretations  by c u l t u r a l  ofi t  factors  e x p l a n a t i o n and v a l u i n g  practice  semantic  to the p a t i e n t  meaning-centered since  illness  traditional  e d u c a t i o n becomes  a c r o s s m o d e l s ; and t h i s  aspects of healing  The  i t deals with  p o o r l y managed u s i n g  to n e g o t i a t i o n  can be  or i n t e r p r e t i v e .  i s threefold:  t h e method f o r p a t i e n t  an a p p r o a c h  a  and a l l c l i n i c a l  hermeneutic  model  as a t r a n s l a t i o n  cognitive  suggested  clinical  t o be f u n d a m e n t a l l y  transactions value  (1981) have  to understanding  considered  their  act i n  1978).  Good and Good approach  how p e o p l e  not e n t i t i e s  approach  o f t h e r a p e u t i c a l l i a n c e s and  (Good  and Good,  1981).  2 0 The specific reveal  diabetes  regimen r e q u i r e s  behaviours,  therefore  d i s t u r b i n g l y low  1985).  and  Social learning theories  her  skills  ability or  particular  behaviours  a need f o r  strategies.  point  out  important  (or l a c k of)  ( G l a s g o w and  with  variables  their  value;  problematic  McCaul, 1982).  Glasgow  and  variables,  development of s p e c i f i c i n t e r v e n t i o n be  a t t r i b u t e d to  communication because of d i s c r e p a n c i e s  p a t i e n t ' s v i e w and  Janz,  for engaging i n  i n t e r a c t i o n between t h e s e  the  studies  i n d i v i d u a l ' s knowledge, b e l i e f s about  Much o f n o n - c o m p l i a n c e can  client-clinician  ( B e c k e r and  p e r f o r m c e r t a i n b e h a v i o u r s and  incentives  M c C a u l e m p h a s i z e d the implying  an  to  s u r p r i s i n g that  c a p a b i l i t i e s a v a i l a b l e to deal  s i t u a t i o n s ; and  the  i t i s not  p e r f o r m a n c e o f many  l e v e l s of compliance  i n f l u e n c i n g adherence: h i s or  the  the  biomedical  model ( B e c k e r and  poor between Maiman,  1975). The  biomedical  f o c u s e s on  the  sociocultural  health  and  Kleinman  inherent illness  of s i c k n e s s  dependency (Peters,  s h a p e d modern m e d i c i n e  f r a m e w o r k s o f b e l i e f and  are  Emotional, psychosocial course  has  b i o l o g i c a l - r e d u c t i v i s t paradigm  Good (1977) and reductionism  model t h a t  and  1980).  and  action  ( 1 9 8 1 ) have r e j e c t e d  i n the  biomedical  social and  as w e l l as  familial  s h o u l d not  anger play  be  ignoring (Mishler, the  1981).  physical  model c l a i m i n g  that  b i o l o g i c a l concepts.  factors also ignored  influence  since  anxiety,  a m a j o r r o l e i n l e a r n i n g and  the fear,  compliance  21  C o m m u n i c a t i o n Between Medical of  their  knowledge  own v i e w s o f  doctor's  awareness,  doctor's  explanation  (Kleinman et definition of  the  is  case,  but  only  patient's  repertoire  potentially knowledge symptoms  Joint  to  be  for  idiosyncratic  significant elicit  behaviour social  into  of  to  analysis  of  illness  Kleinman  (1978)  symptom construction  collaboration in in  the  this  management  of  health-promoting jargon  patient's  that  life,  be a l t e r e d  while  confidence  protects  medical  increasing  and a l l o w i n g  greater  the  the  for providing in  what  consultations  1983). develop their  personal  illness  tools  and  the  highly  (Good and Good,  constructs  and s y m b o l s  realities  endorsed  to  terms  the of  joint  d e c i d i n g on f u t u r e  1986).  provide  beliefs  in  prescribed  to  medical  i n the  patient  understand  (Kleinman,  sciences  success  behind  patients'  experiences  i n order  crucial  opportunities  beliefs  when  often  models  Gaining insight  is  of  health  the  ( C h r i s m a n and K l e i n m a n , Individuals  regimen  s h a r e d and n e g o t i a t e d :  gives  look  action  hiding  of  outside  participation in  as w e l l  maladaptive  that  treatment  involvement  should  often  Practitioner-patient  of  patient  i n a marked d i s t o r t i o n  and the  provides  knowledge  by the  reality,  indicative  Instead  Clinician  interpreted  resulting  1978).  p h y s i c i a n from  and  clinical  reality. not  education. the  al,  is  and t r e a t m e n t  clinical  process  Client  that  condenses the  context  the  A n t h r o p o l o g y and the for  semantic  and  and t h e r a p e u t i c  E n g l e h a r d t ' s view  a network  clinician  of  of  1981). of  must  client's interpretive  hermeneutic interactions. disease  and  illness  22  as r e l a t i o n s h i p s and This  social  elaborated  Kleinman s  l a y e r s of meaning i n i l l n e s s : symptoms) i n v o l v e s an  The  the  idioms  different  The  per  where t h e r e  be  cancer  m i s s e d the  illness  level  (80%)  way  third  no  (Good and  Good,  The  The  as  p a r t of one's l i f e  the  classic  reflect  1981).  solely  elicited,  This i s  views others burden o f the on  brings evident  illness,  have o f  for  sickness  illness. this level  and  illness. the  s i g n i f i c a n c e of  i n which other  exacerbation.  oscillates  process  1 9 8 3 ) . O t h e r symptoms a r e a b s o r b e d l i k e  a f f e c t i n g o n e ' s s e n s e o f m o u r n i n g or  illness  p r o b l e m s become  sickness  In the  chronic  of  labelling  e x p l a i n i n g s i c k n e s s , symptoms a r e a m p l i f i e d ( C h r i s m a n  Kleinman,  of  ' d e n i a l ' of  s i g n i f i c a n c e that  T h i s i s p r e v a l e n t w h e r e the and  qua  illness.  (1977) f o c u s e d  layer describes world  or  network which v a r i e s i n  deeper meaning i s  cultural  meanings of  3)  between r e m i s s i o n  the  diagnosis  Symptoms d o n ' t  of a s t i g m a t i z i n g nature.  that Sontag  types  o f d i a g n o s e s a r e made  meaning of  or A.I.D.S.  other  than  (symptoms  i s a l a c k o f t e c h n i c a l c o n t r o l o v e r the  Kleinman f e e l s  and  cent  d i s t o r t e d , a d d i n g t o the  imbedded.  first  distress.  simple  second l a y e r i s the  instance  The  and  i n any  personal  meaning to i l l n e s s e s  may  pain  c l i e n t ' s h i s t o r y and the  concept.  o u t l i n e s four  symptoms f o r m a s y m b o l i c  Eighty  deligitimizing 2)  1)  grid  c u l t u r e s ( f o r example, c o v e r i n g  illness). f r o m the  concept of  i n t e r p r e t a t i o n o f symptoms and  of  abnormalities  semantics of  model  model.  (1986) a n a l y t i c a l  1  somatic  explanatory  model i s more open t o t h e  orthodox biomedical  disease;  the  control.  and  a sponge,  Treatment of  the  23  illness  requires  distress 4)  responding  as w e l l  as  The f o u r t h  physical  level  overt  is  or  vehicle  for  1980).  E x p l a n a t o r y models  clinical  illness  (3)  pathophysiology;  episodes:  practitioners is  1980).  guide  choices  model is  certain tacit  and not  course  issue  conscious  problems  five (2)  model  (EM) o f  are  the  main  (Kleinman,  major  onset  sickness;  (EMs) a r e h e l d care  and  questions  of  symptoms;  (5)  treatment  i n the  clinical  they  undergo  system  to  change  of  partly that  explanations  sickness and  between  and t r e a t m e n t personal  to  and  An e x p l a n a t o r y  outside  directs  of  awareness.  reasoning  An EM  along largely  Categorization  possess. fairly  the  It  is  of  characteristic  frequently; The  the  and s p e c i a l i z e d  1980).  cast  and  (Kleinman  and p o p u l a r EMs a r e  contrasts  of  encounter  sickness.  by e x p e r i e n c e .  knowledge  patients  them more f o r m a l o r g a n i z a t i o n and  usually  invalidated  (Kleinman,  of  therapies  and  by both  s y s t e m s and t r a n s a c t i o n  or u n a m b i g u o u s .  professional  Discrepant  of  experience  coherent  popular medical of  reality  etiology;  Both p r a c t i t i o n e r  than  they  rarely  of  answer  explanations  EMs a t t r i b u t e s  EMs t h a t  nature  (4)  on a c o g n i t i v e  specificity  are  (1)  among a v a i l a b l e  lines.  popular  explanatory  E x p l a n a t o r y models  to  the  EMs o f f e r  partly  based  seek  health  meaning on the is  explicit  construction  models  in a l l  a central  1978,  social  psychosocial  1978).  Explanatory  models  client's  self-knowledge.  for  (Kleinman,  the  complaints.  the  illness  the  to  of  and p o p u l a r EMs  'diffused'  nature  of  'institutionalized' folk  sickness  medical  can l e a d  to  knowledge. communication  2 4  Explanatory  models d i f f e r  of a b s t r a c t i o n , l o g i c a l are  i n their  articulation,  a n a l y t i c power,  metaphor  level  and i d i o m .  EMs  embedded i n l a r g e r c o g n i t i v e s y s t e m s , w h i c h i n t u r n a r e  anchored i n p a r t i c u l a r c u l t u r a l arrangements, i . e . the h e a l t h therapeutic  options  and s o c i a l s t r u c t u r a l  care  system.  that are d i s s i m i l a r i n technological  s o p h i s t i c a t i o n and a c t u a l t h e r a p e u t i c  efficacy.  m o d e l s e m p l o y e d by c l i n i c i a n s f r e q u e n t l y from b i o m e d i c a l be p r a c t i c a l l y disease  and o t h e r  but when a p p l i e d  concern f o r i l l n e s s health  Explanatory  diverge  considerably  'professional* theories  e f f e c t i v e (Kleinman,  oriented,  EMs l e a d t o  i f they are to  1980). B i o m e d i c a l by c l i n i c i a n s  f a c t o r s as w e l l ( E n g e l ,  models are  t h e y may  1977).  Only  reflect  modern  p r o f e s s i o n a l s are p o t e n t i a l l y capable of t r e a t i n g both  disease  and i l l n e s s Explanatory  ( K l e i n m a n e t a l , 1978). m o d e l s need t o be d i s t i n g u i s h e d f r o m  b e l i e f s about s i c k n e s s belong t o the h e a l t h sectors  and h e a l t h  ideology  care.  These g e n e r a l  sickness, (Kleinman,  w h e r e a s EMs 1980).  single referents  need t o be a n a l y z e d  P a t i e n t and f a m i l y but r e p r e s e n t  episodes of  EMs  often  (Good,  beliefs,  e x p e r i e n c e s and f u n c t i o n as t h e c l i n i c a l  setting  do n o t p o s s e s s  semantic networks that  models i n t e r r e l a t e i l l n e s s  care  i n a concrete  l i n k a v a r i e t y o f c o n c e p t s and e x p e r i e n c e s Explanatory  beliefs  o f the d i f f e r e n t h e a l t h  and e x i s t i n d e p e n d e n t o f and p r i o r t o g i v e n  general  loosely  1977).  norms,  and  guides to  decision-making. From an ' e t h n o m e d i c a l ' p e r s p e c t i v e , model  (and the semantic s i c k n e s s  i t i s the  explanatory  n e t w o r k i t c o n s t i t u t e s and  25  expresses the  f o r a given s i c k n e s s episode)  that s o c i a l l y  ' n a t u r a l h i s t o r y of i l l n e s s ' which u n l i k e the ' n a t u r a l  h i s t o r y of d i s e a s e ' w i l l  differ  EM outcomes are the r e s u l t  between h e a l t h care systems.  of a t r a n s a c t i o n a l process l i k e n e d to  t r a n s l a t i o n between languages (Kleinman, Clinical elicit  and  techniques  analyze  Elicitation  1980).  i n c r e a s e the p r a c t i t i o n e r ' s a b i l i t y  the meaning i l l n e s s has  techniques  'decoding'  of h i s semantic  In c l i n i c a l  f o r the  client.  model and  (Kleinman,  i l l n e s s network (Good and Good, 1981).  but spontaneously  transmit at l e a s t  understanding  between the c l i e n t and  clinician.  the personal and  what the p r a c t i t i o n e r w i l l  Eliciting  social  meaning he  the  do,  and  h i s own  the c l i e n t ' s world important  •cut and  to enter It i s  since c l i e n t s most o f t e n  f o r t h e i r l a c k of u n d e r s t a n d i n g .  There i s no  d r i e d ' set of questions to be used.  Following this e l i c i t a t i o n , another.  The  to o b t a i n a  the disease experience.  to demonstrate t h i s i n t e r e s t  and  therapeutic goals.  'empathic w i t n e s s i n g ' technique  to understand  practitioners  a t t a c h e s to  happen to him  step i n t h i s process i s f o r the p r a c t i t i o n e r  miniethnography u s i n g an  fault  facilitating  model g i v e s the p r a c t i t i o n e r knowledge of the b e l i e f s held  d i s o r d e r , h i s e x p e c t a t i o n s about what w i l l  first  their  1980).  about h i s i l l n e s s , his  elicit  part of  Kleinman et a l (1978) proposed a process f o r  client  the  t r a n s a c t i o n s , p r a c t i t i o n e r s commonly do not  the p a t i e n t EM  to  i n the hermeneutic model i n c l u d e  i n v e s t i g a t i o n of the c l i e n t ' s explanatory  EM  produces  one  EM  i s analyzed  Comparison of the c l i e n t model with the  i n terms of  practitioner's  26  model e n a b l e s t h a t may  the  practitioner  to i d e n t i f y  cause problems f o r c l i n i c a l  c o m p a r i s o n s h e l p the  clinician  The  next  n e g o t i a t i o n s between t h e s e been made e x p l i c i t . t h e o t h e r EM, language.  o f the o t h e r The the q u a l i t y  key  EM  interests.  involves  potentially  (Kleinman,  clinical  e x p l a n a t o r y models of c l i e n t s  component o f h e a l t h c a r e .  Kleinman,  1980). and  The  clients  can  shared  evaluate  task: interaction  practitioners  T h r o u g h an u n d e r s t a n d i n g  reach  EMs  1980).  a p p r e c i a t i o n o f each o t h e r ' s frame of r e f e r e n c e , h e a l t h p r o v i d e r s and  new  i n f l u e n c e the  t h a t t h e r e a r e ways t o one  have  i s transferred into  r e s t r u c t u r e d i n the  e t a l , 1978;  of at l e a s t  communication with c l i e n t s between t h e  can  framework suggests success  and  process  Hence, the a n a l y z e d  r e s t r u c t u r e d EM  and  (and  e x p l a n a t o r y m o d e l s , once t h e y  a c t o r s (Kleinman  EM  i n values  clinical  which i s consequently  The  of h i s  e d u c a t i o n i s most a p p r o p r i a t e .  conflicts  s t e p i n the  Such  e x p o s i t i o n to c l i e n t s  what s o r t o f c l i e n t  Comparisons a l s o c l a r i f y  management.  know w h i c h a s p e c t s  e x p l a n a t o r y model need c l e a r e r f a m i l i e s ) and  major d i s c r e p a n c i e s  is a  and care  meanings of d i a b e t e s .  By  t r a n s l a t i n g a c r o s s e x p l a n a t o r y models, h e a l t h care p r o f e s s i o n a l s can  develop  to the  c a r e p l a n s w h i c h can  p h y s i c a l and  emotional  be  n e g o t i a t e d t o be  needs o f c h i l d r e n w i t h  appropriate diabetes.  27 III.  PSYCHOLOGICAL CONTEXT OF  T h e r e i s no  s i n g l e i n t e g r a t i v e theory  issues  i n diabetes.  According  (Ajzen  and  1980)  Fishbein,  systematic  use  o f the  to  the  (see  feeling;  this  can  psychosocial  and  b e l i e f s and  f o r e x a m p l e , B e c k e r and self-interest  Action'  make  a v a i l a b l e t o them.  Several health  Maiman,  1975).  connects t h i n k i n g  l e a d i n g t o i n t e n t i o n a l human a c t i n g .  understand (Gowin,  f o r the  people act r a t i o n a l l y  information  These m o d e l s p r o p o s e t h a t  STUDY  'Theory of Reasoned  m o d e l s have been u s e d t o e x p l a i n h e a l t h decision-making  THE  Learners  and who  become s e l f - i n t e r e s t e d and s e l f - d i r e c t e d  1981). C h i l d r e n l e a r n what i t means t o be  capacity  f o r m a k i n g d i s c o v e r i e s depends on  fostered  by  a k i n to  t r a i n i n g and  g u i d e d by  'diabetic*. natural  intellectual  The  ability,  e f f o r t which i s  artistry. Any m o d i f i c a t i o n o f an a n t i c i p a t o r y f r a m e w o r k w h e t h e r c o n c e p t u a l , p e r c e p t u a l or a p p r e c i a t e i v e i s an i r r e v e r s i b l e h e u r i s t i c a c t w h i c h t r a n s f o r m s our ways o f t h i n k i n g , s e e i n g and a p p r e c i a t i n g i n hope o f a t t u n i n g o u r u n d e r s t a n d i n g , p e r c e p t i o n or s e n s u a l i t y more c l o s e l y t o what i s t r u e and r i g h t . Ornstein To  e d u c a t e i s t o change the  (Gowin, 1981). education  as  The  should  applied  to the  i s helping  that  the  client-clinician  learning  and  relationship in  employ M a r i a M o n t e s s o r i ' s p h i l o s o p h y t o become i n d e p e n d e n t " .  i n t e g r a t e b o t h the  recognizing  m e a n i n g o f human e x p e r i e n c e  newer c o n c e p t s o f t e a c h i n g ,  treatment of d i a b e t e s s "education  (1972)  intellectual  p r a c t i t i o n e r and  and  the that  Communication  emotional  features  l e a r n e r have a common  2  goal — combining and  Pelse,  i d e n t i f i c a t i o n and s e l f - a c t u a l i z a t i o n  (Groen  1 9 8 2 ) .  ' P e r c e p t i o n s ' form the b a s i s f o r persons their  8  own i d i o s y n c r a t i c m e a n i n g s .  to construct  Perceptions are central to  l e a r n i n g according t o 'cognitive l e a r n i n g theory' cognitive  structure i s hierarchically  (Ausubel,  1 9 6 3 ) .  organized  where concepts  L e a r n i n g , f o r e x a m p l e a c q u i r i n g k n o w l e d g e and  problem s o l v i n g , which i n v o l v e s a process  of conceptual  change.  When new p a r a d i g m s c h a l l e n g e t h e o l d , a s t a t e o f r e v o l u t i o n a r y change r e s u l t s be  (Kuhn,  1 9 7 7 ) .  s o l v e d f o r which they  specifically  Learners  often confront  lack specifically  r e l e v a n t c o n c e p t s and  relevant learning experiences.  d e v e l o p m e n t i n one c o n t e n t  problems to  Weak  a r e a may p r e c l u d e  conceptual  t h e l i n k i n g o f new  i n f o r m a t i o n t o a p p r o p r i a t e , p r e v i o u s l y h e l d i d e a s and t h e l e a r n e r may n o t be aware o f c o n s e q u e n t c h a n g e s i n m e a n i n g . Learners events  must l e a r n t o i s o l a t e  and e x p e r i e n c e s  and l a b e l  recurring patterns i n  ( i . e . form c o n c e p t s )  and t o g e n e r a t e  m e a n i n g by l i n k i n g c o n c e p t s  w i t h i n a web o f a p p r o p r i a t e  p r o p o s i t i o n s . Without  conceptual  proceeds  such  understanding,  by r o t e and u n f a m i l i a r e x p e r i e n c e s  or m i s i n t e r p r e t e d (Gowin,  d e v e l o p m e n t o f c h i l d r e n was p r o v i d e d and how t h e s e  contributed structures ( 1 9 6 9 )  were r e l a t e d  the c o g n i t i v e  by J e a n P i a g e t ' s n o t i o n s o f  to behaviour.  t o t h e d e b a t e on t h e s o u r c e s through  unintelligible  1 9 8 1 ) .  A major i n f l u e n c e i n u n d e r s t a n d i n g  reality  remain  new l e a r n i n g  Piaget  o f l a n g u a g e and m e n t a l  h i s 'genetic epistemology  viewed c h i l d r e n as b u i l d e r s o f t h e i r  1  approach.  Piaget  own i n t e l l e c t u a l  29  structures, talking  l e a r n i n g without  about  framework  anything i n  includes  and c o g n i t i o n  as  the  a self-confident questions to  the  being  their  key  to  world.  ready  and c a p a b l e  own e x p e r i e n c e .  development the  of  explained  of  Piaget's  perception,  construction  Piaget  and i n t e r p r e t  of  abstraction  primitive,  why c h i l d r e n  i n f o r m a t i o n i n ways t h a t  but  ask  may seem  strange  adults. A shift  operations, nature  of  i n research  i n the  emphasis  Piagetian  knowledge  educational  settings.  research  cognitive  structures  Several  point  to  a s c r i b i n g meaning t o  1984). which  Since they  people  system.  knowing i n i t s in  described  the  as:  (Champagne,  1980).  we b e s t work w i t h effectively  to  experience  one  of  1973); A key  can l o o k  on the  of  the  lines to  1968);  they  may use  a  strategy rationality been  'alternate  'pre-instructional question  along  identify  and p o w e r f u l  c h i l d r e n know have  that  same  Novak and Gowin,  language  (Ausubel,  and  in  1984).  The i n d i v i d u a l i t y and what  c h i l d r e n so  at  a unique  pedagogical  causal  conceptions'  becomes,  "How can  language  know?"  Metaphors are often and J o h n s o n  (Ault,  science  content  converge  n o r m a l l y aware  'preconceptions'  (Driver,  of  the  in  i n recent  structures  own r i g h t .  frameworks'  by c h i l d r e n  importance  Language i s  structure  interpreting  Novak and G o w i n ,  not  t h i n k and a c t ,  conceptual  observed  are  to  directions  Knowledge and c o g n i t i v e event  o c c u r r e d from a n a l y z i n g  applied  the  (Ault,  has  tradition,  a c q u i r e d or  education  for  taught,  (1980)  asserted  used that  to  explain  new c o n c e p t s .  our c o n c e p t u a l  system  Lakoff is  30  fundamentally input  metaphorical.  and r e o r g a n i z e  metaphor  is  terms  another.  of  to  understand  and mere w o r d s , 1980). like  ideas  but  experience  implied  of  and a r e  one  just  occur  stated without  of  a matter  experience  thing  of  what  and  Metaphors  thematization  a  in  Johnson,  illness  a pre-reflective  of  language  (Lakoff  perspective. at  The e s s e n c e  kind  comparisons o f  an i d i o s y n c r a t i c that  not  environmental  1980).  and e x p e r i e n c e  modalities  comparisons  implied  (Labinowicz,  Metaphors are  Metaphors are  revealing  Metaphors o r g a n i z e  is  are  level  of  (Kugelmann,  1983). The metaphor experiences language  is  are g i v e n  can  clinicians.  the  shared meanings,  contribute  to  medication For  those  only  might  comparison with In order it  is  1984).  with one  appropriate  take'  of  and  an a n a l o g y  and i n s u l i n  first  the  illness  identify  and  ' h a v i n g to must  of  to  give' judiciously.  mechanics  and a i r  of  in  1979).  diabetes  what  the  and  treatment  be u s e d  fuel  (Whitt,  meaning  client  and dynamic way  Any a n a l o g y  choose  share to  a fluid  metaphorical  between  a c h i l d who u n d e r s t a n d s  glucose to  to  clinical  although  misunderstanding  between models  'having  (Rhodes,  example,  combustion  to  Metaphors p r o v i d e  approach d i s c r e p a n c i e s available  major way i n w h i c h  they  holds know.  for  children,  3 1  IV. Children and  CHILDREN * S UNDERSTANDING OF I L L N E S S t o d a y seem t o d i s p l a y a g r e a t e r  awareness w i t h  Piliavin, presents  regard  to t h e i r environment  a c o m p l e x i n t e r p l a y o f b o t h a f f e c t i v e and c o g n i t i v e  The i l l n e s s  psychological  substrate  heightened  propensity  to f i l l  interpretations  voids  determined.  