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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 . E c , U n i v e r s i t y of Saskatchewan, 1974 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENT FOR THE DEGREE OF MASTER OF ARTS i n THE FACULTY OF GRADUATE STUDIES (Department of Mathematics and Science Education) We accept t h i s t h e s i s as conforming to the r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA September, 1986 © Deborah Ann L e a c h , 1986 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by h i s or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of The University of B r i t i s h Columbia 1 9 5 6 Main Mall Vancouver, Canada V 6 T 1 Y 3 i i ABSTRACT T h i s e x p l o r a t o r y s t u d y was a i m e d a t u n c o v e r i n g d i a b e t i c c h i l d r e n ' s b e l i e f s and i d e a s a b o u t d i a b e t e s m e l l i t u s . C h i l d r e n a g e d 8 to 12 y e a r s were o b s e r v e d a t summer camp w h e r e t h e y p a r t i c i p a t e d i n v a r i o u s r o l e p l a y i n g a c t i v i t i e s d e s i g n e d t o make t h e i r b e l i e f s a b o u t d i a b e t e s e x p l i c i t . T w e l v e c h i l d r e n w e r e l a t e r i n t e r v i e w e d a t home u s i n g a m o d i f i c a t i o n o f P i a g e t ' s c l i n i c a l m e t h o d . A n a l y s i s o f t h e s e d a t a was f o c u s s e d o n how c h i l d r e n e x p l a i n d i a b e t e s f r o m a p h e n o m e n o l o g i c a l p e r s p e c t i v e , and how c h i l d r e n i n t e r p r e t m e d i c a l k n o w l e d g e a b o u t d i a b e t e s . The s t u d y i n d i c a t e d t h a t c h i l d r e n h a v e a good u n d e r s t a n d i n g o f c e r t a i n b i o m e d i c a l c o n c e p t s and i l l u s t r a t e d t h e i m p o r t a n c e o f e l i c i t i n g t h e c h i l d ' s e x p l a n a t o r y mode l b e f o r e i n t r o d u c i n g c l i n i c a l e x p l a n a t i o n s . C o n c e p t s and p r i n c i p l e s t h a t w e r e a b s