their  to f a c i l i t a t e  care  healthy  activities;  ill  ( G r a t z and  i n the l i t e r a t u r e  Utilizing  children indicated  Children  perceive  (Natapoff, 1 9 7 8 ) and H e i n z W e r n e r ,  have e x a m i n e d t h e d e v e l o p m e n t a l o r d e r  body i n t e r i o r  and i l l n e s s .  begin with  h e a l t h and  t h a n on a c o n t i n u u m as  the t h e o r i e s of Jean Piaget  concepts of health  them  that a person i s healthy  a s two d i f f e r e n t c o n c e p t s r a t h e r  researchers  or c h r o n i c a l l y  as a p o s i t i v e a t t r i b u t e e n a b l i n g  he c a n do what he w a n t s t o do.  cited  In professionally  p r i o r conceptions (or  interviews with  to p a r t i c i p a t e i n d e s i r e d  often  seems t o be  1 9 8 0 ) .  c h i l d r e n see h e a l t h  illness  and a  a n t i c i p a t e s the  the a c t u a l experience  c h i l d r e n who a r e e i t h e r a c u t e l y  Natapoff's  if  How a c h i l d  1 9 6 6 ) .  and c u l t u r a l l y  misconceptions) i n order  that  onto a  i n knowledge w i t h i d i o s y n c r a t i c  i s important to consider  Piliavin,  (Whitt,  i s projected  c o n c e r n s a b o u t body i n t e g r i t y  onset of i l l n e s s or i n t e g r a t e s  dealing with  levels  o f l i m i t e d c o g n i t i v e and l a n g u a g e  (Kessler,  both i n d i v i d u a l l y  and f a m i l y  experience of a c h i l d  abilities,  it  ( G r a t z and  The c h i l d ' s c o n c e p t u a l i z a t i o n o f i l l n e s s  1 9 8 0 ) .  components, both a t t h e p e r s o n a l 1 9 7 9 ) .  sophistication  Children's  of children's  conceptions of the  g l o b a l a w a r e n e s s and d e v e l o p by  32  increasing differentiation and  from a s t a t e of r e l a t i v e  l a c k of d i f f e r e n t i a t i o n  sophistication of i l l n e s s  to a s t a t e of i n c r e a s i n g  (Crider, 1981).  (Bibace  and  Walsh, 1981;  c h i l d r e n r e f e r r e d to a g r e a t e r and  Piliavin,  1980).  conventional the  i n t e n t of medical  revealed  (Campbell,  development staff  (Brewster,  1982).  Older  An i n v e s t i g a t i o n  r o l e of the  sequence of  Brewster  to address t h i s m a t u r a t i o n a l  (Gratz  to a l t e r a t i o n s i n  medical  i n f o r m a t i o n about t h e i r  through a p r e d i c t a b l e three-stage  cause  children defined  1975).  p r o c e d u r e s and  that c h i l d r e n process  1982).  number o f e x t e r n a l c a u s e s  with references  r o l e behaviour  of  of c o g n i t i v e  Brewster,  W i t h i n c r e a s i n g age,  i l l n e s s more s p e c i f i c a l l y  of  Children's explanations  corresponded to P i a g e t i a n stages  development  globality  (1982)  staff  illnesses  conceptual urged  medical  sequence to h e l p c h i l d r e n  under s t a n d . To  date l i t t l e  research  has  of c h i l d r e n ' s knowledge of d i a b e t e s child  l i v i n g with  illness  and  understand face  t o be  what i t i s l i k e  (Allen  nature a  DIABETES  d e a l i s demanded o f c h i l d r e n who  et a l , 1984).  i n f o r m a t i o n about d i a b e t e s  affective  and  CHILDREN AND  demands o f t e n e x c e e d t h e  l e a r n i n school  the  diabetes.  V. A great  been done r e g a r d i n g  (Riis  understanding,  chronic  children's capacity  Children with i n the  et a l , 1982).  have  To  diabetes  n e u t r a l way facilitate  to cannot  that children cognitive  h e l p i n g p r o f e s s i o n a l s must be  and  attuned  33  to  t h e way c h i l d r e n i d i o s y n c r a t i c a l l y  and  concerned with  their  clients  perceive  particular  1  their  diabetes  understanding  of  diabetes. What t h e c h i l d w i t h on  h i s or h e r age.  cheat;  injections,  diabetes  h a s t o p u t up w i t h  A t age 5, t h e c h i l d knows i t i s w r o n g t o given  sweets, equated w i t h  by l o v e d  ones, continue  l o v e and a p p r o v a l ,  child  and  accept  future  can understand, the d i e t .  but not l i k e  and a r e p a i n f u l ;  a r e r e s t r i c t e d ; and  r e g u l a t e d m e a l t i m e s may make t h e c h i l d f e e l the  depends  r e j e c t e d . By age 10,  injections;  By age 11 o r 12, t h e c h i l d  can understand  t h i n k s i n t o the  ( C r a i g , 1982). The  aspects  f o l l o w i n g d i s c u s s i o n i s o r i e n t e d around the f i v e  of the explanatory  highlight  current  models o f i l l n e s s i n order to  knowledge.  C h i l d r e n ' s I d e a s a b o u t t h e Cause o f I l l n e s s Diabetes  i s a heterogeneous d i s o r d e r that i s only  u n d e r s t o o d hence i t i s n o t p o s s i b l e t o p r o v i d e explanations being only  f o r why i t o c c u r s .  punished f o r being avoided  A c h i l d may f e e l  candy he w o u l d n o t have d i a b e t e s .  blaming themselves f o r t h e i r 1982).  satisfactory t h a t he i s  'bad* o r may b e l i e v e t h a t i f he had  f a c t o r s are i m p l i c a t e d , parents  Rosenbloom,  partly  may f e e l g u i l t y  child's  Since  hereditary  and d e p r e s s e d ,  i l l n e s s ( J o h n s o n and  34 Children's  Ideas about the  Most y o u n g s t e r s although  Course of  seem t o a d e q u a t e l y  some have c o n s i d e r a b l e  Overprotection  by  parents  r e s p o n s i b i l i t i e s may  or  does not illness,  about i l l n e s s  (Eiser,  diabetic  b o y s and  of t h e i r  lives  too e a r l y a l l o c a t i o n  and  but  may  1983).  girls do  affect  psychosocial 'brittle'  consider  not  comprehend t h e  significantly  their  their  with  and  feel  diabetes  their daily  occupational, educational  t h e m s e l v e s and  their  care  children feel  s t i g m a t i z e d by  'different'  and  or  adversely  knowledgeable  (Davis, about  A l l e n et a l , 1984).  a number o f p r o b l e m s have  the  result  disease  when c h i l d r e n t e a s e  i n lowered  self-esteem  and  avoidance  Other c h i l d r e n  •specialness' i n a manipulative  teachers.  or  I n some c h i l d r e n f e e l i n g s o f  in interpersonal relationships. their  a t t i t u d e s about  R o s e n b l o o m ( 1 9 8 2 ) f o u n d t h a t some  t r e a t them d i f f e r e n t l y .  l e a r n t o use  treatment  or m a r i t a l g o a l s  ( B r o w n , 1983;  diabetes,  J o h n s o n and  or d i s t r u s t  their  or i t s  activities  many c h i l d r e n seem t o have h e a l t h y  appeared.  of  part  what i s e x p e c t e d i n management; a c t i v e l y  participating i n their Although  beliefs  indicated that  seriousness  R e c e n t s t u d i e s f o u n d c h i l d r e n t o be  diabetes  a t t i t u d e s and  t h e i r d i s o r d e r as a n o r m a l  interfered affected  change c h i l d r e n ' s k n o w l e d g e  Early research  These c h i l d r e n d i d not  parents  1980).  of  development of  significantly  disorder.  being  (Johnson,  c o n t r i b u t e to s i g n i f i c a n t  o f h e a l t h and  adults  diabetes,  ( C r a i g , 1982).  Illness  1965).  cope w i t h  difficulty  problems, f r e q u e n t l y l e a d i n g t o the diabetes  Diabetes  fashion with  In a d d i t i o n , noncompliance with  one  or  more a s p e c t s common.  of  the  p r e s c r i b e d management  The p r e a d o l e s c e n t  complications  i n the  child  future  As c h i l d r e n d e v e l o p understand  diabetes.  ability  grasp  to  limitations,  that  about  youngsters'  discuss  at  no  home  According  Children  become  (Allen  et  about al,  to Bierman  f a m i l y members i n v o l v e d .  Children with  difficulties  altered  diabetes  family  their  (Gross,  1983).  be aware o f  gender  need  to  with  illness;  Adolescent their  whereas  boys  efficacy Nathan e t with  to  to  the  self-esteem  diabetes  (1984) have  functional  future  youngster  parents worry  disease,  suggesting  are d i f f i c u l t  increase It  to  is  when a c h i l d  geometrically well  of  differences of  or deny  of the  (Grossman e t  that  anxiety, than the  with  r e g a r d to  peer  group r e l a t i o n s h i p s . about  c o n t r o l of relevance al,  of  and  diabetes,  diabetes  1983).  in establishing  coping  self  their  Work done  reconfirmed previous findings difficulties  the  stress.  p o i n t e d out  align feelings  degree  has  by  documented  higher l e v e l s  establishment  disconnect  al  their  the  the  w o r r i e d more about  R e s e a r c h e r s have  more c l o s e l y  own e f f i c a c y  of  or  to  brings  p r o b l e m s and i n t e r p e r s o n a l c o n f l i c t s  and the  girls  also  d i r e c t l y or i n d i r e c t l y by  experience  depression, peers  that  able  on the  and Toohey ( 1 9 8 0 ) ,  number o f  is  of  1984).  management  control  toll  concepts  the  diabetes,  diabetic  development  an e m o t i o n a l  c u r r e n t management concerns  increasingly  a poor p r o g n o s i s  believed  threats  relevance.  more a d v a n c e d d i s e a s e  diabetes.  primarily  meaning o f  very  present-oriented;  cognitive  w h i c h may t a k e  C h i l d r e n with their  the  have they  This  is  program i s  that  peer  by  children  group  36  relationships  due t o a s e n s e o f d i f f e r e n t n e s s and i s o l a t i o n .  Assessments o f p e r c e p t i o n s diabetes  of s t r e s s i n c h i l d r e n with  ( K o s u b and K o s u b , 1982) e m p h a s i z e d t h e need t o d e s i g n  instruments  for children.  Examination  of the r e l a t i o n s h i p  b e t w e e n p s y c h o s o c i a l v a r i a b l e s and management i n d i a b e t i c c h i l d r e n and a d o l e s c e n t s self-esteem  development  suggested (Gould,  1985).  t h a t c h i l d r e n have a s t r o n g w i s h illness  from t h e i r  possibility illness  o f t a l k i n g about i t ,  Sanglade  to erase  consciousness;  thereby  (1981) f o u n d  t h e body and t h e denying  themselves the  o r even i m a g i n i n g  it.  The  i s n o t t h e i r s t o d e a l w i t h , and s i n c e i t does n o t b e l o n g  to t h e i r  inner world,  process.  Something i n the s e l f  very  the importance of f o s t e r i n g  i t does n o t l e a d t o a p s y c h o l o g i c a l i s b r o k e n and t r y i n g  t o deny i t s  e x i s t e n c e may r e s t o r e a good s e l f image ( S a n g l a d e ,  In t h i s v e i n , Koski combined w i t h psychiatric  i n t e r v i e w s and TAT s t o r i e s , Being  images,  diabetic,  with observations  on  o r b e c o m i n g o n e , may  o r t h r e a t e n t o i n t e r r u p t one's s e n s e o f i n v i g o r a t i n g  sameness and c o n t i n u i t y . identity  m e a s u r e s o f body  1981).  e v a l u a t i o n s o f p e r s o n a l i t y f e a t u r e s b a s e d on  c h i l d r e n ' s drawings. interrupt  (1982) u t i l i z e d  coping  In order  the c h i l d has t o f e e l  to a t t a i n a p o s i t i v e d i a b e t i c  diabetes  as an i n t e g r a t e d p a r t o f  herself.  Children's Understanding Health  educators  of Diabetes  Pathophysiology  may u n d e r e s t i m a t e  d i a b e t e s management r e g i m e .  the complexity  of the  S t u d i e s have shown t h a t p a t i e n t s  37  actually believe  understand (Johnson  expected  e t a l , 1982).  to understand  the pancreas,  insulin,  complications. recognized In  f a r l e s s about d i a b e t e s than p h y s i c i a n s Children with diabetes are  concepts  i n a complex  blood glucose c o n t r o l  The n e r v e s ,  liver  necessary  to t h e i r understanding  work ( C r i d e r ,  and d i a b e t i c  and p a n c r e a s  nor t h e i r f u n c t i o n s u n d e r s t o o d  g e n e r a l , c h i l d r e n know l i t t l e  interrelationship--  about  a r e n o t commonly  prior  to adolescence.  these organs which  of their  a r e not  own b o d i e s and how  they  1981).  Children's Understanding  of Diabetes  Treatment  D a i l y management t a s k s s h o u l d be t r e a t e d other health r e l a t e d  behaviours  (Johnson  as ' g i v e n s '  and R o s e n b l o o m ,  like  1982).  C h i l d r e n ' s and p a r e n t s ' k n o w l e d g e o f d i a b e t e s i s o f t e n simplistic;  lacking sufficient  between i n s u l i n , daily  illness,  e x e r c i s e and s t r e s s t o make a c c u r a t e  management d e c i s i o n s .  insufficient  understanding o f the r e l a t i o n s h i p  Educational efforts  are often  f o r t h e d e v e l o p m e n t o f a d e q u a t e home management  skills  and i n f o r m a t i o n i s 'known' b u t f o r g o t t e n ( J o h n s o n  1982).  An a s s e s s m e n t o f t h e c o n c e p t u a l and b e h a v i o u r a l k n o w l e d g e  of  children with diabetes indicated  d i a b e t e s was d i a g n o s e d problem  solving  predictive  t h a t t h e l e n g t h of time  was n o t r e l a t e d  or s k i l l s .  since  to general understanding,  K n o w l e d g e i n one c o n t e n t a r e a was n o t  of knowledge i n o t h e r areas.  and  age need t o be g i v e n f u r t h e r  and  use o f e d u c a t i o n a l p r o g r a m s ( J o h n s o n C h i l d r e n who b e l i e v e  et a l ,  V a r i a b l e s such  as gender  c o n s i d e r a t i o n i n the development e t a l , 1982).  f u t u r e d i s e a s e c o m p l i c a t i o n s t o be  38  more s e r i o u s care,  especially  interfere are  experience  most  is  skills.  may be a i d e d  skills  area  requiring  interpersonal  It  i n the  b a r r i e r s to of  diet  Children  by i n t e r v e n t i o n s  for  Explaining  once  essential  diabetes  to  assess  the  management  previous  u n d e r s t a n d i n g and c o r r e c t (Johnson et  about  must  means  expect  from  In a l l  possible  The e x i s t i n g identify  what  the  it  cases,  literature to  investigation  examining  d i a b e t e s was  undertaken.  difficulty  is  not  As the  answers  The p a r e n t  at  reinforce  or  capable  should  reprocessing this  of honest  and  1982). the  diabetes,  personal  and  through  be as  out  of  and  child  her l e v e l  with  poor  is  questioning,  pointed  be a c h i l d  home  new q u e s t i o n s  and R o s e n b l o o m ,  children's  of  youngster  H e l p i n g the  has  sufficient.  aspects  misperceptions  her  with  interpersonal  new i n f o r m a t i o n ,  continued  child.  (Johnson  means  a child  surface.  this  programme  1983)  understanding,  communicating with  understanding. as  1982).  diabetes w i l l  and i n t e g r a t i o n  accurate  al,  sophisticated  practitioner  process  coordinate  to  assertive  handling  critical  diabetes  concerns  to  all  to  daily  What seems  management  experiencing  (La Greca,  increasingly  management.  p r o b l e m - s o l v i n g or  and p r o b l e m - s o l v i n g  technique  implementing  i n m a i n t a i n i n g an e f f e c t i v e  situations  care  fewer  beliefs  need  to  hence about  this  39  CHAPTER  THREE  METHODS I.  An e x p l o r a t o r y phenomenology chapter  of  children's  a p p r o a c h was  diabetes  discusses  INTRODUCTION  from  aspects  perspectives  of  of  the  the  the  Research  2.  Characteristics  3.  Rationale  4.  Data C o l l e c t i o n  Procedures  5.  Data P r o c e s s i n g  and A n a l y s i s  for  of  the  investigation  knowledge  employed  Clinical  feelings,  at  of  the  cognitive  child's  point  of  view.  used  to  make  This  explicit  experience:  Sample  RESEARCH DESIGN was  designed  diabetes  about  were  was  beliefs  interpretation  following problems,  An a n a l y s i s using  a  domains.  the  of  of  approach*  diabetes. camp to  obtain  issues, of  diabetes  'conceptual  and a c l a s s i f i c a t i o n  and a f f e c t i v e  children's  c h i l d r e n with  specific  completed  elicit  An ' e t h n o g r a p h i c  conducted  and m e m o r i e s .  to  and t h e i r  diabetes.  children's  beliefs  children's  the  methods  a summer camp f o r  meaning s t r u c t u r e of  of  interviews  descriptions  on  Techniques  conceptualizations  was  focus  Design  II.  medical  to  diabetes  1.  The  used  as  a  inventory'  variables  from  40  Characteristios  of  Children attended Lake  the  aged  asked  diabetic  by l e t t e r (See  of  of  age.  varied  and a l l  nature  Because  by the  were Brad,  were  not  conducted with  throughout  Peter, the  t h o s e who had  were  of  boys  interviewed Cathy,  study.  and  the  province  diabetes to  Because  the  D u r i n g November  girls  homes.  Dianne, K r i s t a ,  of  confidential  camp.  and s e v e n  Todd and T y s o n ) .  this  and c h i l d r e n w i t h  'diabetics'.  in their  of  uniform.  u n i n t e r r u p t e d and  five  the  e d u c a t i o n programs  c h i l d r e n with  after  at  self-management)  Campers v o l u n t e e r e d  until  before  diabetes  throughout  not  been  diagnosed  memories  (compared t o  p l a y the  possible  encountered.  understanding of  playing a c t i v i t i e s ,  1 986,  a r e a were  Kyle,  were  had been h o s p i t a l i z e d  programs d i f f e r  to  Parents  their children  t h o s e who were  and a c t i v i t i e s  assigned  and J a n u a r y  Vancouver  initial  camp a c t i v i t i e s ,  interviews 1 985  to  on  campers,  study.  have  r a n g e d from  investigator.  in role  were  of  study  on p a r e n t s  Conversations  diabetes  p e r m i s s i o n to  l e a r n i n g experiences  participate  99  had p a r t i c i p a t e d i n d i a b e t e s  some s t a g e .  noted  of  Columbia  Camp Kakhamela  and many c h i l d r e n had v i v i d  dependence  children's  A total  A l l diabetics  Children's  of  1985.  two months  diagnosis  degree  Association's  p a r t i c i p a t e d i n the  for  i n the  just  experience.  from a r o u n d B r i t i s h  A p p e n d i x T w o ) . No r e f u s a l s  for  two y e a r s  were  12 y e a r s  Canadian Diabetes  Children  at  8 to  76 d i a b e t i c s ,  participate  time  Sample  Cowichan d u r i n g J u l y  including were  the  living  in  the  (Interviews  Mairi,  Pseudonyms a r e  Mindy, used  Vanessa;  41 III. The  study  anthropological and  and  paradigm which r e l i e s  naturalistic  diabetes  Field  s t u d y and  were employed t o o b t a i n a d e t a i l e d  picture of diabetes  diabetes  p r i m a r i l y on s u b j e c t i v e  c o l l e c t i o n methods.  i n t e r v i e w techniques  Children with  TECHNIQUES  was g r o u n d e d i n t h e i n t e r p r e t i v e  q u a n t i t a t i v e data  clinical  RATIONALE FOR  from a c h i l d ' s  perspective.  were e n c o u r a g e d t o p a r t i c i p a t e i n  management and r e c r e a t i o n a l a c t i v i t i e s w h i l e  by m e d i c a l  and camp s t a f f .  The r e s e a r c h e r  supervised  had v a r i o u s  opportunities  t o o b s e r v e t h e c h i l d r e n o v e r t h e two weeks o f camp  and  to analyze  attempted  g r o u p and i n d i v i d u a l s . doctor  or medical  sessions insight  into  nature  diabetes their  The h e a l t h team ( n u r s e s ,  student)  facilitated  'question  c h i l d r e n ' s ideas  clinical  about  of i n d i v i d u a l  c h i l d r e n ' s knowledge  about  and t o p r o b e t h e i n t e r r e l a t i o n s h i p o f s t r u c t u r e o f  probe s e n t i m e n t s interviews,  The i n t e r v i e w f o r m a t was c h o s e n t o e l i c i t  u n d e r l y i n g expressed  d i s c u s s i o n was i n i t i a t e d  a sensitivity  laden  opinions.  s u b j e c t and During  v i a 'trigger'  t o probe c h i l d r e n ' s c o n c e p t i o n s  r e l a t i o n s h i p s among c o n c e p t i o n s .  and  provided  diabetes.  i n f o r m a t i o n a b o u t a c o m p l e x and e m o t i o n a l l y  provided  and a n s w e r '  i n t e r v i e w p r o c e d u r e was u s e d t o a s c e r t a i n  and e x t e n t  beliefs.  pictures  d i e t i t i a n and  as w e l l ' a s r o l e p l a y s and d i s c u s s i o n s w h i c h  The the  the u n d e r l y i n g dynamics a f f e c t i n g the  q u e s t i o n s and  and p e r c e i v e d  This exploratory  approach  to possible misunderstanding  an a p p r e c i a t i o n o f c h i l d r e n ' s p e r s p e c t i v e s  about  o f concepts diabetes.  42  IV. The  i n v e s t i g a t i o n t o o k p l a c e a t d i a b e t i c camp and  c h i l d r e n ' s homes. and  audio-tape  R e c o r d s w e r e k e p t as f i e l d  recordings  interviews.  At  which guided  the  interview  DATA COLLECTION PROCEDURES  of e d u c a t i o n a l  camp, i m p r e s s i o n s  and  sessions  F o l l o w i n g the  field  study,  c o n s t r u c t s were d e v e l o p e d f o r each r e s e a r c h interview protocol  drawings  and  i n f o r m a t i o n were  d e v e l o p m e n t o f t h e games, r o l e  format.  Phase 1;  notes,  in  plays  gathered and  hypothesized question  and  the  formulated.  At D i a b e t i c Camp  Impressions The  i n v e s t i g a t o r , who  notes from her and  observations  snack times,  blood  was and  glucose  the  camp d i e t i t i a n ,  talks with monitoring  plan  as w e l l as d u r i n g n u t r i t i o n a l  and  meal  insulin educational  a s s e s s m e n t s and  meal  adjustments. The  d i e t i t i a n was had  allotted  two  hour-long  campers ( a f t e r  they  r o l e - p l a y s and  d i s c u s s i o n s d u r i n g these  been d i v i d e d i n t o  uncover d i a b e t i c c h i l d r e n ' s understanding cause, d i a g n o s i s , and  field  children during  a d m i n i s t r a t i o n p e r i o d s ; d u r i n g r e c r e a t i o n a l and activities;  made  eating The  activity related  treatment,  and  periods with  three groups).  Games,  s e s s i o n s were used of concepts,  the  to  the  management o f d i a b e t e s  in  sports  situations. o b j e c t i v e s o f the  were:  to i d e n t i f y  t o d i e t and  dietitian's  first  educational  campers' u n d e r s t a n d i n g  d i a b e t e s ; t o answer q u e s t i o n s  of  concepts  r e l a t e d to  43  d i e t a t camp; t o r e v i e w  diet  campers t o b r i n g f o r w a r d provided i n s i g h t way  into  principles  needed d i e t  and e n c o u r a g e t h e  changes.  This session  c h i l d r e n ' s b e l i e f s about the d i a b e t i c  of eating.  Questions and Answers about Diabetes The  g r o u p was a s k e d  t o e x p l a i n d i a b e t e s t o someone who  knew n o t h i n g a b o u t d i a b e t e s ; t o i d e n t i f y d i a b e t e s - r e l a t e d w o r d s , and e x p l a i n why f o o d s  a r e put i n p a r t i c u l a r  groups (see Appendix Three). teams p l a y e d Nutritional The played  a game c a l l e d  F o l l o w i n g these  'Nutritional  food  choice  explanations,  Pursuit'.  Pursuit Nutritional  P u r s u i t game ( s e e A p p e n d i x T h r e e ) was  by teams u s i n g s e l e c t e d q u e s t i o n s  to identify  ideas  about  t h e d i a b e t i c way o f e a t i n g and c h i l d r e n ' s u n d e r s t a n d i n g o f diabetes-related The with  related Role  second e d u c a t i o n a l a c t i v i t y  the nurses  years,  concepts  and m e d i c a l  staff,  was c o n d u c t e d  a departure  from  jointly previous  t o e m p h a s i z e t h e team a p p r o a c h and f o c u s on k e y p o i n t s to diet,  e x e r c i s e and t h e e m o t i o n a l  p l a y s were u s e d t o e n a b l e  impact  campers t o e x p r e s s  a b o u t d i a b e t e s and prompt d i s c u s s i o n r e g a r d i n g questions and h e a l t h - r e l a t e d  of diabetes. their  ideas  campers'  concerns.  Role P l a y i n g The r o l e elicit  plays ( s e e A p p e n d i x T h r e e ) were d e s i g n e d t o  memories, b e l i e f s ,  feelings,  i s s u e s and p r o b l e m s  related  to the d i a g n o s i n g o f d i a b e t e s , c h i l d r e n ' s u n d e r s t a n d i n g o f  44  principles  of blood glucose  control  and i n t e r p e r s o n a l  relationships. Phase 2:  I n C h i l d r e n ' s Homes  Interview P r o t o c o l The i n t e r v i e w p r o t o c o l ( s e e A p p e n d i x F o u r ) was  developed  as a r e s u l t o f o b s e r v a t i o n s and t h e i n t e r a c t i o n s a t camp. c a t e g o r i e s o f q u e s t i o n s t o be a s k e d identified  consent  out then  was o b t a i n e d b e f o r e i n t e r v i e w s w e r e  parents  and c h i l d r e n w e r e c o n t a c t e d by phone,  f o l l o w i n g camp t o s e t up m e e t i n g s . approximately  The i n t e r v i e w s , e a c h  30 m i n u t e s i n l e n g t h , were s e m i - s t r u c t u r e d  a l l o w i n g the c h i l d r e n In  were b a s e d on words  by t h e c h i l d r e n t o e x p l a i n d i a b e t e s .  Written carried  to express  their  many c a s e s , one o r b o t h  provided a d d i t i o n a l  beliefs.  parents asked  T h i s i n f o r m a t i o n was u s e d t o  s u p p l e m e n t b i o g r a p h i c d a t a on t h e c h i l d .  Each i n t e r v i e w  i n c l u d e d a d e s c r i p t i o n o f the respondent  i n t e r v i e w , as w e l l family.  questions or  i n f o r m a t i o n r e g a r d i n g the c h i l d r e n ' s past  experiences with diabetes.  transcript  The  Events  as t h e a t t i t u d e  and t h e  of the respondent  and  t h a t o c c u r r e d a t home h a v i n g a b e a r i n g on  i n t e r v i e w o b j e c t i v e s i n c l u d i n g unusual language d i f f i c u l t y ,  interruptions,  circumstances,  e t c . were  s u c h as  noted.  Interviews Before  t h e i n t e r v i e w an i n t r o d u c t o r y s t a t e m e n t ( s e e  A p p e n d i x F i v e ) was r e a d  to the c h i l d .  P i c t u r e s were u s e d i n  combination with situations or  her  or  instances.  perception.  and  answers  not  asked  given  to  Each c h i l d  was  The i n t e r v i e w  the  same  protocol of  the  questions'  i n response  exactly  The uncover  'trigger  child's  elicit  responses  asked  protocol  to q u e s t i o n s ;  to  explain  evolved all  to  with  his  probing  c h i l d r e n were  questions.  questions  beliefs  and p i c t u r e s  about  the  was  following  designed  aspects  to  of  diabetes: 1)  Why d i d you get  2)  What i s  3)  How does  4)  What i s  it  like  to  have  low  5)  What i s  it  like  to  have  high blood  6)  Why do you t e s t  your  blood?  7)  Why do you t e s t  your  urine?  8)  What i s  9)  What r u l e s  10)  What do you wonder  11)  What p r o b l e m s do you have  it  like  the  diabetes?  blood  d i a b e t i c way o f do you have  as w e l l  and a n s w e r '  children's  about  about  like?  sports?  because  sessions,  notes  role  well  as  were  r e c o r d e d and t r a n s f o r m e d i n t o  you have  diabetes?  AND ANALYSIS  transcripts  drawings.  sugar?  diabetes?  included: as  sugar?  eating  DATA PROCESSING  collected  conversations, 'question  having  i n s u l i n work?  V. Data  diabetes?  from o b s e r v a t i o n s from  plays  audio-tapes  of  and i n t e r v i e w s  Both i m p l i c i t and e x p l i c i t propositional  format.  and the as beliefs  46  A n a l y s i s of the  t r a n s c r i p t s and  field  n o t e s began w i t h  assumptions t h a t : c h i l d r e n answered h o n e s t l y ; consistent with  personal  the  answers were  m e a n i n g s o f c o n c e p t s and  that children  hold multiple contradictory notions. C h i l d r e n ' s r e s p o n s e s were condensed i n t o verbal  and  formed.  content  The  a n a l y s i s and  researcher  interpretations, c h i l d r e n i n an psychological  attempt to determine and  educational  according  processes  theory,  to avoid  Since  Vee'  p r o c e d u r e s f o r f i n d i n g and  F i g u r e 3) d e v e l o p e d  was  concepts.  Gowin's s t e p s reverse  study  addressed  representing 'Interview  by A u l t , Novak and  d e r i v e d f r o m G o w i n ' s ( 197 9»  u s e d t o i n t e r p r e t and I n the  the  data.  categorizing children's  this  of concept l e a r n i n g not  •Vee' h e u r i s t i c ,  of  sociological,  s i g n i f i c a n c e of the  i n t e r v i e w d a t a w e r e a d o p t e d f r o m the (see  the  expectations  to p r e - e x i s t i n g c r i t e r i a ,  Piaget's developmental stages. with  in  Beliefs  investigator tried  explanations  the  the  by  c a t e g o r i e s were  endeavoured to capture,  b o t h t h e a t t i t u d e s and  Individual Children's The  data-driven  categories  represent  such was  as concerned  by  Piaget's  patterns Vee'  in  technique  Gowin ( 1 9 8 4 ) . 1981)  The  'Knowledge  children's  diabetes  a n a l y s i s of responses w i t h  the  Interview  f o r a n a l y z i n g knowledge c l a i m s  are  "run  in  Vee,  47 COGNITIVE DOMAIN  KNOWLEDGE Key  DOMAIN  Interview  Int erviews Figure  3.  Inferring  conceptual (Adapted  The inferences to  Interview about  logic  Vee p r o v i d e d  obtained  o f t h e 'Vee*  and p r e c i s i o n  (Ault,  individual  statements  were  transformed  principles  pattern  i n events).  analogous  events)  into  ( r u l e s which  and e x p l a n a t o r y  concepts  and e x p l a n a t o r y govern  claims  was used t o  and p r i n c i p l e s . inferred  Descriptive (naming  statements  became  t h i n k i n g or r e f e r t o  I n f e r r e d t h e o r i e s were deemed t o be  t h e o r i e s a t the t h i r d  level  child  the consistency i n  o f knowledge  The h e u r i s t i c  concepts  lead a  o f t h e i n t e r v i e w . The  i n judging  children's descriptive  inferred  inferred  i n the context  1984).  into  and l a b e l i n g  s t u r c t u r e t h a t would  o f meaning i n t h e sample  statements  objects  t h e framework f o r making  was t o a s s i s t  Novak and Gowin,  translate  f r o m A u l t , Novak and Gowin, 1984)  the c o n c e p t u a l  make t h e c l a i m s  function  s t r u c t u r e on t h e I n t e r v i e w V e e .  o f t h e 'Knowledge V e e ' .  4 8 P a t t e r n s of C h i l d r e n ' s B e l i e f s about A 'conceptual 1981)  was  used to r e p r e s e n t  s u p e r i m p o s i n g or aspects  were s o u g h t and highlighted.  and  f o r example, C a t h e r a l l ,  a composite of c h i l d r e n ' s  P l a u s i b l e connections  r e c u r r e n t p a t t e r n s or  of diabetes  diabetes,  t h r e a t of c o m p l i c a t i o n s ,  their  model' u s i n g The  i t s e t i o l o g y , management, f e e l i n g s of c o n t r o l ,  I n t e r p r e t a t i o n s of Medical  and  u s e d t o show c o n g r u e n c i e s  viewpoints Differences pointed  and  discrepancies  i m p l i c a t i o n s for diabetes  between the  c h i l d ' s and  out where e d u c a t i o n a l  t h a t w o u l d be  and  appropriate  the  role  in  future.  biomedical  model  between  education interventions.  biomedical  perspective  i n t e r v e n t i o n s could  to the  the  Knowledge  A c o m p a r i s o n o f the' c h i l d ' s model t o t h e was  terms  included children's  degree of dependence, d e c i s i o n - m a k i n g ,  Children's  explanations  i n t o a framework  c h i l d r e n used to e x p l a i n d i a b e t e s .  beliefs regarding:  affective  and  Dominant themes w e r e c l a s s i f i e d  phenomenological perspective  beliefs,  themes t h a t emerged w e r e  from K l e i n m a n ' s (1978) ' e x p l a n a t o r y  ideas  care,  (see  i n t e r t w i n i n g b o t h c o g n i t i v e and  of d i a b e t e s .  modified  inventory'  Diabetes  be  l e a r n i n g needs o f the  trialled child.  C H A P T E R FOUR F I N D I N G S OF  I. The  THE  INTRODUCTION  f i n d i n g s of t h i s study  the c h i l d ' s model of d i a b e t e s . c h i l d ' s p e r s p e c t i v e was  c o n s t i t u t e an e x p l i c a t i o n of  What diabetes means from a  i d e n t i f i e d from o b s e r v a t i o n s ,  p l a y i n g , d i s c u s s i o n s , drawings and children.  The  STUDY  c o n v e r s a t i o n s with d i a b e t i c  data c o l l e c t e d were based on terms and  c h i l d r e n used, i n a r o l e p l a y i n g context, to a f r i e n d or someone who r e s u l t s of t h i s study of an explanatory Presented 1.  ideas  to e x p l a i n diabetes  knew nothing about d i a b e t e s .  are o r i e n t e d around the f i v e  model e l a b o r a t e d i n t h i s chapter  by Kleinman  The  components  (1978).  are:  I l l u s t r a t i v e analyses of i n d i v i d u a l c h i l d r e n ' s ideas about  d i a b e t e s , u s i n g an 2.  role  'Interview  Vee'  ( a f t e r A u l t et a l , 1984).  An a n a l y s i s of 'patterns of responses*  from  children's  e x p l a n a t i o n s of d i a b e t e s . 3.  A comparison of the c h i l d ' s model of diabetes and  biomedical  II.  the  model.  ANALYSES OF INDIVIDUAL CHILDREN'S CONCEPTS OF DIABETES C h i l d r e n ' s b e l i e f s were i d e n t i f i e d  through  clinical  i n t e r v i e w s which used an open-ended set of questions c o g n i t i v e and  affective  components of d i a b e t e s .  claims were drawn from Interview  Vees (See  addressing  Children's  F i g u r e s 4 and  5).  50 Figure 4. (age  Todd's I n t e r v i e w Vee f o r D i a b e t e s 11, d i a b e t e s s i n c e 2 y e a r s ) Knowledge C l a i m s o f t h e C h i l d  I n f e r r e d P r i n c i p l e s and Concepts Etiology: C a u s e d by e x c e s s sugar  Got  Not  Is or  s u r e o f cause  Course Grief  d i a b e t e s from  t o o much c a n d y .  i t c a t c h y ? How do y o u t u r n d i a b e t i c a r e you j u s t born d i a b e t i c ?  of Sickness response  S a d — i t s a d i s e a s e . F e e l s o r r y , don't want t o be a d i a b e t i c . I t s bad f o r y o u  Stigma Insulin i s essential  K i d s t e a s e . . . t h e n I t e l l them i t s n o t a d i s e a s e . You j u s t have t o t a k e n e e d l e s e v e r y t w i c e a day t o keep alive.  Lead life  You're normal--you don't  a  normal  Happy--a l o t o f t i m e s . running.  get c a v i t i e s . Having  f u n and  Pathophysiology: I n s u l i n i s needed  C e l l s won't l e t s u g a r i n .  Need t o t a k e insulin  I n s u l i n goes i n t o y o u r p a n c r e a s and goes t o y o u r c e l l s t o keep y o u a l i v e . I n s u l i n keeps your sugar l e v e l .  Test blood t o determine glucose level. T a r g e t i s 100 t o 200 mg/100 m i s .  Test  High blood glucose c a u s e d by t o o much s u g a r / n o t enough exercise  I f t e s t h i g h e r - - I had t o o much s u g a r or was t o o l a z y . I should to outside and g e t a l o t o f e x e r c i s e ; d o n ' t e a t jam.  t o s e e how h i g h b l o o d s u g a r i s .  T e s t b e f o r e my n e e d l e - - s h o u l d be i n the m i d d l e - - 2 0 0 o r 100.  5 1 O n s e t o f Symptoms: R e a c t i o n when b l o o d g l u c o s e i s below 100 mg/100 m i s . Shaky Headache Head f e e l s h u n g r y . Hungry.  F e e l d i z z y o r a b i t s h a k y , i t s 92 o r 8 0 — l o w e r t h a n 100. F e e l i n g l i k e I'm g e t t i n g r e a l l y c o l d . F e e l i n g shaky--my l e g s . Head f e e l s l i k e i t s p o u n d i n g and g o i n g around. I t f e e l s h u n g r y , my s t o m a c h , too.  Treat r e a c t i o n with f a s t a c t i n g sugar  Need t o have s o m e t h i n g s w e e t — g r a p e j u i c e or orange j u i c e or candies from Hallowe'en.  Test f o r ketones when g l u c o s e i s h i g h ,  Need t o t e s t  Test u r i n e i n case m e t e r was w r o n g .  Do u r i n e t e s t t o s e e i f t h e g l u c o s e was a l i t t l e b i t w r o n g .  u r i n e i f I'm h i g h .  Treatment: Need t o b a l a n c e food/insulin/ activity.  Balance your playing.  Take eve  Not much f u n b e i n g d i a b e t i c — a l w a y s have t o take n e e d l e s . In my l e g o r b e h i n d . [ A r m s ? ] I'm a l i t t l e b i t too young f o r t h a t [ S t o m a c h ? ] I'm a b i t s c a r e d t h a t i t may h u r t b e c a u s e I'm t i c k l i s h .  insulin  Can't i n j e c t i n arm o r s t o m a c h [not rotating sites]  f o o d and i n s u l i n and  Have t o f o l l o w your d i e t — e v e n when n o t h u n g r y .  You have t o e a t e v e r y t h i n g and sometimes you're r e a l l y f u l l .  D i a b e t i c jam i s poisonous.  S c i e n t i s t s f o u n d o u t t h a t d i a b e t i c jam are k i n d o f poisonous ( f a t t e n i n g ) . So I take v e r y l i g h t jam.  Have p r o t e i n f o o d n o t s u g a r when blood glucose i s high.  When I'm r e a l l y h i g h I j u s t have p e a n u t b u t t e r o r c h e e s e o r jam.  C u r e means no injections/test/ l i m i t e d sweets  C u r e . . . y o u d o n ' t have t o t a k e i n s u l i n . Don't have t h a t much c a n d i e s and sugar. [Test your blood?] Yes.  52 F i g u r e 5.  Cathy's  I n t e r v i e w Vee  (12 y e a r s , d i a b e t e s s i n c e  5)  Knowledge C l a i m s  Inferred Principles and C o n c e p t s  o f the C h i l d  Etiology: Pancreas stopped functioning  Pancreas  stops  working.  Course o f S i c k n e s s Fear  Seared  Grief  Why  Confused  C o n f u s e d — e x p l a i n i n g how you g o t diabetes.  Not  I d o n ' t t h i n k I'm r e a l l y d i f f e r e n t . I d o n ' t e a t candy and I have t o t a k e i n s u l i n . No one e v e r s a i d a n y t h i n g mean. They n e v e r c a l l me names.  different  L o n g l i f e by not s m o k i n g / drinking/ following diet  at f i r s t .  me?  L i v e l o n g by n o t s m o k i n g . Taking care o f what he e a t s . Taking proper medicine. Not d r i n k i n g a w h o l e b u n c h . I know a man who had d i a b e t e s - - h e smoked and he l o s t h i s e y e s i g h t and his kidneys.  Pathophysiology: Test blood f o r glucose Aim f o r 90 t o 120 [mg/100ml]  You t e s t how much s u g a r i s i n y o u r blood. B l o o d t e s t s s h o u l d be 90 t o 1 2 0 — i n the normal range.  You g e t k e t o n e s when y o u ' r e s i c k /  Test u r i n e — k e t o n e s . I ' v e had k e t o n e s when I'm s i c k . T e l l s you you can't  energy Not s u r e what haemoglobin t e s t means  Your h o m o g l o b i n a t t h e c l i n i c m i g h t be high. I'm n o t s u r e why.  53 O n s e t o f Symptoms: R e a c t i o n when weak, d i z z y , shaky, eyes blur, f e e l p i n s and needles.  I f I'm weak, I know I'm l o w . My l e g s g e t r e a l l y weak and I c a n ' t w a l k straight. I have t o h o l d o n t o something. I f e e l wobbly then I j u s t collapse. I f I'm i n t h e 6 0 s o r 7 0 s I j u s t f e e l d i z z y i n my head and my hands s h a k e . I f e e l w i e r e i n s i d e when I'm l o w e r t h a n t h a t and my e y e s g e t a l l blurry. I feel different--like p i n s and n e e d l e s .  Drink j u i c e to treat a reaction (usually before breakfast)  (When I'm h a v i n g a r e a c t i o n , I d r i n k juice. Then I e a t my b r e a k f a s t o r w h a t e v e r and e a t an e x t r a s t a r c h .  F e e l i n g hyper when h i g h .  I f I'm h y p e r , I know I'm h i g h . I s t a r t doing s i l l y s t u f f . I start l a u g h i n g my head o f f .  C a u s e d by t o o much f o o d so e a t l e s s carbohydrate (1/2 s t a r c h ) and e x e r c i s e more  I j u s t c u t down on my f o o d . I f I'm i n the 200s I take o f f h a l f a s t a r c h . I f I'm 200 o r o v e r I s k i p f o r 5 minutes.  Treatment: Take i n s u l i n and avoid c e r t a i n foods  Have t o t a k e n e e d l e s and n o t e a t c e r t a i n f o o d s . We're on a diet.  I n j e c t i n stomach and thighs  G i v e i t i n my s t o m a c h . On t h e f r o n t s o f my l e g s i t h u r t s .  Don't w e i g h and measure food as instructed.  We have t o e a t so much. I t has t o be w e i g h e d and m e a s u r e d . [Do y o u ? ] no  E x e r c i s e , but t r a c k causes reactions.  I p l a y S o f t b a l l and b a s k e t b a l l . Track i t s t o o much f o r me b e c a u s e I a l w a y s g e t l o w a l o t and c a n ' t do t h a t .  C u r e w o u l d be new B c e l l s  Dr.  C u r e w o u l d mean f r e e d o m t o do t r a c k injections.  C u r e d - - I c o u l d do t r a c k . Don't have t o t a k e i n s u l i n w h e r e v e r I go and n o t have r e a c t i o n s .  Tse i s w o r k i n g w i t h  cells  54  III.  PATTERNS OF  RESPONSES FROM CHILDREN WITH DIABETES  T h i s i n v e n t o r y summarizes the children's  beliefs,  illustrated camp and  t r e n d s or s i m i l a r i t i e s  g r o u p e d i n t e r m s o f the e x p l a n a t o r y  of  model,  u s i n g quotes from c o n v e r s a t i o n s w i t h c h i l d r e n  i n their  at  homes.  Etiology: None o f the heard  the  During was  biomedical  responded with  third  their  person,  they  r e c a l l e d what t h e i r  example, M a i r i ,  remember what she said  that Mairi,  diagnosed  thought a t age  d i a b e t e s from a needle.  for  a n t i b o d i e s when h e r thought  they  had  The  d i d you  they  diabetes?"  children  said  younger. parents  diagnosed  g i v e n her d i a b e t e s  she  had  stated  diabetes,  three, said  hospital  s i s t e r was  get  got  c h i l d r e n had  s i x , t o l d her  a l l had  Several children  thought  a t age  and  cause o f d i a b e t e s .  a number o f  when she was  got  Mairi  and  personal b e l i e f s .  c o u l d n ' t remember why  some p a r e n t s For  e x p l a n a t i o n f o r the  t h e i n t e r v i e w s , the q u e s t i o n "Why  posed i n the  they  c h i l d r e n were newly d i a g n o s e d  but  t o them.  she  couldn't  Her  mother  thought  she  t e s t e d the f a m i l y as d i a b e t i c  so she w o u l d be  and the  same. V e r b a l i z e d responses  indicated  "(A) d i s e a s e a f f e c t s your doesn't give i n s u l i n . "  b e l i e f s about  etiology:  p a n c r e a s so t h a t i t  "Your p a n c r e a s s t o p s w o r k i n g sugar"  (Alicia, and  you  (Kyle,  10  can't 10  years) have  years)  55 "It  just  "its  a virus.....it  "eating  Course of  happened—you  too  didn't  has  to  do a n y t h i n g wrong" ( M i n d y , 10 y e a r s and T o d d , 10 y e a r s )  be i n the f a m i l y " ( T y s o n , 11 y e a r s )  much c a n d y "  Siokness/Severitv  (Todd, Brad,  and Type o f  11 y e a r s 9 years)  Sick  and  Role:  Diagnosis All  c h i l d r e n had been  diagnosis.  The m a j o r i t y o f  and f r i g h t e n e d diagnosed the  real  as  of  needles  drama o f for  Disneyland  or that  causing  cure  for  have  time  of  hospital  needles  take  'Nurses'  every  mad  were  illustrated  'parents'  promising to  i n the  sad,  when t h e y  reversals  their  blaming  the and  because  day u n t i l  child  to  the  interviewed  picture  they there  In a d d i t i o n , and s t a y i n g  the  girl  i n the  were is  hospital  commented:  " S h e ' s mad because s h e ' s not g o i n g t o  "She's f e e l i n g diabetic. She  of  she got be l i k e  it. She's t h i n k i n g other k i d s . " (Brad, 9 years)  s o r r y f o r h e r s e l f because t h i n k s i t s bad f o r y o u . ( T o d d , 11  a number o f in  the  she's  hospital  for  what  a  years)  c h i l d r e n remembered seemed  to  'doctors'  diabetes.  Referring  confused  confused  The r o l e  diabetes;  to  the  Campers e n a c t e d  c h i l d r e n were  and w o u l d have  boys  as  buy them a t a p e - r e c o r d e r .  sick  bed,  as w e l l  diabetes.  at  c h i l d r e n remembered b e i n g  having diabetes.  themselves  explained  hospitalized  being like  a  56 months,  for n  I  example:  didn't  know  what  was  going on" (Vanessa,  "I w a s r e a l l y s c a r e d . . . . I six m o n t h s . . . . . . I think a  A current more for  clinic the  and  trend  is  for  home v i s i t s  s t a y e d i n the h o s p i t a l couple of m o n t h s . . . " (Peter, 11 y e a r s )  shortened  in  years)  12  an  hospitalization  attempt  to  reduce  with  the  anxiety  family.  Severity Neither the  the  concepts of  comments  were  role  health,  made  plays  or  illness  regarding  interviews or  disease,  these  directly yet  several  concepts.  "I think I'd be h e a l t h i e r [ t h a n o t h e r I know t h a t . . . I ' m o n a b a s i c diet" (Peter, "I'm a l o t not e a t i n g  addressed  children] 11  years)  h e a l t h i e r than a l o t of other k i d s - a l l the sweet f o o d s they do" ( K r i s t a , 10 y e a r s )  "I d o n ' t l i k e when t h e y c a l l d i a b e t e s a d i s e a s e . A d i s e a s e s o u n d s w o r s e . ' D i s e a s e ' s o r t o f s c a r e s me. I just c a l l it 'diabetes'." (Trevor, 10 y e a r s )  Sickness Role Children that  only  part  want of  think  their  of  life  themselves is  different  as  normal,  because  and  they  diabetes. "Diabetes and You  is  a  disease  They  I come b a c k a n d t e l l t h e m j u s t have to take n e e d l e s  might  tease....  i t s not a d i s e a s e . twice a day". ( T o d d , 10 y e a r s )  believe have  57  All  p a r t i c i p a n t s expressed that having diabetes meant  c e r t a i n r e s t r i c t i o n s to t h e i r d a i l y a c t i v i t i e s . food was  a prominent  The d e n i a l of  concern and a l l c h i l d r e n mentioned  not  being able to eat c e r t a i n foods. I always kept wondering—What What can't I eat?"  can I eat?  n  (Dianne, 12  years)  At camp, ' f e e l i n g s ' were not o f t e n mentioned d e s c r i p t i o n s of d i a b e t e s . idiosyncratic, identify  in  Since the diabetes experience i s  the interwiewer asked  "What i s i t l i k e ? " to  the emotional component of the experience.  indicated  the coping s t y l e s and s t r a t e g i e s used by  Responses different  children. "its it"  not that hard...you  j u s t have to get used to (Mindy, 10 years and Vanessa, 12 years)  C h i l d r e n s a i d they t a l k e d about were newly diagnosed or met  new  diabetes when they were  people.  C h i l d r e n had  been  asked: "How  do your f r i e n d s  take i t ? " (Krista,  10  years)  "Does i t [the needle] hurt? How can you give y o u r s e l f needles? That's g r o s s " (Mindy, 10 years) Several c h i l d r e n commented that they d i d not t a l k diabetes with t h e i r f r i e n d s , or other d i a b e t i c s at camp. our i n t e r v i e w , Linda had been t a l k i n g about not as shy as her mother had i n d i c a t e d . t h i s was  the f i r s t  time her daughter  Before  her family and  Linda's mother  about  was  said  had t a l k e d to anyone  58  about d i a b e t e s .  F o r L i n d a (8 y e a r s o f a g e ) d i a b e t e s meant:  " I t always h u r t s . . . t h e needle Now I c a n ' t do i t on my s t o m a c h any m o r e . . . . I c a n ' t do i t on my l e g s . . . Nobody's e v e r t a l k e d about i t [diabetes].....We f o r g e t about d i a b e t e s and go o u t and have f u n . . . . . I d o n ' t remember when I ' v e h a d a r e a c t i o n n  Several  children alluded  having a chronic condition.  to the stigma attached t o  Children's reluotance to discuss  d i a b e t e s , was e c h o e d d u r i n g g r o u p "I of  don't their  activities:  t e l l my f r i e n d s a b o u t i t . I t s none business" ( S h a r o n , 12 y e a r s )  A common b e l i e f  among f r i e n d s  and s c h o o l mates was t h a t  d i a b e t e s was ' c a t c h y ' o r c o n t a g i o u s . "When t h e y [ c h i l d r e n a t s c h o o l ] t h o u g h t i t was c a t c h y , I f e l t l i k e s h o w i n g them what i t f e l t like. P e o p l e l o o k a t me when t h e y h e a r I have to t a k e n e e d l e s . 'How c o u l d y o u do s o m e t h i n g like that?' I f t h e y l e a r n e d t h e way a d i a b e t i c has t o l i v e , t h e y ' d u n d e r s t a n d a l o t more." ( V a n e s s a , 12 y e a r s ) The  book "You C a n ' t C a t c h D i a b e t e s f r o m  1981) Course  was m e n t i o n e d  by s e v e r a l  a Friend"  (Kipnis,  children.  of Sickness With  regard to having a long l i f e  c h i l d r e n had a s k e d , when "Will  with diabetes,  diagnosed:  I die early?" ( P e t e r , 11 y e a r s ) ( K r i s t a , 10 y e a r s )  Opinions r e g a r d i n g the course  of diabetes included:  59 " J u s t because you have d i a b e t e s doesn't you c a n ' t l i v e t h a t l o n g " (Dianne,  mean y o u 1 2 years)  " I t h i n k I ' d be h e a l t h i e r [ t h a n o t h e r c h i l d r e n ] I know t h a t . . . I ' m o n a b a s i c d i e t " (Peter, 1 1 years) "I'm a l o t h e a l t h i e r t h a n a l o t o f o t h e r k i d s - not e a t i n g a l l t h e sweet foods they do" (Krista, 1 0 years)  Children cure  talked  i n the near "your take  The would  having  a disease  and a n t i c i p a t e d  future.  pancreas stops working shots every day, u n t i l  children  consist  artificial  about  interviewed felt  o f making  pancreas  and you have t o there i s a cure" (Denise, 1 0 years) that a cure  the pancreas  or B c e l l s ,  work,  f o r diabetes  or p u t t i n g  i n an  forinstance:  " I t s sort of a wierd i d e a - - i f they could take B c e l l s o u t o f someone e l s e a n d p u t them i n the d i a b e t i c s . I know i t s o u n d s f u n n y . " (Vanessa, 1 2 years) For indulge and  many  and have  insulin  freedom  injections.  implications reactions,  children  of a cure,  need  to test  a cure  would  mean t h a t t h e y  from  testing,  Some  confusion existed  whether their  they  blood  c o m i n g home  would glucose  still  could  f o r snacks  over the have  or follow  a  "I'd t r y something [food] I'd never t r i e d . I wouldn't e a t a whole l o t of candy. I'd sort of s t i c k t o my d i e t . I c o u l d do t r a c k . I don't have t o take i n s u l i n wherever I go. [Prompt, metering?] I don't know." (Cathy, 1 2 years)  diet.  a  60 Pathophysiology;  E f f e c t s o f Having  Diabetes:  People with diabetes are expected their  blood glucose  levels.  A belief  t o monitor  consistent with health  p r o f e s s i o n a l ' s preoccupation with blood t e s t i n g , and  and c o n t r o l  blood  glucose  g l y c o s y l a t e d h a e m o g l o b i n measurements was: " I t s i n your  blood" (Jessica,  9 years)  Blood Glucose T e s t i n g According t o the l i t e r a t u r e ,  a blood glucose  reading of  80-180 mg/100 ml b e f o r e m e a l s i s a c c e p t a b l e f o r c h i l d r e n . C h i l d r e n ' s i d e a s o f what t h e i r from  blood t e s t s  60-120 (mg/100 m l ) t o 100-200  (mg/dl).  Campers w e r e r e q u i r e d t o t e s t times d a i l y . every  Most c h i l d r e n  blood glucose  four  test  three to four  times  from  f o u r t i m e s a day e v e r y  Testing day t o f o u r  a day t w i c e a f o r t n i g h t . One  marks s a i d time  s a i d they  their  day a t home ( n o t a t noon on s c h o o l d a y s ) .  f r e q u e n c i e s ranged times  s h o u l d be v a r i e d  girl  whose l i t t l e  f i n g e r was p e p p e r e d w i t h  t h a t she d i d h e r b l o o d t e s t s o n one f i n g e r  prick a l l the  because, 'it's  t h e o n l y one w i t h b l o o d i n i t " (Amanda, 9 y e a r s )  C h i l d r e n a t camp, r e t u r n i n g f r o m were o v e r h e a r d investigator  comparing t h e i r  was i n t e r e s t e d  these r e a d i n g s .  the t e s t i n g  blood glucose  station,  readings.  The  i n children's interpretations of  C h i l d r e n w a n t e d t o know e a c h o t h e r ' s  readings  6 1 without  e x p l o r i n g any c a u s e and e f f e c t  interviewed, tell  children  blood  s u g a r was and c o u l d be  t h e amount o f i n s u l i n  t o be g i v e n .  c h i l d r e n i n t e r v i e w e d commented t h a t t h e i r use  t h e meter t o r u l e out a r e a c t i o n .  r e a d i n g s were taken b e f o r e s u s p e c t e d Blood low  glucose  The r e a g e n t  parents asked  i n a drop o f b l o o d .  them t o glucose  r e a c t i o n s were t r e a t e d . ) to distinguish  s t r i p s used f o r  work on t h e p r i n c i p l e o f r e f l e c t a n c e o f l i g h t present  Two  ( A t camp, b l o o d  tests help children  and h i g h r e a d i n g s .  glucose  When  commented t h a t b l o o d t e s t s w e r e a b l e t o  them how h i g h o r l o w t h e i r  used t o determine  relationship.  between  testing  b a s e d on t h e  One comment d u r i n g an  i n t e r v i e w was: " I c a n t e l l by l o o k i n g a t t h e b l o o d on t h e s t i c k . I f i t s l i g h t , I know I ' l l be l o w . I f i t s d a r k , I ' l l be h i g h " . (Linda, 8 years) Health  p r o f e s s i o n a l s b e l i e v e the blood  invaluable f o rmonitoring glycemic seem t o s h a r e that  this  belief.  control.  testing exercise i s  C h i l d r e n d i d not  When i n t e r v i e w e d , c h i l d r e n  commented  t e s t i n g t a k e s a l o t o f t i m e , and i t was a h a s s l e o r  o b l i g a t i o n t h a t t h e y have t o p u t up w i t h , i n o t h e r  words:  " s o m e t i m e s i t bugs me....I g e t up i n t h e m o r n i n g and f e e l so happy and t h i n k a b o u t b r e a k f a s t . And t h e n i t h i t s me--I'm g o i n g t o have t o do my b l o o d and e v e r y t h i n g " ( M i n d y , 10 y e a r s ) "it  t a k e s 20 m i n u t e s ,  b e i n g a good m o r n i n g " ( P e t e r , 11 y e a r s )  " I t takes a l o t o f time I don't c a r e what [amount o f i n s u l i n ] I t a k e " ( T o d d , 11 y e a r s )  6 2 None o f  the  children  to  management.  to  health  normal  This  you  "Eating  Others low,  it?"  right  recognized  not  'control'  glucose  a familiar  high;  testing (which  within  one,  and  the  four this  included:  handle the  not  blood  d i d n ' t know what the word meant i n  Definitions  "Can  was  term was  to l i n k  to d e f i n e  p r o f e s s i o n a l s would mean b l o o d  campers i n t e r v i e w e d  sugars  appeared  C h i l d r e n were a s k e d  range).  context.  interviewed  (Mindy,  10  years)  foods"  ( K y l e , 10  that control  meant k e e p i n g  i n a normal  range or  years)  blood  stable.  One  belief  that: " I t s e a s i e r to be adult"  'in control'  i f you  are  (Peter, Children affect  their  emotions. glucose food,  do  blood  not  seem  glucose,  to a p p r e c i a t e especially  C h i l d r e n were annoyed  readings  insulin  differed  and  from  exercise.  or  an  11  years)  that other  the  impact  s u r p r i s e d when  a n t i c i p a t e d , given  For  factors  of s t r e s s  and  blood the  same  example:  "Sometimes I'm a n n o y e d — I d o n ' t know what I d i d t o g e t h i g h . . . . I c a n ' t f i g u r e out why I'd be h i g h when I a t e my p r o p e r f o o d and e x e r c i s e d at l u n c h and r e c e s s . . . . I t b o t h e r s me ( b e i n g h i g h ) but I c a n ' t r e l l y f e e l a n y t h i n g so I d o n ' t t h i n k about i t " (Mindy, 10 y e a r s ) During thought  the  interviews, children  machine was  reliability  of  the  maintaining  their  wrong,  meter or blood  the  glucose  cited  indicating efficacy  i n s t a n c e s when they of  might  their  w i t h i n a normal  they  doubt  the  routine for  range.  For  example: "The o t h e r m o r n i n g I was 132. T o d a y I was 132. Its c r a z y , I o n l y o n c e i n a w h i l e g e t an e v e n n u m b e r l i k e 200 o r 100. Its pretty hard. ( P e t e r , 11 y e a r s ) 1 1  Some readings,  c h i l d r e n were  while  one  meticulous  about  recording  their  said:  "I always f o r g e t to w r i t e i t i n the book. We do when we p h o n e f o r a n a p p o i n t m e n t [with the d o c t o r ] . " ( M i n d y , 10 y e a r s )  G l y c o s y l a t e d Haemoglobin A laboratory glucose  has  weeks.  This  been  significance  test  test  out  of  was  is  used to  control  alluded  indicate  (over  to  by  300  the  whether  mg/100 m l )  children;  blood in  recent  its  unclear.  "When y o u ' v e a l r e a d y gone and t h e y ' v e t a k e n b l o o d i n some o t h e r k i n d o f c h e c k . I t h i n k I'm a l w a y s o v e r or I h a r d l y e v e r am [ h i g h ] . "  t h e r e [to the clinic] the t u b e . I think its I f o r g e t what i t s c a l l e d . something (Vanessa,  12  years)  with  topic,  Urine (Ketone) T e s t i n g Considerable urine  can  be  tested  blood  monitoring  urine  testing  has  confusion existed for  both  glucose  become t h e  u s e d most  often  to  or  primary detect  this  ketones.1 test  for  ketones  since  Recently glucose  when  with  blood  1 K e t o n e i s a b r e a k d o w n p r o d u c t when f a t , r a t h e r than g l u c o s e i s u s e d f o r e n e r g y , i n d i c a t i n g an i m b a l a n c e o f m e t a b o l i c c o n t r o l U r i n e t e s t i n g i s u s e d as an i n d i c a t o r o f t h e p r e s e n c e o f k e t o n e s  6  n  g l u c o s e r e a d i n g s a r e h i g h ( o v e r 300 mg/100 ml) o r when children are sick. "ketones  Comments f r o m  a r e sugar  i n your  campers i n c l u d e d : urine" (Sara, 8 years)  " k e t o n e s a r e what y o u g e t when y o u c a n ' t use sugar f o r energy" ( G l e n , 12 y e a r s ) "you were w o r k i n g y o u r s e l f i n t o a coma. I t w o n ' t h a p p e n a g a i n i f you e a t r i g h t and have i n s u l i n " (Jane, 9 years) During interviews, they t e s t e d  t h e i r urine f o r ketones; three said  t h e y were s i c k . acid  only four of the twelve c h i l d r e n  said  t h e y t e s t e d when  Two b e l i e v e d t h a t y o u a r e t e s t i n g f o r f a t o r  b u r n e d ; o t h e r s commented: " i t says sugar i s o v e r f l o w i n g i n t o your bladder system—urine" ( V a n e s s a , 12 y e a r s ) "ketones a r e f a t or a c i d . They're i n your k i d n e y " [ d o n ' t know how t h e y g o t t h e r e ] (Brad, 9 years) "when y o u g e t n e g a t i v e . . . . i t s i m p o r t a n t n o t t o be h i g h — o r y o u ' l l g e t k e y s t o n e s - - i s t h a t t h e name? [Prompt: ketones] I t h i n k t h e y ' r e from the f a t you e a t " ( M i n d y , 10 y e a r s ) " ( t e s t ) t o s e e i f t h e g l u c o s e was a l i t t l e b i t wrong" ( T o d d , 11 y e a r s )  pnset  o f Symptoms: A t camp, s t a f f were e x p e c t e d  to detect  children  e x p e r i e n c i n g l o w b l o o d g l u c o s e , commonly c a l l e d reaction'.  Staff  initiated  on-the-spot  determined  the a p p r o p r i a t e a c t i o n  'having a  blood glucose  t e s t i n g and  t o t a k e d e p e n d i n g on t h e d e g r e e  65 of  severity  o f the  hypoglycemia.  A number o f c h i l d r e n t h e y were l o w ,  but  said  they  could t e l l  t h e y were n o t as r e l i a b l e  symptoms o f h i g h b l o o d  intuitively  d e t e c t i n g the  sugar.  " I f you're low, you're o b v i o u s l y not g o i n g t o g i v e y o u r s e l f t o o much [ i n s u l i n ] " ( D i a n n e , 12 y e a r s ) "My mom makes me not h i g h "  do my  b l o o d t o make s u r e (Vanessa,  I'm 12  years)  Hypoglycemia "What's i t l i k e when you attempt  to e l i c i t  a reaction.  The  shaky,  most p r o m i n e n t  shivering.  s i c k n e s s or a stomach ache.  to  get  responses  were t h e f e e l i n g  o v e r or t r i p p i n g ; Other  v i s i o n or t e a r s ; f e e l i n g angry  signalled  posed i n an  metaphors f o r i n t e r p r e t i n g the e x p e r i e n c e  b e i n g d i z z y ; weak, f a l l i n g nervous,  a r e l o w ? " was  also  impressions included blurred  or grouchy;  Others  t h a t t h e y were h u n g r y and  a feeling  b e l i e v e d the  of  symptoms  a f e e l i n g o f p a n i c or  " Y o u ' r e g o i n g t o f a l l o v e r and d i e . Y o u ' r e d i z z y You f e e l weak and c a n ' t r e a l l y m o v e . . . . l i k e a v o l c a n o - - a b i g headaehe--you're s t u c k i n the middle of i t . You're c o l d . Y o u r l e g s s h a k e so much you f e e l t h e y ' r e not t h e r e . . . . . " ( M i n d y , 10 y e a r s ) "you can f e e l y o u r s e l f g o i n g l o w , l i k e you have a t h e r m o m e t e r i n s i d e y o u r s e l f and e v e r y t i m e you l o s e s u g a r you can f e e l i t d r o p i n s i d e y o u . " ( D i a n n e , 12 y e a r s ) head f e e l s l i k e  of  being  food.  "my  of  i t s hungry"  ( D i a n n e , 12 y e a r s Todd, 11 y e a r s )  need  when  "I  kind  Many are, a  who  of  feel  children  they  reaction.  are, One  "later  girl  hear  tell  that  she  having  reaction,  "but  I  can't  Discussions a  fast-acting  quickly.  Most  Parents  and  eat  sugar  the  Most  sugar  her  camp  at  all  children  health when  campers  where  conversations while  they  are  is  had  hear  about  not  they  having  me"  friend  what  times, they  feel  they  that:  centered  said  workers it  tell  best  really  at  that  needles a l l over" (Krista, 10 y e a r s V a n e s s a , 12 y e a r s )  can't  stories  admitted a  and  commented  Another was  pins  commented  or  they  like  (Vanessa,  12  years)  explained  to  people  she s a y s " (Krista, around  since do  the  10  years)  value  reactions  can  not  carry  sugar  children  could  be  needed  anecdotes  to  about  treat their  a  when  of  carrying  occur with  tempted  them. to  reaction. reactions,  example: "When y o u ' r e r i g h t i n t h e m i d d l e o f a s u b j e c t a n d y o u d o n ' t f e e l l i k e g o i n g ' C a n I go o u t o f the classroom for a s e c . ? ' You j u s t w a i t and w a i t . Then i t s g e t t i n g w o r s e r and w o r s e . The p e r s o n s i t t i n g b e s i d e you sees your head drop to the t a b l e a n d , 'I think she's low'. I had (a reaction) i n my d e s k l a s t y e a r . The t e a c h e r r u n s up a n d b a c k a n d s t a r t s s h o v i n g t h i n g s in my m o u t h . A n d I d o n ' t know w h a t ' s g o i n g o n . Then e v e r y b o d y ' s a s k i n g — ' a r e you a l l right?' • are you OK?• ( V a n e s s a , 12 y e a r s )  for  Treating a Reaction: The  almost  unanimous response  b e t t e r " when a r e a c t i o n has rising.  Popular responses  energetic,  was  that " i t f e e l s  been t r e a t e d , and included feeling  blood sugar  stronger  is  and  f o r example:  "... l i k e you were c a r r y i n g s o m e t h i n g r e a l l y heavy and you j u s t t o o k i t o f f " ( M a i r i , 11 "You f e e l better"  like  Superman...you f e e l  years)  a lot  (Cathy,  12  years)  " l i k e the earthquake t u r n e d o f f - l i k e a f a n . . . g r a d u a l l y i t wears o f f " ( T y s o n , 10 y e a r s ) "I start  feeling  better--like  smiling" (Krista,  10  years)  Hyperglycemia C h i l d r e n ' s a s s e s s m e n t s o f what was 150  t o 300  (mg  glucose  "Over 150  per  I call  100  pretty  ml  'high' ranged  blood).  high" (Dianne,  One indicated  girl's  12  i n t e r p r e t a t i o n of high blood  c o n f u s i o n w i t h k e t o s i s and  years) glucose  the Somogyi  "At n i g h t . . . c o u l d have had a r e a c t i o n and n o t known i t . Then j u s t went h i g h . I d o n ' t know why. When I wake up h i g h I p r o b a b l y had a r e a c t i o n i n t h e n i g h t . I t h i n k i t s b e c a u s e you b u r n f a t . " ( M a i r i , 11 In response  effect.  years)  t o t h e q u e s t i o n , "What w o u l d a m o t h e r  t o t h e c h i l d whose b l o o d  from  t e s t s w e r e h i g h ? " , a number o f  say  children too  said  parents  much or not Children  levels  questioned  exercising realized  through e x e r c i s e  they  had been  eating  enough.  the or  whether  need  to  lower  t a k i n g more  their  blood  glucose  insulin.  "I u s u a l l y go out and r u n a r o u n d and p l a y to g e t i t down a b i t " (Brad, 9 years) " I ' m s u p p o s e d to add 1 or 2 o f T o r o n t o ( i n s u l i n ) Mom ( d e c i d e s ) — s h e used t o be a n u r s e . If it was my d e c i s i o n I w o u l d n ' t know what to d o . " ( V a n e s s a , 12 y e a r s ) Several distinguishing overlapped  c h i l d r e n admitted between h i g h  included:  occasional  and low  headache,  difficulty  blood sugar.  stomach  gramps,  grumpy,  high blood  glucose  sick.  A common i n d i c a t o r  of  was  thirst,  as w e l l  sweaty and  of  as  feeling  hot.  " I f I'm r e a l l y t h i r s t y and d o n ' t f e e l a l l t h a t w e l l , I can t e l l I'm g o i n g t o be h i g h . I kind of f e e l heavy" ( K r i s t a , 10 y e a r s ) "When I'm h i g h t e l l where you  I feel are"  so  low......  you  can't  (Mindy, "I f e e l s p a c y - - l i k e y o u ' r e and y o u ' r e r e a l l y g i d d y . "  on top  of  10  "Too much f o o d , growing".  not  enough  a r o u n d on the  12  years)  happen: insulin  or  (Mairi, "When I s i t  years)  a cloud  (Dianne,  When asked why t h i s would  that  being  and f e e l i n g that  Symptoms  you're 11  years)  couch d o i n g n o t h i n g " (Brad, 9 years)  One  of the  t h o u g h t she was  c a m p e r s was  homesick.  c r y i n g and  staff  When q u e s t i o n e d ,  initially  she  admitted  crying  because : "my mom t o l d me t h a t i f my r e a d i n g s w e r e o v e r 300 I w o u l d go b l i n d . . . . . i t s n o t r e a l l y good t o be h i g h i f y o u ' r e h i g h you s h o u l d go e x e r c i s e and t a k e more i n s u l i n . . . ( C r y ) . . w h e n my mom g o t mad b e c a u s e I had a h i g h r e a d i n g . . . (Upset)..because mom g o t mad a t him" ( K r i s t a , 10 y e a r s )  Treatment Diabetes of i n s u l i n  management has  replacement,  been b u i l t on  d i e t and  the  cornerstones  exercise prescriptions.  I n s u l i n Therapy All own  insulin  t h e d i a b e t i c s a t camp w e r e e x p e c t e d injections;  this  g o a l was  achieved  to give by  the  their end  of  each s e s s i o n . C h i l d r e n seemed t o a c c e p t injections, was it  no  but  found  need f o r  needle,  commented t h a t i t h u r t  F e e l i n g s expressed  insulin  t h e p r o c e d u r e an i n c o n v e n i e n c e .  consensus r e g a r d i n g the  hurt, others  the  There  some c h i l d r e n s a i d a b i t , or d i d n ' t  that  hurt.  included:  " I t s s o r t o f l i k e a r o u t i n e . Sometimes i n t h e m o r n i n g you g i v e y o u r s h o t and y o u ' r e a t s c h o o l t r y i n g t o remember i f you d i d o r n o t , y o u ' r e so used to i t Sometimes I'm a t t h e bus s t o p and I f o r g e t i f I ' v e g i v e n my s h o t - - s o I f e e l a r o u n d t o f i n d a p l a c e t h a t h u r t s t o I know I d i d " ( V a n e s s a , 12 y e a r s )  " I h a t e g e t t i n g and d o i n g my i n s u l i n , i t j u s t bugs me. You g e t used t o i t p r e t t y q u i c k l y .. .... I ' d r a t h e r t a k e a p i l l " ( K y l e , 10 y e a r s ) Children injections. sites  tended  t o have p r e f e r r e d  sites for their  Some c h i l d r e n h a d n o t been r o t a t i n g t h e i r  and l i p o d y s t r o p h y  was e v i d e n t ,  as e x p l a i n e d  insulin  injection  by one c h i l d ;  "Now I c a n ' t do i t on my s t o m a c h anymore b e c a u s e my s t o m a c h ' s s t a r t e d t o b u l g e up. We d o n ' t do i t on my l e g anymore b e c a u s e my l e g b u l g e s up and swells" (Linda, 8 years)  One "I'm  boy e x p l a i n e d a little  why he d i d n ' t  inject  b i t young y e t " (Todd,  Camp p o l i c y d i c t a t e d t h a t arms s i n c e  t h e r e was i n s u f f i c i e n t  reviewed  activities  subcutaneous  into  their  f a t (usual i n  t o be e x e r c i s e d .  the schedule of events  t o guide  11 y e a r s )  c h i l d r e n not i n j e c t  younger c h i l d r e n ) ; or over muscles staff  i n t o h i s arms:  The m e d i c a l  t o a n t i c i p a t e upcoming  the s e l e c t i o n of i n j e c t i o n  When shown t h e p i c t u r e o f t h e g i r l  sites.  injecting herself i n  t h e l e g , one boy commented: "The o n l y p r o b l e m i s s h e ' s d o i n g i t i n h e r l e g . T h a t ' s OK i f y o u ' r e g o i n g t o be l a y i n g down a l l day i t s fine. B u t i f y o u ' r e g o i n g t o be r u n n i n g a r o u n d a l l day i t w o r k s q u i c k e r " ( T y s o n , 11 y e a r s )  The instruction health  complexity of i n s u l i n  t h e r a p y h a s been s i m p l i f i e d f o r  and c h i l d r e n ' s i n t e r p r e t a t i o n s d i f f e r  p r o f e s s i o n a l s might  expect.  from  what  One o f  the  campers a s k e d  "If your pancreas why d o n ' t we g i v e  Since  the  something  c h i l d cannot of  a  i s here needles  see  the  counsellor: [ p o i n t i n g t o h i s abdomen] i n the stomach?" (Ricky, 9 years)  pancreas,  the  system  boy knew t h a t  but was  unaware  of  his  pancreas  other  "They say y o u r p a n c r e a s mind i s d e a d — u s e l e s s "  is  was  unable  Confusion interviews,  your  body?"  existed  functions:  sleeping,  I'm  the  action  c h i l d r e n were a s k e d ,  Comments  "I c a n ' t  over  of  "what  years)  insulin.  During  does i n s u l i n do  in  Included:  remember,  Several  children felt  and one  drawing confirmed  In f a c t  i n s u l i n enters  side  the  liver,  produce  sure  11  but  I know" (Krista,  of  to  pancreatic  (Peter,  the  remains  mystery.  Another insulin,  a  that  insulin this  the  belief  portal  bypassing  travelled  the  (See  10  to  years)  the  pancreas  Appendix E i g h t ) .  c i r c u l a t i o n on the  opposite  pancreas.  "The i n s u l i n s t a r t s moving and i t goes i n t o the p a n c r e a s and i t goes i n t o the c e l l " (Brad, 9 years) " I f you h i t a b l o o d v e s s e l , i t works r e a l l y quickly. But i f you d o n ' t i t j u s t goes a l l o v e r the p l a c e and i n t o y o u r b l o o d v e i n s " ( T y s o n , 11 y e a r s ) These  beliefs  pointed  c i r c u l a t i o n were not the  'key'  enter. asked,  that  This  out  that  clear.  opens the  concepts of  Several  'door'  i n t e r p r e t a t i o n was  c h i l d r e n were u n a b l e  the  to  to  'cell'  had l e a r n e d  the  'cell'  so  c o n f i r m e d by one explain  further.  that sugar  and insulin  is  could  drawing.  When  D i a b e t i c Way  of Eating  D i e t i t i a n s at diabetes education  c e n t r e s had p r o v i d e d  f a m i l i e s w i t h g u i d e l i n e s f o r m e a l s and s n a c k s children;  c o p i e s o f c h i l d r e n ' s meal p a t t e r n s were sent w i t h  registration. with  f o r the d i a b e t i c  T h r e e m e a l s and t h r e e s n a c k s  camp  w e r e p r o v i d e d a t camp  amounts o f f o o d i n c r e a s e d i n a n t i c i p a t i o n o f i n c r e a s e d  activity. At camp some c h i l d r e n  commented t h a t t h e y  were n o t  g e t t i n g enough f o o d and were h u n g r y ; o t h e r s c o m p l a i n e d  t h e y had  t o o much t o e a t ; o t h e r s a t e s l o w l y o r r e f u s e d t o e a t what was required. Although interviews,  o n l y one f o o d - r e l a t e d q u e s t i o n was p o s e d i n  ' n o t e a t i n g c e r t a i n f o o d s ' was u s e d i n d e f i n i t i o n s  o f d i a b e t e s ; e a t i n g candy was a p l a u s i b l e much' r e a s o n and  f o r high blood  sugar  cause and ' e a t i n g t o o  readings;  the d e n i a l o f food  l a c k o f c h o i c e a b o u t when and how much t o e a t was a s t a t e d  as a c o n t i n u i n g p r o b l e m o f h a v i n g "Diabetes  means y o u c a n ' t  "Terrible--no  diabetes. eat certain foods" ( C a t h y , 11 y e a r s V a n e s s a , 12 y e a r s Brad, 9 years)  c h o c o l a t e b a r s o r Coke" (Tyson,  11  years)  "Sometimes y o u ' r e r e a l l y h u n g r y and y o u c a n ' t e a t b e c a u s e i t s n o t on y o u r d i e t . . . I ' d p r o b a b l y eat something" ( K y l e , 10 y e a r s ) "Sometimes I g e t l e s s and I want more. Sometimes I g e t a l o t and I d o n ' t want t h a t much" (Brad, 9 years)  73 "You have to really full"  eat  everything  and  sometimes (Todd,  The and  could  majority portion  reference. knew  (From  their  portion  meal  their From  diabetes  the  children foods  forms  role  8  at  6  did  could  plays,  by  but the  sometimes  their  meal  on  parents,  and  and 9  'dietitian'  staff  did  could  for  children  33  2  patterns  not;  25  not.)  emphasized  that  meant:  "you're  on  a  diet" (Katy,  N e s t l e ' s Q u i k , no f r u i t C o c o a - P u f f s , no F r o s t e d pie"  10  'diabetic  way  of  eating'  years)  f o l l - u p s , no D i n g D o n g s , no F l a k e s , no M c D o n a l d ' s a p p l e (Brandy,  The  years)  relied  sometimes,  the  11  camp knew  required,  completed  pattern,  foods,  the  of  you're  was  further  10  years)  explained  during  interviews: " y o u ' r e supposed to [Prompt: Do y o u ? ]  weigh "No"  your  foods" (Cathy,  The interpreted "if one  'control' to  aspects  of  following  the  years)  diet,  were  mean:  you keep needle"  on y o u r  diet,  you  may  have  (Krista, '"  12  to 10  have  only  years)  " i f you sneak a c h o c o l a t e bar once i n a w h i l e a d a y — i t s going to a f f e c t you. You m i g h t have t o h a v e m o r e i n s u l i n a n d e n d up h a v i n g i t all the t i m e . Y o u ' l l be u n h a p p y a n d w i s h I didn't have t h a t " (Mindy, 10 y e a r s ) "A b o y . , i n o u r s c h o o l who h a d d i a b e t e s too, b u t he r e a l l y d i d n ' t t a k e g o o d c a r e o f it. He a t e t o o much j u n k f o o d , he w a s n ' t allowed  could  7 4 too, but he d i d a n y w a y s — p o t a t o c h i p s , normal gum, c h o c o l a t e b a r s . Somebody s a y s t h a t a r o u n d t h e age I am n o t i t s h a r d n o t t o e a t that kind of food. So i f you e a t t h e r i g h t f o o d s now, y o u ' l l be f i n e a f t e r w a r d s . " ( V a n e s s a , 12 y e a r s )  The h e a l t h was sugar  cause  and  expressed  effect relationship  between s u g a r  i n d i f f e r e n t ways.  The  content i n foods  commented  is a difficult  one  concept  and  of  to grasp.  the  One  child  that:  "you c a n ' t e a t s u g a r or candy....we a t e a w h o l e box o f S h r e d d i e s w i t h r a i s i n s . L a t e r we f o u n d o u t t h e y had s u g a r i n them" (Linda, 8 years) Another  belief  about r o l e of sugar  i n t o o t h decay l e d t o  the c o n c l u s i o n : "you won't have  cavities" ( T o d d , 11 y e a r s M i n d y , 10 y e a r s )  Regarding  dietetic  p r o d u c t s , Todd added  " S c i e n t i s t s f o u n d o u t t h a t d i a b e t i c jam-d i e t s t u f f a r e k i n d o f p o i s o n o u s and f a t t e n i n g and e v e r y t h i n g . So I t a k e v e r y l i g h t jam. When I'm r e a l l y h i g h I h a v e p e a n u t b u t t e r or c h e e s e or ham"  Exercise The at  camp:  field  children  participated  i n a wide range  swimming, w a t e r s k i i n g , h i k i n g ,  games.  of  canoeing,  activities running  A number o f p r o g r a m s t a f f were d i a b e t i c s  s e r v e d as r o l e m o d e l s and  encouraged  reluctant  who  campers t o  and  75  participate. An i n t e r e s t i n g  q u e s t i o n p o s e d by one camper was:  "Some p e o p l e c a n swim l o n g e r t h a n o t h e r s e v e n i f t h e y have t h e same s n a c k . Why c a n ' t t h e y swim as l o n g ? " (Jane, 9 years)  The well  effect  understood, "running  o f e x e r c i s e on b l o o d g l u c o s e  a p p e a r e d t o be  f o r example: a l w a y s b r i n g s my s u g a r  down" (Rob, 10 y e a r s )  " F o r s p o r t s , I ' d s a y t h e r e ' s n o t h i n g t o be a f r a i d o f . J u s t go o u t and do l i k e y o u d i d before. I u s u a l l y e a t my n o r m a l s n a c k s and take something along j u s t i n case. When I go swimming o r s k a t i n g i t s j u s t f o o l i n g a r o u n d . . . i t s r e a l l y nothing." ( V a n e s s a , 12 y e a r s )  The identified to  preceding  elicitation  o f c h i l d r e n ' s b e l i e f s has  t h e p e r s o n a l and s o c i a l m e a n i n g t h a t c h i l d r e n  d i a b e t e s , t h e i r e x p e c t a t i o n s a b o u t t h e f u t u r e and t h e i r own  therapeutic goals.  Comparison o f the c h i l d ' s  b i o m e d i c a l model e n a b l e s  the c l i n i c i a n  model w i t h t h e  to identify  d i s c r e p a n c i e s t h a t may cause p r o b l e m s f o r c l i n i c a l Such c o m p a r i s o n s h e l p t h e p r a c t i t i o n e r children his  attach  major management.  to empathize with  who have d i a b e t e s and h e l p h i m d e c i d e w h i c h a s p e c t s o f  explanatory  model t h a t need t o be c l a r i f i e d .  76  IV.  TRANSACTION  BETWEEN THE CHILD/BIOMEDICAL MODELS  T h i s s e c t i o n p r o v i d e s an i n t e r p r e t a t i o n o f c h i l d r e n ' s k n o w l e d g e c l a i m s a b o u t d i a b e t e s and t h e i r clinical  comparison w i t h the  e x p l a n a t a i o n s o f the b i o m e d i c a l model.  are i l l u s t r a t e d  Table I .  using the aspects  The f i n d i n g s  o f the e x p l a n a t o r y  model.  Examples o f C h i l d r e n ' s B e l i e f s I n t e r p r e t e d from t h e C h i l d ' s P e r s p e c t i v e and t h e B i o m e d i c a l M o d e l  Knowledge C l a i m s of C h i l d r e n  Interpretation of Claim  Comparison w i t h B i o m e d i c a l Model  a. E t i o l o g y o f D i a b e t e s ; Pancreas doesn't work/stops  No p r i o r k n o w l e d g e Rote l e a r n i n g o f mechanical breakdown concept  Inappropriate a s s i m i l a t i o n of b i o m e d i c a l concept  Virus/ Catchy/ Contagious/ I t s i n the family/ From a n e e d l e / Too much candy  No p r i o r k n o w l e d g e Due t o e x t e r n a l c a u s e s u c h as v i r u s punishment, or heredity  Oversimplified understanding o f c a u s e and effect relationship  b.  Sweets a r e now restricted since sugar caused the problem  Course o f D i a b e t e s ;  ( i ) At D i a g n o s i s : F e e l sad/mad/ c o n f u s e d and scared of n e e d l e s and hospitals. Feel n o t g o i n g t o be l i k e other k i d s . C a n ' t have s u g a r and e a t t h i n g s .  N a t u r a l t o have feelings of g r i e f , helplessness, fear, f r u s t r a t i o n , of being d i f f e r e n t i n new ' i l l n e s s ' role.  New p r o c e d u r e s and r o l e make t h e c h i l d f e e l d i f f e r e n t from others. The b i o m e d i c a l model s t a t e s that the emotional aspects of diabetes interfere w i t h 'management'.  Knowledge C l a i m s of C h i l d r e n (ii)  Sickness  names  You're j u s t l i k e a normal person I t s d i f f e r e n t when you a r e an a d u l t . I t s not bad, you get used t o i t . I t s not f u n . (iii)  Comparison w i t h B i o m e d i c a l Model  Role  Its a disease/ not a d i s e a s e . D i s e a s e sounds worse. Disease s c a r e s me. J u s t c a l l i t diabetes Tease/call  Interpretation of Claims  Children hold m u l t i p l e and contradi ctory b e l i e f s about disease. Health beliefs include perceptions of severity, barriers to adherence and m o t i v a t i n g factors. Children are r e a l i s t i c and want t o c o n f o r m  C h i l d r e n mention i l l n e s s problems s u c h as f e a r and stigma whereas the b i o m e d i c a l model f o c u s e s on d i s e a s e problems.  Consequences:  Always be t h i n / No c a v i t i e s  H e a l t h and i l l n e s s a r e not a dichotomy. Think o f p o s i t i v e a s p e c t s even i f oversimplified.  Children simplify wellness aspects yet define h e a l t h as more than j u s t the absence o f disease.  I f you're h i g h — y o u can damage y o u r e y e s , and k i d n e y s  Aware o f t h e v a l u e o f c o n t r o l l i n g blood glucose, Reluctant to discuss.  Share b e l i e f in 'control' and p r e v e n t i n g complications  C u r e — o n e dose of i n s u l i n / pills/ artificial pancreas/ B cells  Concerned w i t h the present and b e l i e f t h a t c u r e w i l l be found soon  Children less aware o f t h e value of controlling diabetes u n t i l a cure found.  C u r e means no needles/can 'do' t r a c k o r be a p i l o t . S t i l l have reactions/ watch d i e t /  B e l i e f t h a t cure w i l l mean f r e e d o m f r o m needles, t e s t i n g , d i e t and r e s t r i c t e d l i f e s t y l e . U n c l e a r o f what management w i l l be r e q u i r e d .  Cure f o r diabetes i s i n the experimental stages. Implications uncertain.  You're h e a l t h i e r . T h e r e ' s no r e a s o n a d i a b e t i c can't l i v e a long time.  78 Knowledge C l a i m s of C h i l d r e n  Interpretation of Claim  c. P a t h o p h y s i o l o g y  of  Comparison w i t h B i o m e d i c a l Model  Diabetes:  ( i ) Blood Glucose T e s t i n g : T e l l how h i g h or how much s u g a r i n the b l o o d / t r y to get c e r t a i n range. D e t e r m i n e amount of i n s u l i n to take/ Don't c a r e what amount  U n d e r s t a n d 'snap s h o t p i c t u r e ' but n o t p a t t e r n s or their significance  Share b e l i e f in 'control' through indicators from blood t e s t i n g  Takes t i m e / i s a h a s s l e / f o r g e t to record/and never t a l k about r e a d i n g s  Need t o a p p r e c i a t e the v a l u e of t e s t i n g and d i s c u s s the r e s u l t s .  C h i l d r e n have no reason to value procedures since not d i s c u s s e d .  Don't know why I ' d be h i g h h a v i n g t h e same i n s u l i n , f o o d and e x e r c i s e / A surprise/ The machine i s wrong.  C h i l d r e n don't u n d e r s t a n d when not ' i n c o n t r o l when t h e y f o l l o w e d o r d e r s and d i d n o t 'cheat'. Other f a c t o r s not d i s c l o s e d t o them.  Children question where p r o f e s s i o n a l s have not s h a r e d information (other f a c t o r s ) as p a r t o f education.  Needles from the arm h u r t / D o n ' t know why/Homoglobin might be h i g h  Procedure p a i n f u l and n o t e x p l a i n e d , C h i l d uses wrong term.  Test i n d i c a t e s l e v e l of c o n t r o l , but c o n c e p t n o t c l e a r to c h i l d .  Do i f y o u ' r e h a v i n g a l o t of reactions  Misconception, test reveals r e c e n t h i g h not low l e v e l s  Inappropriate a s s i m i l a t i o n of biomedical concept  (ii)  (iii)  Haemoglobin  1  AlC:  Urine (Ketone) T e s t i n g :  Test f o r sugar i n urine/  C o n f u s i o n between urine testing for s u g a r or u r i n e  Inappropriate a s s i m i l a t i o n of biomedical concept  79 Knowledge C l a i m s of C h i l d r e n  Interpretation of Claim  Comparison w i t h B i o m e d i c a l Model  Ketones are burned f a t / from the f a t you e a t  Rote l e a r n i n g without conceptual understanding  Inappropriate assimilation.  Test ( f o r k e t o n e s ) when sick  d.  Equated w i t h i l l n e s s not the r e a s o n for testing  O n s e t o f Symptoms o f  (i)  Concept u n d e r s t o o d , but not t h e p r i n c i p l e or t h e o r y o f t e s t i n g for ketones  Diabetes:  Hypoglycemia  Weak/Dizzy/Can't move/Nervous/ Shaky l i k e a v o l c a n o or earthquake (ii)  Personal experience and e x p r e s s i o n o f feelings  A f t e r T r e a t i n g the  Feel e n e r g e t i c / l i k e l i k e a b a l l o o n going up/stronger/ Feels b e t t e r / S h a k i n g and a c h i n g go away  Not e x p l a i n e d by b i o m e d i c a l model.  Reaction:  Personal expression of e l a t i o n  No comparison. Not e x p l a i n e d by the b i o m e d i c a l model.  Feel hot/sweaty/ giddy/can't hear when someone's talking  Personal experience  Not  F e e l so l o w / c a n ' t t e l l where I am.  Difficulty distinguishing b e t w e e n h i g h and low.  Advocate t e s t i n g to determine d i f f e r e n c e between low and h i g h .  Had a r e a c t i o n at n i g h t / w e n t h i g h You b u r n f a t  Rote l e a r n i n g o f Somogyi e f f e c t ( r e b o u n d due t o hormonal response)  Good u n d e r s t a n d i n g of b i o m e d i c a l c o n c e p t but n o t the r e a s o n s .  (iii)  Hyperglycemia: explained.  80 Knowledge C l a i m s of C h i l d  (iv)  Interpretation of Claim  Comparison Biomedical  with Model  Assume t h e s e changes w i l l prevent of a m e l i o r a t e the problem. The stress factors not r e a l i z e d .  Understand concept but not p r i n c i p l e s o f a s s e s s i n g cause to d e c i d e on treatment changes. Share b e l i e f that control is possible, without awareness of other f a c t o r s .  A c t i o n t o Take:  Need to e a t l e s s / t a k e a b i t more insulin  e.  Treatment of  (i)  Insulin:  Diabetes:  I n s u l i n i s key to open door to the c e l l so s u g a r can go i n / opens s u g a r box  B e l i e f that i n s u l i n goes t o one c e l l is incorrect.  I n s u l i n goes the p a n c r e a s  U n c e r t a i n of path assume r o u t e i s through pancreas.  Misconception. Pancreas e n t e r s portal circulation.  Works q u i c k e r i f you h i t a b l o o d vessel/in leg (due to e x e r c i s e )  Good u n d e r s t a n d i n g Belief consistent with experience, cognitive understanding  Area of controversy. Insulin action is more r a p i d v i a an e x e r c i s e d muscle  Needle h u r t s / want p a r e n t s to give. Doesn't h u r t . H a s s l e / g e t used to i t / S a w 8 y e a r o l d s c o u l d do i t  Children's coping s t y l e s differ. Some want to be d e p e n d e n t , a c c e p t the need and m o t i v a t e d by o t h e r s  C h i l d r e n expected to g i v e i n j e c t i o n s by age e i g h t . Psychosocial a s p e c t s not addressed.  Rather pill.  Wishful  A l t e r n a t e forms o f insulin delivery being i n v e s t i g a t e d , I n s u l i n destroyed by d i g e s t i o n .  take  to  a  Rote l e a r n i n g without conceptual understanding  Alternate conception  thinking.  81 Knowledge C l a i m s of C h i l d  Interpretation of Claims  Comparison w i t h B i o m e d i c a l Model  Keeps y o u a l i v e / h e l p s y o u be more a c t i v e / G i v e s you energy  Realistic perspective consistent with emotional understanding.  Good u n d e r standing of concepts  Can* t do i t . .. i t bulges/  Children favour injections sites, Changes o c c u r i n subcutaneous f a t with repeated injections i n one a r e a  Advanced concept explained i n personal terms. Reasons f o r r o t a t i n g s i t e s not appreciated  Y o u ' r e on a d i e t / Can't e a t sugar/ E a t t h e same f o o d s / Healthier/No junk food/More food as I get bigger  Aware o f need t o match f o o d i n t a k e w i t h i n s u l i n and need t o l i m i t sweets. Appreciate needs f o r g r o w t h and h e a l t h .  Good c o n c e p t u a l understanding  I f you s n e a k more f o o d s y o u ' l l need more i n s u l i n / I t s n o t good t o t a k e more  R e l a t e the e f f e c t of i n c r e a s e d sugar i n t a k e t o i n s u l i n due t o 'cheating'. H i g h amounts o f i n s u l i n are not recommended.  Understand principles. Theories not disclosed.  R e a l l y hungry/ not a l l o w e d t o e a t more. Can't e a t what I want when I want Friends think I'm a l w a y s eating.  Feelings of r e s t r i c t i o n and l a c k o f c h o i c e as w e l l as being d i f f e r e n t . C h i l d r e n should not go h u n g r y / a d j u s t m e n t s i n treatment r e q u i r e d i f hunger not r e l a t e d hypoglycemia.  Personal aspects included i n biomedi c a l explanations  ( i i ) Way  of Eating:  82  Knowledge C l a i m s of C h i l d (iii)  Interpretation of C h i l d  Comparison w i t h B i o m e d i c a l Model  Exercise:  E a t more b e f o r e s p o r t s / o r i f low, Don't i f h i g h or ' f o o l i n g around'  Aware o f the p r i n c i p l e s of providing extra food f o r e x t r a a c t i v i t y and preventing reactions.  Test d u r i n g tournament  Monitoring during extra a c t i v i t y and stress i s recommended.  Share model  Don't do t r a c k / cross-country skiing  Parti cipation depends on t h e i r knowledge, s k i l l s and a t t i t u d e s . No need t o a v o i d s p o r t s due t o r i s k of hypoglycemia.  A c t i v i t i e s can be undertaken with adjustments i n food or i n s u l i n and monitoring glucose levels  Forget you're d i a b e t i c/have fun  T h e r e i s no h o l i d a y from d i a b e t e s but c h i l d r e n can p a r t i c i p a t e along with others  Stresses compliance with exercise prescriptions; children explained the p s y c h o l o g i c a l benefits  This pointed  out  clinical  biomedical  t r a n s a c t i o n a l a n a l y s i s of e x p l a n a t o r y  models  similarities  two  reality.  practitioner  Good u n d e r s t a n d i n g of b i o m e d i c a l concepts  and  In order  d i s c r e p a n c i e s i n the to reach  needs t o a c t i v e l y  m e d i a t e between the  child  and  a shared  negotiate with  child  T r e n d s emerged f r o m t h i s a n a l y s i s o f c h i l d r e n ' s of d i a b e t e s ,  of  health and  f a m i l y e x p l a n a t i o n s , where they  discrepant.  understanding  views  model, the the  has  are l i s t e d  below:  are  83 1.  Children  concrete eating  appeared  concepts,  to  i.e.  and e x e r c i s e ;  have the  a good  understanding  interrelationship  insulin  injection  of  certain  between  insulin,  and b l o o d g l u c o s e  testing  procedures. 2.  Children's  and c u r e  of  interpretation  diabetes  multifactorial 3.  children's  action,  indicated  testing  explanations  the  role  of  of  and e f f e c t  held  in  simplified  of  of  the  stress  biomedical  the  haemoglobin  seemed unaware or  they  assimilation  glycosylated  Children  cause  the  etiology  rather  than  viewpoints.  Inappropriate  from  of  cause  (HbA1C)  value  of  and o t h e r  of  concepts  was  diabetes,  and u r i n e frequent factors  evident  insulin  testing.  blood  glucose  affecting  these  readings. 4.  C h i l d r e n were r e l u c t a n t  diabetes,  p a r t i c u l a r l y the  and p r e f e r r e d  to  believe  to  discuss  long-term  that  there  certain  effects would  of  aspects having  be a c u r e  in  of diabetes the  near  future. 5.  Personal  model with of  aspects  included: hypoglycemia  diabetes  of  children's  not  feelings  and h y p e r g l y c e m i a ,  treatment  The e d u c a t i o n a l proposed  diabetes  interventions  and c o m p l i a n c e significance will  addressed at  diagnosis;  as w e l l with of  be o u t l i n e d  by the  experiences  the  medical  these in  as  constraints  procedures.  findings  the  biomedical  final  and chapter.  84  CHAPTER FIVE A SUMMARY OF MAJOR FIIDIHGS  I. This the  chapter w i l l  educational  research  into  the of  nature  children's  primary of  participant  children's  the  research  2) children's 3) biomedical The identifying  of  beliefs role  techniques  this  Is  of  the  for  study,  future  diabetes.  study  has  been  about  diabetes,  plays  and i n t e r v i e w s  were d i r e c t e d  to  through  towards  identify the  use  with answering  questions:  How do c h i l d r e n e x p l a i n  diabetes  from a  perspective?  there  concepts  a p a t t e r n of of  responses  illustrating  diabetes?  How do c h i l d r e n ' s  models  of  diabetes  compare  to  the  model? child's  model o f  children's  them i n terms model.  understanding of  observation,  phenomenological  objectives  and r e c o m m e n d a t i o n s  objective  These  1)  the  OBJECTIVES OF THE STUDY  individuals. following  review  implications  II. The  INTRODUCTION  of  the  diabetes  perceptions  of  framework c a l l e d  has  been made e x p l i c i t  diabetes the  by  and o r g a n i z i n g  child's  explanatory  85  III. B a s e d upon t h e concluded  the  presented  i n C h a p t e r F o u r i t can  t h a t c h i l d r e n have t h e i r own  understanding is  data  CONCLUSIONS  case,  of diabetes  concepts  and  health care p r a c t i t i o n e r s  perceptions  and  principles. are faced  Because  explanatory  biomedical  hope t o c o m m u n i c a t e e f f e c t i v e l y .  c h i l d has diabetes  unique l i f e  experiences  i s much more d i f f u s e  proposed h e a l t h care  model o f the  hence h e r  than  the  p l a n i s t o be  p r a c t i t i o n e r must a t t e m p t t o u n d e r s t a n d and  social  context  The identified  o f the  normative provide  and  inferred  model s h o u l d concepts  biomedical  child's beliefs  and  model.  general  p a t t e r n s of  meanings w i t h  beliefs' be  knowledge they  explanatory  congruent with  If a  experiences  children.  of c h i l d r e n ,  elicited  principles  from each  however  an  child.  identified  in this  diverge  study  from  I n t e r v e n t i o n i s r e q u i r e d where  those the  the  plan.  C h i l d r e n i n t e g r a t e t h e i r own  own  of  responses  c o u l d i n t e r f e r e w i t h l e a r n i n g or  n e g o t i a t i o n of a care  formal  model  health  the unique  i n d i c a t e where c h i l d r e n ' s i d e a s c o n v e r g e and of the  Each  model.  the  the  an i n t e r p r e t i v e f r a m e f o r h e a l t h  These c o n s t i t u t e ' t y p i c a l  The  biomedical  and  child.  p r o f e s s i o n a l s to n e g o t i a t e shared  explanatory  child  personal  effective,  this  with  i n t e r p r e t i n g between the model i f t h e y  be  experiences  and  have r e c e i v e d a b o u t d i a b e t e s  models. biomedical  Children's beliefs concepts  the into  seem t o be  r e g a r d i n g how  blood  more their more glucose  8 6  is  affected  by  familiarity  injections,  with  testing  Children's model  where  procedures children of  the had  had  medical  and  not  been  were  health  families).  Inappropriate  was  from  insulin  action,  ketones.  and  Although  unaware  insulin,  food  and  the  diabetes,  for  of  the  activity  negative  children  in  or  biomedical  where  beliefs  of  blood of  their  long-term  were  the  actions  It and  seemed  concepts  diabetes  testing factors  blood  etiology,  r e l u c t a n t to  glucose  discuss  and  procedures, other  consequences  that  their  biomedical of  than  levels.  of  having  possible  .  complications.  IV.  The diabetes  preceding  pointed  appropriate. important 1.  interpretation where  Patterns  Uncover  procedures. for  out  IMPLICATIONS  of  educational  i n responses  the  child's  model  of  i n t e r v e n t i o n might  be  indicated  that  i t is  to:  explanatory  point  EDUCATIONAL  a  model  child's before  Children's  naive  process  by  eliciting  introducing medical concepts  introducing ideas  interpretive  beliefs  should  from start  provide the at  a  concepts  logical  biomedical the  time  and  interpretations  p r o f e s s i o n a l s (or  impact  on  their  glycogylated haemoglobin  well-versed  were  of  their  assimilation  tests  to  discussed.  children's explanations  children  Because  of  from  abstract or  due  procedures.  diverged  more  many  with  activity,  treatment  explained  shared  concepts  evident  and  understanding  concepts  not  food  of  their and  starting  domain.  This  diagnosis,  87  s i n c e y o u n g c h i l d r e n may  feel  they  are being punished  or d i d  s o m e t h i n g w r o n g w h i c h c a u s e d them t o become d i a b e t i c . child's explanatory  model i s n o t  n a i v e b e l i e f s once she  has  heard  elicited  she  Question  their is  b e l i e f s and  children  periodically  discuss their  experiences.  to  discover c h i l d r e n ' s inferences before interventions.  Because  them, s u c h  understanding  proceeding  by r o t e w i t h o u t  the  a key  t h a t opens t h e  what c e l l s a r e .  about the r o u t e i n s u l i n understand  and to  with children understanding  as: "insulin is like to a c e l l "  without  diabetes  i t i s imperative  I n a number o f a r e a s ,  seemed t o have l e a r n e d c o n c e p t s  her  evaluate  a c o m p l e x s u b j e c t e n c o m p a s s i n g numerous c o n c e p t s  educational  admit  belief.  i n order  p r i n c i p l e s q u i t e f o r e i g n to a young c h i l d ,  3.  not  the b i o m e d i c a l e x p l a n a t i o n ; or  choose t o ' f o r g e t ' or d i s c l a i m her o r i g i n a l 2.  may  I f the  concept  C h i l d r e n were not  t a k e s i n the body and of  door  often did  clear not  ketones.  Provide e x p l a n a t i o n s t h a t l e a d to p r o g r e s s i v e  d i f f e r e n t i a t i o n and sense of t h e i r w o r l d  i n t e g r a t i o n s i n c e c h i l d r e n t r y t o make by  c o n s t r u c t i n g concepts.  It is  necessary  t o f o c u s on e l e m e n t s w h i c h p r o v i d e a sound b a s i s f o r f u t u r e learning.  Any  metaphorical on  metaphor s h o u l d  e x p l a n a t a i o n s t o be e f f e c t i v e ,  children's existing  beliefs.  used t o e x p l a i n d i a b e t e s Donnv and  be u s e d j u d i c i o u s l y .  Diabetes)  was  For  (illustrated  they  In  must  example, metaphor i n the  i n t e r p r e t e d by one  order  build commonly  c h i l d r e n ' s book,  child  t o mean:  88  "They say your p a n c r e a s i s s l e e p i n g . sure mine's dead.... u s e l e s s . " The  fact  that  the  pancreas  has  other  I'm  functions  was  not  appreciated. 4.  Help  activities  and  conceptions beliefs. blood  children  the  useful the  not  stress  account In  pejorative  high  discussed  or  included:  readings  'cheating'  and  Other  aspects  and  injection  including  to  of  procedures  as  food  might  well  children's terms  It  care  that  testing  activity,  has  not  but  to  been  have  term  a  Children  high  used  been  because  a  as  'cure'  to  rules  these  had  well  as  the  important of  not  to  the of  case. its  might  topics  or  understand  need  for  be  care  care, the  should  not  explained  that  for  health  and  Explanations  algorithms  been  diabetes  Clinicians  children. or  that  children could  i s also  what  discussed  as  of  provide  contributed  inappropriate  discovery.  procedures  and  'cheating'  urine  a  could  treatment.  i n v e s t i g a t e a l l aspects  f a m i l i e s have and  tests  the  this  principles  without  factors  sites.  such  the  hormonal term  alternate  character.  in  complications,  implications  in  management  biomedical  'snapshot',  insulin,  i s an  of  explained  behind  repeated  when  judgmental  HbA1C  professionals  concepts  other  for  Challenge  changes  i n t e r a c t i o n s of  addition,  that  that  Unfortunately,  for  rotating  i.e. a  planning  and  reasons  children understood  theory  for  realized  readings.  the  c h i l d r e n reasons  monitoring,  comprehending  that  give  instance,  glucose  pattern  understand  t e c h n i c a l procedures.  and  For  to  of  could  assume medical  medical be  applied  89 to  testing  families  5.  become  the  with  their  Children  own f e e l i n g s diabetes,  partners  children's  intellectual  illness.  procedures  effective  Identify  empathize as  and t r e a t m e n t  and i d e a s  to  feel  about  children  feel  themselves i n order  to  cope  feel  process  with  their  unique  Through what  This  stigmatized  their  hyperglycemic  witnessing'  episodes,  for  compliance.  insulin  adjustments  growing c h i l d . the  7. focus belief  are  The onus  disease Promote  the  therapeutic  health value  is  to  is  to  diabetic  fear  health  to  on the  helping  Children  and l e a r n i n g  can  reactions, of  understand  their  medical  meet the  health  children  communication.  reassessments to  for  identity.  professionals  their  they  of  and a n g e r .  be d i f f e r e n t  important  explain concepts  part  well  their  important  diagnosis,  grief,  to  as  chronic  express  biomedical It  constraints  of  procedures  and  meal  and  needs o f  practitioner  plans the  to  treat  illness.  positive  aspects  of  a diabetes  than handicaps.  was more than of  at  necessary  rather  the  to  emotional  an i n t e g r a t e d  Periodic  and the  on a b i l i t i e s that  is  through  the  and t r y  When a s k e d  a positive  of  is  experiences  to  begin  feelings  demands  both  should  enough  education.  attain  coping s t y l e s  child  secure  and do not want  'empathic  the  to  process.  i n understanding a  diabetes.  diabetes  care  C o n s i d e r the  resorted  through diabetes  c h i l d r e n and  perspective  involved  had l e a r n e d  that  the  personal  aspects  c h i l d r e n often  to  in  experiences.  need  could help  exercise  to  the  Children  absence  their  r e g i m e n and  of  expressed  disease  psychological  and  the  the  well-being.  Children's  participation in activities  In  addition,  of  diabetes  being  p u b l i c a w a r e n e s s about needs  'teased'  d i a b e t e s was stigma  out'  contagious.  with  to  diabetes  1.  Suggestions  a larger  and  gender  for  education  differences  environmental 2.  sample  given  beliefs  negotiate  technique,  to  regard  exploratory  toward  perspective of  of  medical  include:  into  children's variables  models;  ages o f  this  directed  comprehension  in children's  interpretive about  onset  u s i n g a number o f  explanatory  interview  diabetes  between e x p l a n a t o r y  'empathic witnessing' child's  are  would q u a n t i f y  different  the  and  and  beliefs such  the  as  age  optimal  time  other  factors.  Developing  children's  that  others  that  illness.  children's  Conducting f u r t h e r research  using  to  in this  about  diminish  and c o n c l u s i o n s  and i m p r o v i n g c h i l d r e n ' s  knowledge.  consequences  FOR FUTURE RESEARCH  recommendations  our u n d e r s t a n d i n g o f  and  talked  to  and h e l p  a chronic  findings  encouraged.  c h i l d r e n thought  important  RECOMMENDATIONS  a number o f  increasing  is  having diabetes  B a s e d upon the study,  It  be  causes  Children  and o t h e r  t h o s e who have  V.  the  be i n c r e a s e d .  or l e f t  attached  empathize  to  should  process  model o f  techniques  and c o u n s e l l i n g models.  could  be used  diabetes.  to  identify  procedures  For example  metaphoric questions  to  or  elicit  an the each  9 1  3.  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S u l w a y , M . , T u p l i n g , H . , W e b b , K. a n d H a r r i s , G. ( 1 9 8 0 ) Techniques for Changing Compliance i n Diabetes." Diabetes Care, 3 ( 1 ) , 108-111. West,  M.  "New  L.H.T. and P i n e s , A . L . ( E d s . ) (1985) C o g n i t i v e Structure and C o n c e p t u a l Change. O r l a n d o , FL: Academic P r e s s , Inc.  W h i t t , J . K . , D y k s t r a , W. a n d T a y l o r , . C . A . ( 1 9 7 7 ) " C h i l d r e n ' s C o n c e p t i o n s o f I l l n e s s and C o g n i t i v e Development." Clinical Pediatrics, 18(6), 327, 331-332, 334-335,  339. Williamson, P . R . and M c C a u l e y , E . ( 1 9 8 4 ) "On B e i n g a Diabetic Patient: A Simulated Experience." Family Systems M e d i c i n e , 2 ( 4 ) , 409-419.  w  1 0 0 APPEHDIX  OHE  GOWIN*S KNOWLEDGE V E E  (Arrows suggest a c t i v e  i n t e r p l a y o f t h e two d o m a i n s )  C O N C E P T U A L DOMAIN  WORLD VIEWS (e.g. nature i s and k n o w a b l e ) PHILOSOPHIES ( e . g . Human Understanding by T o u l m i n ) THEORIES (logically related sets of concepts permitting patterns of reasoning) PRINCIPLES (conceptual rules governing the l i n k i n g of p a t t e r n s i n events, p r o p o s i t i o n a l i n form, d e r i v e d from p r i o r Knowledge C l a i m s CONSTRUCTS, (ideas which support r e l i a b l e t h e o r y but without direct referent i n events or o b j e c t s ) CONCEPTUAL STRUCTURES ( s u b s e t s o f t h e o r y used i n i n q u i r y , concept d e f i n i t i o n s ' pattern statements) CONCEPTS^ ( s i g n s or symbols s i g n i f y i n g r e g u l a r i t i e s i n events and s h a r e d s o c i a l l y )  METHODOLOGICAL FACTUAL  AID DOMAIH  VALUE CLAIMS (the worth, e i t h e r i n out of f i e l d of c l a i m s produced i n an i n q u i r y ) KNOWLEDGE CLAIMS (new g e n e r a l i z a t i o n s i n answer t o t e l l i n g q u e s t i o n s , produced i n the content of inquiry according to explicit criteria) INTERPRETATIONS EXPLANATIONS AND GENERALIZATIONS (product of m e t h o d o l o g y and p r i o r knowledge) RESULTS (representation of the data i n t a b l e s , graphs, charts) ORDERED FACTS ( t r a n s f o r m a t i o n s g o v e r n e d by t h e o r y o r measurement and classification) } FACTS (conclusion that records record events of i n t e r e s t ) RECORDS OF  EVENTS  EVENTS (phenomena o f i n t e r e s t a p p r e h e n d e d t h r o u g h c o n c e p t s and r e c o r d - m a k i n g o c c u r e n c e s , o b j e c t s )  101  APPENDIX L E T T E R OF  TO  PARENTS AND  P A R E N T A L ADD  TWO GUARDIAN  CONSENT  CHILDREN:  We a r e i n t e r e s t e d i n d e v e l o p i n g d i a b e t e s e d u c a t i o n m a t e r i a l s . We b e l i e v e t h a t c h i l d r e n ' s i d e a s can h e l p o t h e r c h i l d r e n and h e a l t h w o r k e r s l e a r n more a b o u t t h e d i a b e t e s e x p e r i e n c e . We a r e t a l k i n g t o y o u n g p e o p l e who have d i a b e t e s and taper e c o r d i n g our c o n v e r s a t i o n s . T a l k i n g to c h i l d r e n alone helps us t o u n d e r s t a n d what i t i s l i k e t o have d i a b e t e s . Below i s a l i s t o f t o p i c s f o r d i s c u s s i o n . I f you have any q u e s t i o n s , p l e a s e f e e l f r e e to ask. If at  a c h i l d d o e s n ' t w a n t t o t a l k o r w i s h e s t o end any p o i n t , t h a t i s h i s or h e r c h o i c e .  the  conversation  Topics f o r d i s c u s s i o n : How o l d were you when you became d i a b e t i c ? T e l l i n g another c h i l d about d i a b e t e s H a v i n g low b l o o d s u g a r ; h a v i n g h i g h b l o o d s u g a r T e s t i n g blood sugar Giving injections Comparisons to other c h i l d r e n w i t h o u t d i a b e t e s The i n f o r m a t i o n c o l l e c t e d w i l l be c o n f i d e n t i a l , b o y s ' and g i r l s ' names w i l l n o t be u s e d . We p l a n t o s h a r e t h e r e s u l t s o f t h i s s t u d y w i t h y o u , and t h a n k you f o r f o r y o u r c o - o p e r a t i o n .  Dr.  Gaalen E r i c k s o n  Deborah Leach  F a c u l t y of Education U n i v e r s i t y of B r i t i s h Columbia  C h i l d ' s name: I consent Parent's  f o r my  child  signature:  to p a r t i c i p a t e  in this  study.  102 APPENDIX  THREE  CAMP Q U E S T I O N S AND AHSWERS ROLE P L A T S C E N A R I O S  LISTS  OF TERMS DSED TO EXPLAIN DIABETES  Session  1  Session  normal insulin pancreas needles testing B cells no c u r e scientific reaction urine diet diabetes mellitus control uncontrolled cheating low b l o o d s u g a r high blood sugar  NUTRITIONAL  insulin needles. diet exereise sugar reaction blood b a l a n c i n g foods high blood sugar low b l o o d s u g a r pancreas IDDM urine control balance hypoglycemia hyperglycemia  PURSUIT  GAME:  How many t e a s p o o n s o f juice?  2.  When you e a t ,  3.  A morning snack i s insulin?  4.  I f you have too much i n s u l i n and not sugar w i l l be....  5.  Carbohydrate i s  6.  Name a f o o d  7.  that  sugar  happens most  are  SAMPLE QUESTIONS  1.  what  there  important i f  a good  i n 4 ounces  to y o u r b l o o d  our main s o u r c e is  2  of  source  I f y o u ' r e g o i n g h i k i n g and c a n ' t t a k e you do t o r e p l a c e one m i l k c h o i c e ?  orange  sugar.  you t a k e enough  energy. of  of  what  food, True  type your  or  of blood  false?  v i t a m i n C. milk  along,  what  should  103  ROLE PLAY SCENARIOS Plav 1 :  Role  "Whv Me?"  The n u r s e diabetic,  with  and f a t h e r .  the  campers as  The s e t t i n g  a r e w o r r i e d because constantly  thirsty  well.  The d o c t o r  nurse  demonstrates  monitoring, diet  has  if  their  Role  i n the  Plav 3:  tells  the  f a m i l y the  insulin injections permits).  afraid about  of  child  has  (preceded  parents is feel  diabetes. by b l o o d  explains  The f a m i l y a s k s  many  The glucose  the  effect  questions,  happen?" and "What can we do?"  as  Know?"  a diabetic  follow  when the  suppposed  sugar  in  d o n ' t want  team w o n ' t  diabetes.  and the  the  mother  and f r i e n d s  friends  to  eat  at  a candy  l e a r n that  candy.  one  child  The d i a b e t i c  diabetes.  "Be a Good S p o r t "  parents the  where  The d i e t i t i a n  A k i d with diabetes His/her  hospital  dietitian,  washroom and d o e s n ' t  and i s n ' t role  doctor,  the  "What do P e o p l e  the  newly-diagnosed  and g o i n g t o  Discussions  explains  nurse,  the  been l o s i n g w e i g h t ,  "Why d i d t h i s  a diabetic  as  has  Campers a c t  is  act  child  time  P l a v 2:  store.  is  on b l o o d g l u c o s e .  including:  Role  or d o c t o r  coach i t  be  to  send  able  to  The d i a b e t i c is  safe  c o a c h and team can p l a n  wants  to  to  the  go on a s o c c e r  child  manage.  child  has  go on the  because  The c o a c h  they knows  to  convince  his  trip  and t h a t  s/he,  ahead and h a n d l e  reactions.  trip. are nothing  parents the  104  A P P E N D I X FOUR DEVELOPMENT OF I N T E R V I E W FORMAT  C h i l d r e n ' s Terms and I d e a s Used To E x p l a i n Diabetes Pancreas stopped  Kleinman's Explanatory Model Category Etiology  Interview Question and P r o b e s  Why does she t h i n k she g o t diabetes ? How she  Picture  Girl i n hospital bed  does feel?  What w o u l d she a s k y o u ? What do y o u remember? Disease  Tease  Course o f sickness/ severity/ type o f sick role  What i s diabetes ?  People with diabe tes  What p r o b l e m s do y o u have because you are diabetic? What do p e o p l e ask y o u a b o u t diabetes?  Girls talking i n a group / o r boy  When w o u l d a diabetic feel like this?  Laughing/ Frowning/ Crying/ Boy w i t h woman over desk  Are t h e r e t h i n g s you wonder a b o u t ?  Child looking up t o mother  Do f r i e n d s with diabetes t h i n k t h e same? Are t h e r e t h i n g s you c a n ' t do? What w o u l d y o u (others) l i k e to l e a r n about diabetes? T h i s man h a s had d i a b e t e s f o r 50 y e a r s , What h a s helped him l i v e that long?  Family looking a t book O l d man drinking tea  What w o u l d a c u r e be? What w o u l d t h a t mean f o r you? Pathophysiology ( E f f e c t s on body)  Why do y o u t e s t your blood?  Blood testing equipment  B e f o r e you t e s t can you t e l l what y o u ' r e g o i n g t o be? What a r e y o u r blood t e s t s s u p p o s e d t o be? What does c o n t r o l mean? What i s t h i s mother s a y i n g to her daughter because her blood t e s t s are high?  Boy writing i n book  Mother and daughter  Urine tests  Low b l o o d sugar Hypoglycemia  Onset o f Symptoms  Do y o u t e s t your u r i n e ? Why? What a r e ketones?  Box o f Ketodiastix  What i s i t l i k e when y o u are low?  Blood glucose monitor  What i s i t l i k e when y o u are h i g h ?  High blood sugar Hyperglycemia  When w o u l d y o u r b l o o d s u g a r be the h i g h e s t ? What i s i n s u l i n doing i n s i d e h e r body?  Boy g i v i n g needle to doll  Diet No s u g a r  T e l l me a b o u t the d i a b e t i c way o f e a t i n g  Boy eating  Birthdays/ Hallowe» en  What do y o u do a t b i r t h d a y  Children at p a r t y  Exercise  What s p o r t s / games do y o u play?  Sports/ kids playing  Insulin Needles  Treatment  Any r u l e s y o u have l e a r n e d about s p o r t s ?  1 07  APPENDIX INTERVIEW  FIVE FORMAT  [To C h i l d : ] We're t r y i n g t o f i n d ways t o h e l p p e o p l e l e a r n more a b o u t diabetes. We t h i n k t h a t c h i l d r e n ' s i d e a s c a n h e l p o t h e r s l e a r n what i t i s l i k e t o have d i a b e t e s . I'm i n t e r e s s t e d i n l e a r n i n g what d i a b e t e s means t o y o u . We c a n t a l k a b o u t d i f f e r e n t t h i n g s t h a t y o u know a b o u t b e c a u s e y o u a r e a diabetic. I have  some p i c t u r e s t h a t I ' d l i k e  y o u t o s e e and t a l k  T h e r e a r e p a p e r and pens i f you'd l i k e ideas.  about.  t o w r i t e o r draw y o u r  I f you d o n ' t want t o t a l k o r want t o s t o p a t any t i m e , to y o u .  i t i s up  I w i l l answer any q u e s t i o n s y o u o r y o u r f a m i l y m i g h t h a v e , we f i n i s h t a l k i n g . It  after  i s OK t o s t a r t ?  What i s y o u r b i r t h d a t e ? How o l d w e r e y o u when y o u became d i a b e t i c ?  PICTURE:  NARRATIVE AND QUESTION  Boy, man and p r e g n a n t woman w i t h d i a b e t e s  A l l t h e s e p e o p l e have d i a b e t e s . Why d i d y o u g e t d i a b e t e s ?  Girl  T h i s g i r l j u s t l e a r n e d she h a s diabetes. You a r e i n t h e h o s p i t a l and s t a r t t a l k i n g t o h e r . She a s k s , "What i s i t l i k e ? You s a y . . . .  i n h o s p i t a l bed  Boy and g i r l s i t t i n g e a t i n g l u n c h i n park  What have p e o p l e s a i d t o y o u a b o u t diabetes? What p r o b l e m s do y o u have y o u have d i a b e t e s ?  because  10 8 PICTURE:  NARRATIVE:  Boy  When w o u l d a d i a b e t i c f e e l  Girl  smiling  Like  this?  Like  this?  Woman l e a n i n g o v e r boy w o r k i n g a t d e s k  Like  this?  Boy g i v i n g i n j e c t i o n to d o l l / Girl giving injection i n her l e g  How does i n s u l i n  Blood t e s t i n g equipment  Why do y o u t e s t y o u r  Boy  frowning crying  like  this?  work?  blood?  B e f o r e you t e s t your blood, can you t e l l what y o u a r e g o i n g t o be? Putting test strip i n blood glucose monitor  What i s i t l i k e sugar? What i s i t l i k e sugar?  Box o f k e t o n e strips  test  t o have l o w b l o o d t o have h i g h  Why do y o u t e s t y o u r  blood  urine?  Woman t a l k i n g t o a young g i r l  What i s t h i s m o t h e r s a y i n g when h e r daughter's blood t e s t i s high?  Boy  What i s t h e d i a b e t i c way o f e a t i n g like?  eating  sandwich  Children playing p a r t y game Children climbing tree G i r l playing tennis Boy s k i i n g Man r u n n i n g Back c a t c h e r Boy  l o o k i n g up a t woman  Family l o o k i n g a t book t o g e t h e r  What do y o u e a t a t b i r t h d a y What r u l e s t o y o u have a b o u t  What do y o u wonder a b o u t  parties? sports?  diabetes?  What do p e o p l e need t o l e a r n diabetes? C o u l d y o u draw a p i c t u r e o f what d i a b e t e s means t o y o u ?  about  109 APPENDIX S I X BIOMEDICAL  1.  MODEL OF  DIABETES  Etiology  THEORY: The c a u s e i s n o t known, b u t f a c t o r s c o n t r i b u t i n g t o i t s d e v e l o p m e n t a r e g e n e t i c and e n v i r o n m e n t a l . PRINCIPLES: HLA ( a n t i b o d y ) t e s t i n g may s c r e e n developing diabetes.  individuals at risk of  A w a r e n e s s o f t h e symptoms o f h y p e r g l y c e m i a may l e a d d e t e c t i o n and d i a g n o s i s . 2.  Course o f S i c k n e s s / S e v e r i t y  and Type o f S i c k  to early  Role  THEORY: Normally the pancreas r e l e a s e s i n s u l i n the blood g l u c o s e r i s e s a f t e r e a t i n g .  i n t o t h e b l o o d s t r e a m when  D i a b e t e s i s a d i s o r d e r i n w h i c h t h e body c a n n o t r e g u l a t e t h e use o f g l u c o s e b e c a u s e o f a s h o r t a g e o f t h e r e g u l a t i n g hormone insulin. I n s u l i n - d e p e n d e n t d i a b e t e s m e l l i t u s (IDDM) i s c h a r a c t e r i z e d by severe i n s u l i n d e f i c i e n c y , with a l i a b i l i t y t o d i a b e t i c ketoacidosis. Without i n s u l i n t o l e t g l u c o s e i n t o the c e l l s o f the body, glucose c o l l e c t s i n the blood supply, l e a d i n g t o : I n c r e a s e d u r i n a t i o n o c c u r s a s t h e body t r i e s s u g a r ; w a t e r i s drawn f r o m t h e t i s s u e s ;  to eliminate  excess  E x c e s s i v e t h i r s t ( p o l y d i p s i a ) d e v e l o p s as t h e body t r i e s t o replace these l o s s e s ; F a t i g u e , w e a k n e s s and w e i g h t l o s s o c c u r b e c a u s e t h e body i s u n a b l e t o u s e o r s t o r e g l u c o s e ; and Appetite  increases  i n an a t t e m p t t o p r o v i d e  t h e body w i t h  more  11 0 food  f o r energy.  Stress i n c r e a s e s blood  glucose.  The e m o t i o n a l i m p a c t o f d i a b e t e s on t h e f a m i l y i n t e r f e r e s w i t h management i n a v a r i e t y o f ways. S t r e s s c a n be: g u i l t o r a n g e r a b o u t become i l l ; f e a r and w o r r y a b o u t d e a t h o r c r i p p l i n g c o m p l i c a t i o n s s u c h as b l i n d n e s s and c a r d i o v a s c u l a r d i s e a s e ; a n x i e t y a b o u t e m b a r a s s i n g and i n c o n v e n i e n t r e a c t i o n s ; d e p r e s s i o n c a u s e d by h y p o g l y c e m i c e p i s o d e s ; 24 h o u r a day s t r u g g l e t o m a i n t a i n n o r m a l b l o o d g l u c o s e i n s p i t e o f an a b n o r m a l m e t a b o l i c s t a t e c o m b i n e d w i t h t h e u s u a l s t r e s s e s c r e a t e d by t h e demands o f living. Most f a m i l i e s need h e l p and u n d e r s t a n d i n g with f e e l i n g s .  t o cope s u c c e s s f u l l y  PRINCIPLES : Prolonged u n c o n t r o l l e d diabetes ketoacidosis. Treatment w i t h  insulin  Symptoms o f d i a b e t e s  (hyperglycemia)  may l e a d t o  i s mandatory.  (high blood  glucose)  c a n be  controlled.  I t i s i m p e r a t i v e t o base a d v i c e on r e a l i s t i c o p t i m i s m and t o c o n v e y s e r i o u s n e s s o f d i a b e t e s w i t h o u t t h r e a t e n i n g and b e i n g counterproductive. S t r e s s r e d u c t i o n t h e r a p i e s can a s s i s t diabetes control. KEY  i n d i v i d u a l s to maintain  CONCEPTS:  C o m p l i c a t i o n s : r e l a t e d to p e r s i s t e n t o r wide f l u c t u a t i o n s i n high blood glucose l e v e l s . a) Short term: k e t o a c i d o s i s . b) L o n g t e r m : t r i o p a t h y o f t h e e y e s , k i d n e y s and n e r v e s due t o a t h i c k e n i n g and n a r r o w i n g o f b l o o d v e s s e l s i n t e r f e r i n g w i t h t h e a b i l i t y t o p r o v i d e o x y g e n a n d n u t r i e n t s , t h o u g h t t o be t h e r e s u l t of sugar or breakdown p r o d u c t s . Ketoacidosis: e x c e s s i v e l e v e l o f a c i d i n the blood accompanied by an i n c r e a s e o f k e t o n e s . A complication of diabetes m e l l i t u s from l a c k o f i n s u l i n . Symptoms i n c l u d e f r u i t y o d o r o f t h e b r e a t h , mental c o n f u s i o n , b r e a t h i n g d i s t r e s s , nausea, v o m i t i n g , d e h y d r a t i o n , w e i g h t l o s s a n d , i f u n t r e a t e d , coma. Ketone:  breakdown p r o d u c t s  that occur  when f a t i s u s e d i n s t e a d  111 of g l u c o s e as f u e l i n m u s c l e s . E x c e s s i v e p r o d u c t i o n of these bodies l e a d s t o t h e i r e x c r e t i o n i n u r i n e . Presence o f ketones i s an i n d i c a t o r o f i m p e n d i n g k e t o a c i d o s i s . K e t o s i s : a n a b n o r m a l a c c u m u l a t i o n o f k e t o n e s i n body t i s s u e s and f l u i d . T h i s c o n d i t i o n o c c u r s i n s t a r v a t i o n . Symptoms a r e k e t o n e s i n u r i n e , l o s s o f p o t a s s i u m i n u r i n e and a f r u i t y o r d o r on t h e breath. U n t r e a t e d , k e t o s i s may p r o g r e s s t o k e t o a c i d o s i s , coma and d e a t h . 3.  E f f e c t s o f Having  Diabetes  BLOOD ( G L U C O S E ) T E S T I N G  THEORY: I n c i d e n c e and s e v e r i t y o f l o n g - t e r m c o m p l i c a t i o n s c a n be r e d u c e d by s t r i c t c o n t r o l o f b l o o d g l u c o s e l e v e l s . Frequent blood glucose d e t e r m i n a t i o n s a r e the b a s i s f o r m o n i t o r i n g d a y - t o - d a y v a r i a t i o n s i n management a n d m a k i n g i n i n s u l i n therapy.  changes  A s s e s s m e n t o f c o n t r o l o f d i a b e t e s depends on d e t e r m i n a t i o n o f b l o o d g l u c o s e l e v e l s i n t e r p r e t e d f o r t i m e o f day and t r e a t m e n t status of the i n d i v i d u a l . A s s e s s m e n t o f c o n t r o l o f d i a b e t e s depends on d e t e r m i n a t i o n o f b l o o d g l u c o s e l e v e l s i n t e r p r e t e d f o r t i m e o f day and t r e a t m e n t status of the i n d i v i d u a l . In d i a b e t i c c h i l d r e n , blood glucose l e v e l s a f t e r meals a r e almost always o u t o f the normal range. PRINCIPLES: B l o o d g l u c o s e l e v e l s b e t w e e n 80-180 mg/dL b e f o r e b r e a k f a s t and supper can g i v e a u s e f u l assessment o f the treatment e f f e c t . T e s t r e s u l t s must be r e c o r d e d and u s e d . D i a b e t i c s s h o u l d l e a r n t o measure c a p i l l a r y b l o o d g l u c o s e l e v e l s , using meticulous technique to obtain c l i n i c a l l y useful r e s u l t s .  1  CONCEPTS : Home B l o o d G l u c o s e M o n i t o r i n g : t e c h n i q u e t h a t measures b l o o d g l u c o s e v a l u e from a c o l o r s t r i p e i t h e r v i s u a l l y or by means o f l i g h t r e f l e c t a n c e meter.  Haemoglobin A 1 C THEORY: Measurement o f the p r o p o r t i o n o f g l y c o s y l a t e d h a e m o g l o b i n i n the b l o o d i s an i n d i c a t o r o f mean b l o o d g l u c o s e l e v e l s f o r a p e r i o d o f s e v e r a l weeks p r e c e d i n g t h e s a m p l i n g .  PRINCIPLE: T h i s measurement i s u s e f u l i n a s s e s s i n g m e t a b o l i c c o n t r o l o v e r 2-3 months s i n c e i t i s not a f f e c t e d by s h o r t - t e r m a d j u s t m e n t s i n G l y c o s y l a t e d h e m o g l o b i n : g l u c o s e f r a c t i o n bound t o c i r c u l a t i n g h e m o g l o b i n i n an a l m o s t i r r e v e r s i b l e p r o c e s s . HbA1c t e s t r e f l e c t s the a v e r a g e b l o o d g l u c o s e o v e r the p a s t few weeks s i n c e r e d b l o o d c e l l s l i v e f o r a p p r o x i m a t e l y 120 d a y s . Blood  glucose  Ideal: Acceptable: Undesirable: Unacceptable: Too Low:  levels  before  meals  and  bedtime:  3.3 to 6.2 mmol/L (60 to 100 mg/100 ml) below 8.3 mmol/L (150 mg/100 ml) 8.3 to 11 mmol/L (150 t o 200 mg/100 ml) above 11.1 mmol/L (200 mg/100 ml) below 3 . 3 mmol/L (60 mg/100 ml)  E l e v a t e d HbA1c i n d i c a t e s e f f e c t i v e or a d h e r e d t o .  the  diabetes  regimen i s  not  being  CONCEPT: Glycosylated i n d i c a t o r of  haemoglobin: a laboratory test metabolic c o n t r o l .  that  provides  an  113  DRIME  (KETONE) TESTING  THEORY: K e t o a c i d o s i s i s c a u s e d by an i n a d e q u a t e s u p p l y o f i n s u l i n w h i c h p r e v e n t s t h e body f r o m u s i n g g l u c o s e f o r e n e r g y . The body b u r n s f a t i n an u n c o n t r o l l e d manner w h i c h r e s u l t s i n a b u i l d u p o f "ketones . n  PRINCIPLE: G l u c o s e u s u a l l y a p p e a r s i n t h e u r i n e when t h e b l o o d g l u c o s e l e v e l s r e a c h e s 10 mmol/L ( 1 8 0 mg/100 m l ) . Test u r i n e f o r k e t o n e s whenever b l o o d g l u c o s e l e v e l ( o v e r 300 mg/dL) a n d / o r i f n o t f e e l i n g w e l l .  i s elevated  CONCEPTS: C o n t r o l : m a i n t a i n i n g b l o o d g l u c o s e w i t h i n a normal range meals. Ketoacidosis: e x c e s s i v e l e v e l o f acid i n the blood by an i n c r e a s e o f k e t o n e s due t o a l a c k o f i n s u l i n .  between  accompanied  K e t o n e : s u b s t a n c e p r o d u c e d i n t h e body t h r o u g h a n o r m a l change f a t s undergo i n the l i v e r . Ketones a r e used as f u e l i n m u s c l e s . E x c e s s i v e p r o d u c t i o n of these bodies leads to t h e i r e x c r e t i o n i n urine. 4. LOW  Onset BLOOD  o f Symptoms GLUCOSE  THEORY: H y p o g l y c e m i a ( i n s u l i n r e a c t i o n o r l o w b l o o d s u g a r ) o c c u r s when t h e r e i s t o o much i n s u l i n o r t o o l i t t l e s u g a r i n t h e b l o o d . Symptoms d e v e l o p r a p i d l y , 1) 2)  w i t h i n 15 m i n u t e s t o one h o u r :  D u l l n e s s , headache, i r r i t a b i l i t y , crying Shaking, sweating, lightheadedness  114 3)  Hunger,  4)  Numbness o f  If  not  change  treated  i n mood or  lips this  or  behavior  tongue,  may p r o g r e s s  pale  skin,  moist  skin  to:  5) Dizziness 6) Loss of c o o r d i n a t i o n , s l u r r e d speech 7) Confusion, unconsciousness. O p t i m a l c o n t r o l may r e s u l t i n symptoms o f to t i m e . Episodes activity only.  weakness,  h y p o g l y c e m i a from  time  r e l a t e d to r e c o g n i z a b l e e v e n t s s u c h as i n c r e a s e d and d e c r e a s e d f o o d i n t a k e i n d i c a t e s y m p t o m a t i c t r e a t m e n t  H y p o g l y c e m i a t h a t i s s e v e r e , r e p e t i t i v e or w i t h o u t o b v i o u s demands the p h y s i c i a n ' s a s s e s s m e n t and u s u a l l y a change i n or i n s u l i n d o s a g e .  cause diet  H y p o g l y c e m i a t h a t i s s e v e r e , r e p e t i t i v e or w i t h o u t o b v i o u s demands the p h y s i c i a n ' s a s s e s s m e n t and u s u a l l y a change i n or i n s u l i n d o s a g e .  cause diet  The s e t p o i n t o f the g l u c o - r e g u l a t o r y system i n the d i a b e t i c h i g h e r t h a n normal c a u s i n g them to e x p e r i e n c e symptoms o f h y p o g l y c e m i a when b l o o d g l u c o s e i s normal or even when above normal.  is  PRINCIPLE: Diabetics  should carry  Wearing i d e n t i f i c a t i o n treatment.  quick  acting  sugar  and i n s t r u c t i o n s  at  all  times.  can a s s i s t  in  symptomatic  CONCEPTS: Normal  blood glucose:  Hypoglycemia:  80-120 mg/100ml 80-180 mg/100ml children  ( 4 . 4 - 6 . 6 mmol/L) ( 4 . 4 - 1 0 mmol/L) f o r  Mild: 50-79 mg/dL S e v e r e : below 50 mg/dL  Q u i c k - a c t i n g sugar: 1/2 g l a s s f r u i t j u i c e or n o n d i e t c a r b o n a t e d b e v e r a g e ; 1 g l a s s m i l k ; 3-4 L i f e s a v e r s or gumdrops; 2 lumps s u g a r ; 2 t s p . s u g a r , honey or j e l l y ; or g l u c o s e concentrate ( D e x t r o s o l t a b l e t s , Glutose tube, Monojel packets)  115  H I G H BLOOD  SDGAH  THEORY: Hyperglycemia  indicates control  i s poor.  Signs of high blood sugar are: excessive urination, w e a k n e s s , f a t i g u e and v i s u a l d i s t u r b a n c e s .  thirst,  F r e q u e n t o r p r o l o n g e d h y p e r g l y c e m i a may a d v e r s e l y a f f e c t b l o o d v e s s e l s and o t h e r body t i s s u e s . The s t r e s s r e s p o n s e c a u s e s i n c r e a s e s i n p l a s m a n o r e p i n e p h r i n e and C o r t i s o l . The and  r e s u l t may be i n o r e a s e d i n s u l i n dosages.  blood sugars  Rage, a g g r e s s i o n and r e b e l l i o n r a i s e the a c t i o n o f a d r e n a l i n .  nerves,  epinephrine,  a t t h e same f o o d  blood glucose  levels  intake due t o  PRINCIPLE: The p e r s o n w i t h d i a b e t e s must l e a r n t o d e t e c t and d e c r e a s e h e r own s t r e s s w i t h r e l a x a t i o n t e c h n i q u e s , a s u p p o r t i v e community, e t c .  h i s or  CONCEPTS: Hyperglycemia:  5.  blood  glucose  l e v e l s above  normal.  Treatment  THEORY: The m a j o r g o a l o f t h e c a r e p l a n i s t o a c h i e v e m e t a b o l i c s t a t e as p o s s i b l e . I n s u l i n r e p l a c e m e n t must be b a l a n c e d amount o f e n e r g y e x p e n d e d .  as normal a  a g a i n s t f o o d i n t a k e and  Management i n c l u d e s r e c o g n i t i o n and t r e a t m e n t  of complications.  116  The a b i l i t y o f t h e f a m i l y t o i n c o r p o r a t e t h e c a r e p l a n i n t o l i f e s t y l e depends on t h e i r a d j u s t m e n t t o t h e d i a g n o s i s and a b i l i t y t o cope w i t h i t s r a m i f i c a t i o n s .  their  The most i m p o r t a n t f a c t o r i n c o m p l i a n c e i s a warm, i n t e r p e r s o n a l r e l a t i o n s h i p w i t h memebers o f t h e h e a l t h c a r e team. F e e l i n g w e l l and o p t i m u m g r o w t h a n d d e v e l o p m e n t a r e b e s t t h r o u g h good c o n t r o l .  achieved  PRINCIPLE: S t r a t e g i e s f o r management o f d i a b e t e s i n v o l v e a p r e s c r i p t i o n f o r i n s u l i n , d i e t and e x e r c i s e a c c o m m o d a t i n g p s y c h o l o g i c a l i s s u e s , s t r e s s and i n t e r c u r r e n t i l l n e s s .  KEY  CONCEPTS:  Control: meals.  maintaining  blood  glucose  w i t h i n a normal  Glucose: animals.  sugar i n the form which c a r b o h y d r a t e  Insulin:  naturally  I  N  g  U  M  N  R  E  P  L  A  C  E  M  E  N  T  range  between  i s a s s i m i l a t e d by  o c c u r r i n g hormone r e l e a s e d by t h e p a n c r e a s .  T  H  E  R  A  P  Y  THEORY: I n s u l i n i s used as a drug w i t h p r e d i c t a b l e e f f e c t s at a g i v e n dose.  and d u r a t i o n  I n s u l i n must be i n j e c t e d s i n c e i t i s d e s t r o y e d by d i g e s t i v e enzymes i f t a k e n by mouth. Treatment w i t h subcutaneous depot i n s u l i n p r o v i d e s i m p e r f e c t c o n t r o l , and b l o o d g l u c o s e l e v e l s may be n o r m a l f o r o n l y b r i e f p e r i o d s d u r i n g t h e day. For a c c e p t a b l e c o n t r o l o f blood g l u c o s e a mixture o f i n t e r m e d i a t e and s h o r t a c t i n g i n s u l i n s t w i c e a day b e f o r e m e a l s i s r e q u i r e d . I n s u l i n i s a b s o r b e d more q u i c k l y f r o m an e x e r c i s e d m u s c l e . Tissue  damage c a n i n t e r f e r e w i t h a b s o r p t i o n o f i n s u l i n .  117  Usual i n s u l i n illness.  dose may be i n a d e q u a t e  during stress,  I n s u l i n a n t a g o n i s t s i n h i b i t the e f f e c t i v e n e s s s i t u a t i o n s w h i c h c a l l them f o r t h a r e :  of  growth  insulin.  or The  Trauma, i n f e c t i o n , i l l n e s s , f e v e r , e x p o s u r e to c o l d and the a c t i o n hormones: g l u c o c o r t i c o i d s ; c a t e c h o l a m i n e s from s t r e s s : e p i n e p h r i n e and n o r e p i n e p h r i n e ; g l u c a g o n : n a t u r a l counteragent p r o d u c e d by the p a n c r e a s ; growth hormone; t h y r o i d hormone.  PRINCIPLES :  I n s u l i n s h o u l d be i n j e c t e d i n t o a r e a s t h a t have a l a y e r o f f a t under the s k i n and a r e f r e e o f l a r g e b l o o d v e s s e l s and n e r v e s . A l l p o s s i b l e s i t e s s h o u l d be u s e d , c h a n g i n g the i n j e c t i o n and l o c a t i n g i n j e c t i o n s a p p r o x i m a t e l y Avoid i n j e c t i n g exercised.  i n s u l i n into  an a r e a o v e r  s i t e f o r each 2 . 5 cm. a p a r t .  a muscle  to  be  CONCEPTS : Lipodystrophy: Stress:  atrophy of subcutaneous f a t pads; more l i k e l y w i t h poor r o t a t i o n o f  any e m o t i o n a l , p h y s i c a l , s o c i a l , e c o n o m i c t h a t r e q u i r e s a r e s p o n s e or c h a n g e .  a side sites.  effect  or o t h e r  factor  Somogyi e f f e c t :  f l u c t u a t i o n s o f b l o o d g l u c o s e betwen h i g h and low w i t h i n one to two h o u r s i n d i c a t i n g the i n s u l i n supply i s g r e a t e r than needs. T h i s c a u s e s the body t o r e l e a s e a d r e n a l i n , g l u c a t o n and c o r t i s o n e to p r o v i d e e x t r a glucose against hypoglycemia. T h i s o f t e n r e s u l t s i n n i g h t time reactions. Dawn Phenomenon:  b l o o d g l u c o s e l e v e l s h i g h e r t h a n n o r m a l i n the e a r l y m o r n i n g ; a r e s u l t of the Somogyi e f f e c t .  WAY OF EATING THEORY: The  body u s e s g l u c o s e  from f o o d  for  energy.  118  Because i n d i v i d u a l s cannot s e c r e t e endogenous i n s u l i n i n response to n u t r i e n t s , f o o d i n t a k e m u s t be c o o r d i n a t e d w i t h e x o g e n o u s insulin. F a i l u r e t o do s o c a u s e s r e c u r r e n t h y p o g l y c e m i a or hyperglycemia. E a t i n g m u s t be p l a n n e d available i n the body. Well-balanced the b l o o d .  regular  according  meals  the  amount  F o o d s h i g h i n s u g a r c o n t e n t n e e d t o be r e s t r i c t e d r a p i d l y r e l e a s e s u g a r i n t o the b l o o d and r e q u i r e i n s u l i n to r e s t o r e balance.  because they l a r g e amounts  of  The p h y s i c i a n and individual needs.  based  are  prescribe  readily  the  insulin  in  Simple carbohydrates hyperglycemia.  control  of  glucose  dietitian  help  to  a meal  absorbed  amount  plan  and  of  on  cause  PRINCIPLES :  C h i l d r e n s h o u l d be e n c o u r a g e d t o m e a l s and 3 b e t w e e n - m e a l s n a c k s .  follow  The k i n d a n d amount o f c a r b o h y d r a t e k e p t c o n s i s t e n t f r o m day t o d a y . Foods high i n sugar content to jellies, s y r u p , p i e and c a k e .  be  in  a meal  a  meal  avoided  plan  or  and  snack  include:  need  3  should  candy,  be  honey,  CONCEPTS :  Glucose  Simple  :  carbohydrates:  Complex  EXERCISE  THEORY:  a f o r m o f b l o o d s u g a r t h a t comes m a i n l y f r o m we e a t . The body u s e s g l u c o s e f o r energy  carbohydrates:  mono  and  disaccharides  polysaccharides  (sugars)  (starches)  the  food  119  E x e r c i s e most l i k e l y a l t e r s t h e r e c e p t i v i t y as w e l l as t h e i r c o n c e n t r a t i o n . Exercise increases glucose u t i l i z a t i o n sugar i n u n t r e a t e d d i a b e t i c s .  and u s u a l l y  H y p o g l y c e m i a can o c c u r d u r i n g , i m m e d i a t e l y following physical activity. During the excitement can be m i s s e d .  and i n t e n s i t y  of i n s u l i n receptors lowers  o r up t o 18  o f the game, e a r l y  E x c e s s i v e e x e r c i s e w i t h o u t a d e q u a t e f o o d may too much, r e s u l t i n g i n h y p o g l y c e m i a .  lower  blood  hours symptoms  blood  sugar  PRINCIPLES:  All  individuals  A friend, treatment Extra  require  a regular  coach or team-mate of hypoglycemia.  schedule  of a c t i v i t y .  s h o u l d know t h e symptoms  f o o d b e f o r e , d u r i n g and/or  after  activity  and  i s recommended.  For s t r e n u o u s a c t i v i t y : E a t 1-2 F r u i t / V e g e t a b l e s C h o i c e s (10-20 grams c a r b o h y d r a t e ) f o r e a c h h a l f hour o f h o c k e y , r u n n i n g , swimming o r t e n n i s . For m o d e r a t e a c t i v i t y : E a t 1 F r u i t / V e g e t a b l e s C h o i c e (10 grams c a r b o h y d r a t e ) f o r each h a l f hour o f a c t i v i t y o r 1 S t a r c h y C h o i c e (15 grams c a r b o h y d r a t e ) f o r each hour o f b r i s k w a l k i n g o r cycling. For l i g h t period—a  activity: Eat 1 Starchy Choice l o n g e r walk or b o w l i n g .  Reducing the i n s u l i n planned ahead.  may  be a u s e f u l  f o r the whole  alternative  exercise  when a c t i v i t y i s  1 20 APPENDIX  SEVEN  E X E M P L A R Y T R A N S C R I P T FROM AD  Subject:  INTERVIEW  V a n e s s a L. 12 y e a r s 11 months  22 J a n u a r y 1986  S=Subject  I=Interviewer  I: We're t r y i n g t o f i n d ways t o h e l p p e o p l e l e a r n more a b o u t diabetes. I ' d l i k e t o t a l k t o y o u and l e a r n t h e s p e c i a l t h i n g s t h a t y o u know a b o u t b e c a u s e y o u a r e a d i a b e t i c . This i s n ' t a test. I h a v e some p i c t u r e s t h a t I ' d l i k e y o u t o see and t a l k a b o u t . T h e r e a r e p a p e r and pens i f y o u ' d l i k e t o w r i t e o r draw y o u r i d e a s . I f y o u d o n ' t want t o t a l k o r want t o s t o p a t any t i m e , i t i s up t o y o u . I ' l l t r y t o a n s w e r any q u e s t i o n s y o u m i g h t h a v e , a f t e r we f i n i s h t a l k i n g . Is  i t O.K. t o s t a r t  (the tape  recorder)?  S:  Yes  I:  What d a t e was y o u r  S:  February  I:  When d i d y o u become d i a b e t i c ?  S:  M a r c h 1 0 , 1983  I: it  birthday?  1 9 , 1973  I ' d l i k e y o u t o t e l l me y o u r l i k e t o be a d i a b e t i c ?  S: A l l that's different food—that's a l l . I:  s t o r y about d i a b e t e s .  i s I take  When y o u h e a r t h e word  What's  s h o t s and e a t d i f f e r e n t  ' d i a b e t e s ' i s t h e r e an image y o u g e t ?  S: No. I g e t e m b a r a s s e d s o m e t i m e s . At s c h o o l , there's another d i a b e t i c i n my c l a s s and we have t o e a t a t s e p a r a t e t i m e s . Our t e a c h e r s a y s - - " t h e y c a n e a t and y o u c a n ' t " and we g e t e m b a r a s s e d . I: Many d i f f e r e n t p e o p l e have d i a b e t e s . This i s a p i c t u r e of a g i r l who j u s t l e a r n e d t h a t she h a s d i a b e t e s and i s g o i n g t o have t o t a k e s h o t s e v e r y d a y . ( L e t ' s s a y ) y o u a r e i n t h e h o s p i t a l and s t a r t t a l k i n g t o h e r b e c a u s e y o u h a v e d i a b e t e s , t o o . She a s k s , "What i s i t l i k e ? " You s a y , " D i a b e t e s i s . . " S: I ' d t e l l them i t s n o t t h a t h a r d , r e a l l y . You j u s t have t o g e t u s e d t o i t and a f t e r y o u do g e t u s e d t o i t , i t s s o r t o f l i k e  121  a routine. Sometimes i n the morning y o u ' r e a t s c h o o l t r y i n g t o remember used to i t . You j u s t g e t u s e d t o i t don't r e a l l y say you're d i f f e r e n t or Nobody r e a l l y bugs you about i t or n afraid of. I:  Tell  me  how  S:  Probably  I:  What w o u l d  she  Do  you  [picture  of g i r l  in hospital  bed]  scared she  S: Y e h ! I f s h e was a s k i f i t h u r t s and I:  feels  you g i v e y o u r s h o t and i f y o u d i d o r n o t y o u ' r e so . A l l your f r i e n d s — t h e y n o t h i n g — y o u ' r e w i t h them. o t h i n g — i t s n o t h i n g t o be  ask  you?  afraid i f she  o f n e e d l e s l i k e I was a t has t o g i v e i t h e r s e l f .  remember what you  thought  before  the  first,  doctor  told  she'd  you?  S: My mom k n e w - - s h e u s e d t o be a n u r s e . W e l l , I d i d n ' t know what i t was. T h e y t o o k my b l o o d a n d t h e n e x t d a y my d a d came t o s c h o o l a n d t o o k me t o t h e h o s p i t a l — I d i d n ' t k n o w w h a t w a s going on. We w e n t t o t h e h o s p i t a l - - I s t i l l d i d n ' t k n o w w h a t was going o n — i t s o r t o f f e l t w i e r d t o be i n t h e h o s p i t a l , b e c a u s e I ' d never been i n the h o s p i t a l b e f o r e . I:  Could  you  imagine  why  they  were  doing  Anything  Do  you  get  else?  S: N o t r e a l l y . ' C u s I w a s i n t h e h o s p i t a l w i t h too. T h e y ' d o n l y b e e n i n t h e r e one d a y , t o o . I:  things?  about 2 hours t o me a l l a b o u t i t .  S: My mom o n t h e way t h e r e — i t t o o k u s t h e r e ( t o C h i l d r e n ' s H o s p i t a l ) she t o l d I:  those  remember  learning  to give a  some o t h e r  girls,  needle?  S: The s e c o n d d a y . I was s c a r e d . I d i d n ' t l i k e n e e d l e s and I s t i l l d o n ' t . S c a r e d and r e a l l y n e r v o u s — t h e n u r s e had t o h e l p a l i t t l e b i t and I was a f r a i d . After that I just d i d i t every day. I:  How  does  me  i t work?  S: I t f l o w s i n t o y o u s y s t e m a n d t h e n i t g o e s up t o y o u r — t h e l a s t t i m e we w e r e t a l k i n g a b o u t t h i s was 2 y e a r s a g o . I t goes i n t o y o u r p a n c r e a s a n d t h e r e ' s no B c e l l s t h e r e . i t works a a s u b s t i t u t e f o r my B c e l l s — t h e s h o t . I t s h e l p i n g me c o n t r o l t h e s u g a r l e v e l i n my b l o o d . I:  The  system?  S: the  T h a t ' s t h e one blood system.  I don't  know—I  can't  remember,  but  i t s not  1 22 I:  Where do y o u l i k e  S:  I  I:  Can you t e l l  t o g i v e your  insulin?  g i v e i t i n my s t o m a c h ; i n my r e a r and i n my l e g s a t n i g h t . me t h e r e a s o n y o u do b l o o d  tests?  S: To s e e how much s u g a r I have i n my b l o o d , t o s e e i f I'm g i v i n g enough i n s u l i n and j u s t t o s e e i f I'm t o o h i g h - - t h e s u g a r i n my b l o o d , and i f I am I c a n b r i n g i t down. I: to  B e f o r e y o u t e s t , c a n you t e l l what y o u r b l o o d be? [ P i c t u r e o f b l o o d t e s t i n g e q u i p m e n t ]  sugar  i s going  S: I c a n t e l l when I m l o w , b u t t h e r e s t o f t h e t i m e I d o n ' t know. S o m e t i m e s I know i f I"m h i g h - - w h i c h I b a r e l y e v e r am. I'm u s u a l l y under 300, h o p e f u l l y . Sometimes I a c t u a l l y c a n , but then i t s j u s t a guess. n  I:  No symptoms?  S: I c a n f e e l when I'm a b o u t u n d e r 1 2 0 — b u t time, I haven't a c l u e . I:  What's t h e l o w e s t y o u ' v e e v e r  S:  31  the r e s t  o f the  been?  I: I know what some p e o p l e l o o k and a c t l i k e when t h e y a r e having a reaction. Some p e o p l e s a y i t f e e l s l i k e h a v i n g an e a r t h q u a k e i n s i d e y o u r body. T e l l me what i t s l i k e f o r y o u when you a r e l o w : " I t s a s i f " S: I g e t a l l s h a k y , my head s o r t o f f e e l s l i k e I g o t a h e a d a c h e — n o t r e a l l y , b u t i t h u r t s a b i t . When I t r y t o w a l k , knees f e e l l i k e t h e y ' r e g o i n g t o f a l l . I:  Why?  S: T r y i n g t o t e l l me I d o n ' t h a v e e n o u g h s u g a r should eat something, I:  i n my b l o o d  and I  What do y o u do a b o u t i t ?  S: F i r s t o f a l l , my mom makes me do my b l o o d t o make s u r e I'm not h i g h . And t h e n a t s c h o o l , I h a v e D e x t r o s o l , c h e e s e and c r a c k e r s and a p p l e j u i c e . And a t home I j u s t d r i n k a p p l e j u i c e or some k i n d o f j u i c e an e a t some c r a c k e r s a f t e r w a r d s . I:  What does i t f e e l  l i k e when y o u b l o o d s u g a r  i s g o i n g up?  S: I t t a k e s a b o u t f i v e m i n u t e s and t h e s h a k i n g goes down and a s my f r i e n d s w o u l d s a y , I g e t a l l h y p e r a g a i n . I:  my  Anything  else?  123  S: J u s t t h e s h a k i n g and a l l t h e a c h i n g goes away. I j u s t f e e l better. My head and my knees ache s o m e t i m e s , n o t a c h e , i t j u s t feels l i k e that. I:  Tell  me what i t s l i k e when y o u b l o o d s u g a r i s h i g h .  " I t s as  S: T h e n I g e t r e a l s h a k y , t o o , b u t I f e e l r e a l h o t and s o m e t i m e s I feel dizzy. T h a t ' s a l l r e a l l y , I ' v e v e r y r a r e l y had t h a t so I d o n ' t know. I:  When w o u l d  y o u b l o o d s u g a r be t h e h i g h e s t ?  S: I t h i n k I was a t a b i r t h d a y p a r t y - - t h i s was when I was a b o u t e l e v e n so I r e a l l y d i d n ' t know. Then a t s u p p e r t i m e , my mom t o l d me t o g i v e more i n s u l i n , I t h i n k . I:  What do y o u do when y o u r b l o o d s u g a r i s h i g h ?  Any  rules?  S: Y e s , i f I remember i t s 5-10-15. No, i t s n o t t h a t one. t h i n k I'm s u p p o s e d t o add one o r two o f T o r o n t o . I:  Who  decides?  S: My mom. She u s e d t o be a n u r s e . w o u l d n ' t know what t o do. I:  I  I f i t was my d e c i s i o n ,  I  When do y o u t e s t ?  S: B e f o r e I go t o s c h o o l , b e f o r e s u p p e r , a t ( e v e n i n g ) s n a c k t i m e and l u n c h t i m e when I m home. I do i t e v e r y 2 d a y s , s k i p a d a y , every 2 days. n  I:  Are your t e s t s  different  on w e e k e n d s ?  S: N o t t h a t much d i f f e r e n c e . t h a n a t home.  I do l o t s more e x e r c i s e  I:  Do y o u change y o u r  S:  No  I;  What a r e y o u r b l o o d t e s t s s u p p o s e d  at school  insulin?  t o be?  S: I u s u a l l y l i k e i t t o be b e t w e e n 80 and 1 8 0 . B u t I l i k e t o be n o r m a l , 120 t o 8 0 . B u t i f i t s o v e r , i t d o e s n ' t m a t t e r s o . My b l o o d u s u a l l y does s t a y u n d e r 2 0 0 , b u t when i t does (go o v e r ) I j u s t g i v e more i n s u l i n . I:  Why  o v e r 200?  S: Maybe I a t e s o m e t h i n g t h a t was t o o s w e e t . made some c o o k i e s and I d i d n ' t know what k i n d  My mom c o u l d h a v e t h e y were and I  124 j u s t g r a b b e d them.  Or I d i d n ' t  do enough e x e r c i s e  t h a t you can't  t h a t day.  I:  Have y o u e v e r had a h i g h  S: ate  I ' v e had t h a t a few t i m e s and I k i n d o f f i g u r e d o u t I maybe t o o much o r s o m e t h i n g o r I was j u s t l a z i n g a r o u n d t h e h o u s e .  I:  Do y o u t a l k  S:  Yeh  I:  Who?  S:  My mom u s u a l l y  I;  Do y o u g e t f e e d b a c k a t t h e c l i n i c ?  t o anyone a b o u t y o u r b l o o d  looks  explain?  tests?  a t them.  S: N o t r e a l l y , t h e y j u s t phone b a c k and t e l l y o u what t h e b l o o d is. When y o u ' v e a l r e a d y gone t h e r e and t h e y ' v e t a k e n t h e b l o o d i n the tubes. I t h i n k some o t h e r k i n d o f c h e c k . I f o r g e t what its called. I:  H e m o g l o b i n A1C?  S: Y e s , t h a t ' s what i t i s . something.  I t h i n k I'm a l w a y s o v e r o r  I: Can y o u t e l l me what y o u t h i n k t h i s m o t h e r i s s a y i n g d a u g h t e r , because h e r blood t e s t s were h i g h ? S:  No, I  I:  I s there  t o her  couldn't anything  y o u do i f y o u r s u g a r i s o v e r  300?  S: I t e s t f o r k e t o n e s . I d o n ' t t h i n k I ' v e e v e r had t h o s e a t home. A l l I do i s i n c r e a s e my i n s u l i n o r go o u t s i d e f o r a w h i l e , h o p i n g t h e b l o o d w i l l go down. I u s u a l l y r u n a r o u n d t h e b l o c k a c o u p l e o f t i m e s o r go b i k e r i d i n g o r I j u s t s t a r t d a n c i n g . I:  What does i t t e l l  you?  S: I t s a y s s u g a r i s o v e r f l o w i n g i n t o y o u r b l a d d e r u r i n e — I t h i n k t h a t ' s t h e way i t w e n t . I:  system--  What w o u l d y o u s a y a b o u t t h e d i a b e t i c way o f e a t i n g ?  S: A s k my d a d t h a t - - h e s a y s I e a t t o o f a s t . When I'm l o w , I e a t r e a l f a s t and when I'm h i g h I e a t s l o w l y and my dad l o o k s a t me b e c a u s e he knows I'm a f a s t e a t e r u s u a l l y I f i n i s h r e a l f a s t and the r e s t o f the f a m i l y i s s i t t i n g around t h e t a b l e e a t i n g , i t s a l s o b e c a u s e I d o n ' t g e t a much as t h e y do. I: Not  At p a r t i e s or restaurants i s i t d i f f i c u l t being a d i a b e t i c ? r e a l l y , i f t h e o r d e r ' s t o o b i g , my mom j u s t o r d e r s me s i d e  125  o r d e r s o r she j u s t I:  g i v e s me some o f h e r s .  What's y o u r b e s t  s p o r t o r game?  S: A t s c h o o l , a t r e c e s s , we have t o r u n a m i l e e v e r y d a y ; l u n c h we p l a y b a s e b a l l , ( s t r e e t ) h o c k e y , and s o c c e r . I l i k e to skate and t o swim. F o o t b a l l , b a s k e t b a l l , I l i k e almost a l l s p o r t s . I:  Do y o u t e s t  before  and a f t e r  sports?  S: Y e s . Not when I'm t h e r e , b u t when I come home, u s u a l l y I'm a l o t lower. Grade 7 h a s c o m p e t i t i o n . I got p i c k e d f o r a hockey t o u r n a m e n t so I'm g o i n g i n t h a t f o r 6 h o u r s . S o c c e r team i n November, b a s e b a l l i n A p r i l , we go i n c r o s s - c o u n t r y , t r a c k and f i e l d and r e l a y s . My f r i e n d a t s c h o o l , she n e v e r t r u s t s h e r s e l f t o r u n c r o s s c o u n t r y and when I came l a s t y e a r and I w e n t i n c r o s s c o u n t r y and she d i d n ' t a l l t h e o t h e r k i d s a s k e d . Kim was a l w a y s a f r a i d o f g e t t i n g l o w . And I t h i n k i t g o t t o h e r head t h a t i f s h e ' d g o i n g t o g e t l o w she w o n ' t do i t , b u t now s h e d o e s e v e r y t h i n g b e c a u s e I came. They c o u l d s e e t h a t w e ' r e two t o t a l l y d i f f e r e n t d i a b e t i c s . When I went t o b i r t h d a y p a r t i e s , she g o t more ( f o o d ) t h a n I d i d so t h e y t h o u g h t s o m e t h i n g i s w r o n g , l i k e Kim's e a t i n g t o o much, right? They c o u l d a l w a y s t e l l t h e d i f f e r e n c e . They s a i d i f I h a d n ' t t o l d them t h e y w o u l d n ' t know I was d i a b e t i c b e c a u s e I was a l w a y s i n t e r e s t e d i n s p o r t s and I a l w a y s d i d them and r a n t h e c r o s s c o u n t r y and t r a c k and f i e l d . A b o u t a r u l e f o r s p o r t s , I ' d s a y t h e r e ' s n o t h i n g t o be a f r a i d of. J u s t go o u t and do l i k e y o u d i d b e f o r e , I u s u a l l y e a t my n o r m a l s n a c k and t a k e s o m e t h i n g a l o n g j u s t i n c a s e . When I go swimming o r s k a t i n g , i t s j u s t f o o l i n g a r o u n d and i t s r e a l l y nothing. When I go t o c o m p e t i t i o n , I b r i n g s u p p e r a l o n g and I b r i n g e x t r a f o o d — a p p l e j u i c e , c h e e s e and c r a c k e r s . My mom s o m e t i m e s g i v e s me f r u i t r o l l - u p . I t a k e maybe s h e ' d g i v e me some candy j u s t i n c a s e . I: Can you t e l l me some t h i n g s f r i e n d s have s a i d d i a b e t e s or q u e s t i o n s they've asked?  about  S: T h e y d i d n ' t r e a l l y a s k me a n y t h i n g . L i k e a t b i r t h d a y p a r t i e s I h a d t o b r i n g my l i t t l e c o m p u t e r a l o n g and t h e y j u s t a s k e d me how i t w o r k e d and i f i t h u r t when I t o o k t h e t h i n g . Then one o f them was b r a v e enough t o t r y i t and now t h e y a l l know i t d o e s n ' t h u r t t h a t much. T h a t ' s a b o u t t h e o n l y q u e s t i o n t h e y e v e r a s k e d me. I:  Can you t h i n k o f t i m e s  its difficult  being a d i a b e t i c ?  S: When I f i r s t f o u n d o u t my f r i e n d s d i d n ' t u n d e r s t a n d and t h e y a c t e d w i e r d a r o u n d me. They t h o u g h t maybe i t w o u l d be c a t c h y o r s o m e t h i n g so t h e y s t a y e d away. Then I g u e s s my t e a c h e r g o t mad and s t r a i g h t e n e d them o u t . T h a t was a b o u t t h e o n l y t i m e . S o m e t i m e s when I go t o b i r t h d a y p a r t i e s and t h e r e ' s s u c h good f o o d a r o u n d and I know I'm n o t a l l o w e d t o have i t . I t s sort of  126 hard  then.  I:  Do  any  o f y o u r f r i e n d s have  S:  J u s t the  I: you  Do y o u r o t h e r do?  ones a t  diabetes?  camp.  friends with  diabetes  t h i n k the  same way  that  S: T h e r e was a boy t h a t was i n o u r s c h o o l who had d i a b e t e s t o o , b u t he r e a l l y d i d n ' t t a k e a g o o d c a r e o f i t . He a t e t o o much j u n k f o o d — h e w a s n ' t a l l o w e d t o , but he d i d a n y w a y s - - p o t a t o c h i p s , n o r m a l gum, c h o c o l a t e b a r s . Somebody s a y s t h a t a r o u n d t h e age I am now i t s h a r d n o t t o e a t t h a t k i n d o f f o o d . So i f you e a t t h e r i g h t f o o d s now, y o u ' l l be f i n e a f t e r w a r d s . But, I can't remember where i t was t h e y s a i d i f I w a t c h e d what I a t e a t t h i s age and a l i t t l e b i t o l d e r , t h a t I c o u l d go b . . . . i t c o u l d a f f e c t my s i g h t and s t u f f l i k e t h a t . They t o l d him and I d o n ' t t h i n k he e a t s l i k e t h a t anymore. They s a i d i t was t h e age. I:  Are  you  ever  S: I know I'm room. I:  tempted?  not  s u p p o s e d t o , so I push i t a s i d e  Can you t e l l me [ P i c t u r e o f boy  when a d i a b e t i c w o u l d f e e l smiling]  S: He's somewhere w i t h h i s f r i e n d s , h a v i n g and he's happy he c o u l d go w i t h them. [ P i c t u r e of g i r l  and  leave  like  this?  a picnic  or  the  something  frowning]  S:  What k i n d o f l o o k i s t h a t ?  I:  What do you  think?  S: Her f r i e n d s p u s h e d h e r a s i d e and when s h e ' s d o i n g s o m e t h i n g o r e a i n g what s h e ' s not s u p p o s e d t o . She knows t h a t i t s w r o n g and s h e ' s a l r e a d y done i t . Then she f e e l s r e a l l y bad a b o u t i t . [ P i c t u r e o f boy S:  He  just  crying]  found out  about i t .  [ P i c t u r e o f woman l e a n i n g o v e r boy S: I s t h a t a t e a c h e r or h i s mom? s a y i n g he's u s e l e s s o r s o m e t h i n g . I:  Are  there  t h i n g s you  S:  I wonder i f t h e y ' r e  at  desk]  T h e y ' r e a n g r y w i t h him and He l o o k s mad, confused.  wonder a b o u t b e c a u s e you ever  going  to f i n d  a  cure.  have  diabetes?  127 I : Can y o u t e l l me any s t o r i e s you l e a r n a b o u t d i a b e t e s ?  about other d i a b e t i c s  that  helped  S: WHen I went t o camp t h e f i r s t t i m e I d i d n ' t l i k e g i v i n g needles. And I saw a l l t h o s e l i t t l e e i g h t y e a r o l d s d o i n g t h e i r n e e d l e s and t h a t s o r t o f e n c o u r a g e d me and I had t o do my own now, b e c a u s e l i t t l e k i d s were d o i n g i t . I:  Are  t h e r e q u e s t i o n s t h a t p e o p l e have a s k e d  you.  S: was h a r d t o e x p l a i n or t h e y a s k . People look at me when t h e y h e a r I have t o t a k e n e e d l e s . "How c o u l d you do something l i k e t h a t ? " I f t h e y l e a r n e d t h e way a d i a b e t i c has t o l i v e , maybe t h e y ' d u n d e r s t a n d a l o t more. I : T h i s man h a s had d i a b e t e s f o r 50 has h e l p e d him l i v e t h i s l o n g ?  y e a r s . Can  you  tell  me  what  S: He's p r o b a b l y one o f t h o s e p e o p l e t h a t f o l l o w s h i s d i e t and g o e s t o see t h e d o c t o r a l l t h e t i m e . He p r o b a b l y i s one o f t h o s e p e o p l e who e x e r c i s e a l o t . T h a t p r o b a b l y k e p t him h e a l t h y . I:  What w o u l d a c u r e  be?  S: I t s s o r t of a w i e r d i d e a - - i f they c o u l d t a k e B c e l l s out of somebody e l s e and p u t them i n t h e d i a b e t i c s . I know i t s o u n d s funny. I:  What w o u l d t h a t mean f o r y o u ?  S: I d o n ' t know. No more s h o t s . No more b l o o d t e s t s . diet. I ' d h a v e t h e u r g e t o e a t more f o o d . I : You know t h e t h i n g s y o u h a v e t o do e v e r y day diabetes. What do o t h e r p e o p l e need t o know?  No  because you  more have  S: Where t h e i n s u l i n comes f r o m . P e o p l e ask me and i t s s o r t o f h a r d t o e x p l a i n . Why t h e r e a r e so many d i f f e r e n t k i n d s . Why the p e r s o n needs i t . How t h e y become a d i a b e t i c i f t h e y know somebody. I ' v e t o l d them i t s n o t c a t c h y so nobody i n my s c h o o l i s a f r a i d of g e t t i n g i t . I n my o t h e r s c h o o l , when I f i r s t g o t i t , e v e r y b o d y t h o u g h t i t was c a t c h y . I f my l i t t l e b r o t h e r and might help a b i t . I:  Do y o u r  sister  could understand  what I h a v e — i t  p a r e n t s t a l k t o them?  S: My mom and dad h a v e , I d o n ' t t h i n k t h e y ' r e o l d enough t o f i g h t over i t . They're not t h a t o l d . Teachers. Most o f them know a l l a b o u t i t . I t h i n k t h e y do, t h e y ' v e had q u i t e a few d i a b e t i c s i n t h e s c h o o l and t h e y ' v e  128 l e a r n e d from e x p e r i e n c e . I:  What w o u l d  you l i k e  t o do a f t e r y o u f i n i s h  school?  S: I ' d l i k e t o be a t e a c h e r . My dad w a n t s me t o become an a i r l i n e s t e w a r d e s s . I sometimes t h i n k about becoming a n u r s e but t h e n I t h i n k o f a l l t h e g r o s s s t u f f and g o r y t h i n g s I have t o do and I d e c i d e n o t t o . I : A r e t h e r e a n y t h i n g s we h a v e n ' t t a l k e d u n d e r s t a n d t h e meaning o f d i a b e t e s ? S:  What do y o u mean by t h a t ?  I:  Things p e o p l e c o u l d l e a r n about  about  that  c a n h e l p us  diabetes.  S: How t o r e a c t a t s c h o o l , l i k e when y o u ' r e h a v i n g a r e a c t i o n you s h o u l d t e l l y o u r f r i e n d s . You s h o u l d t e l l y o u r f r i e n d s how t o cope w i t h i t . I d o n ' t t h i n k any o f my f r i e n d s know what t o d o . They l o o k a t me and s a y — y o u r f a c e i s a l l p a l e , o r y o u ' r e l o w or s o m e t h i n g . Then I h o l d up my h a n d — i t s s h a k y . L i k e Kim, t e a r s r o l l i h n g down h e r f a c e b e c a u s e y o u ' r e s o l o w . Y o u ' r e r i g h t i n t h e m i d d l e o f a s u b j e c t and y o u d o n ' t r e e l l i k e g o i n g , "Can I go o u t o f t h e c l a s s r o o m f o r a s e c . ? " You j u s t w a i t and w a i t and w a i t , t h e n i t s g e t t i n g w o r s e r and w o r s e . The p e r s o n s i t t i n g b e s i d e y o u s e e s y o u r head d r o p t o t h e t a b l e a n d , " I t h i n k s h e ' s low". I had i t i n my d e s k l a s t y e a r . I t happened when we were at French. The t e a c h e r r u n s up and r u n s back and s t a r t s s h o v i n g t h i n g s i n my mouth and I d o n ' t know w h a t ' s g o i n g o n . Then e v e r y b o d y ' s a s k i n g " a r e you a l l r i g h t " , " a r e you sure y o u ' r e o k ? " I:  Good.  That's a l l .  T h a n k s v e r y much f o r t a l k i n g  t o me.  NOTES FOLLOWING INTERVIEW: Vanessa t a l k e d q u i t e c a n d i d l y d u r i n g the i n t e r v i e w . Her m o t h e r as w e l l as s i s t e r and b r o t h e r w e r e i n t h e l i v i n g room w h i l e we were i n t h e k i t c h e n s i t t i n g , a t t h e t a b l e . A f t e r t h e i n t e r v i e w we t a l k e d i n t h e l i v i n g V a n e s s a m e n t i o n e d t h a t when t h e y go c a m p i n g a t home, e x c e p t no t r a v e l l i n g . She t h o u g h t s i s t e r d i d n ' t n o t i c e t h a t she a t e d i f f e r e n t  room a b o u t my s t u d y . i t s just l i k e being h e r b r o t h e r and foods.  129 APPEHDIX EIGHT CHILDBEI'S DiAYIIGS OF DIABETES 1. What I n s u l i n  Drawer: Overall Specifio  Dianne  Does  (\2 y e a r s )  Impression: Indicator:  rote learning of insulin aotion one k e y a n d one c e l l  130 2.  Diabetes  Speoific indicators! i n s u l i n t r a v e l l i n g to panoreasj i n t e r n a l components--'blood v e i n ' , panoreas and incomplete and e n l a r g e d abdomen without head or l e g s .  131 3.  Diabetes  Drawer:  Tyson  (11  years)  O v e r a l l i m p r e s s i o n : concerned with i n s u l i n , t e s t i n g and ' b a l a n c i n g , food not i n c l u d e d i n balance. Specific indicators: glucose monitor, balance of i n s u l i n exercise. Food omitted. 1  and  132 4. Diabetes Drawer:  Krista  (10  years)  O v e r a l l i m p r e s s i o n : concerned with t e s t i n g and i n j e c t i o n s , r e a l i z i n g e x e r c i s e i s part of the r o u t i n e ; not i n t e g r a t e d with s e l f concept. S p e c i f i c i n d i c a t o r s : Food and  self  omitted.  133 5.  Morning  Drawer:  Routine  Vanessa  (12  Overall impression:  years) Aspeots  that make l i k e  different.  Specific indicators: t e s t i n g , i n j e c t i n g , breakfast and running to the bus stop. Dpper body omitted.  134 6.  Me  Drawer: Overall  Cathy  (12 years)  Impression:  Specific Indicators:  Good s e l f Doesn't  image. dwell on medical a s p e c t s .  

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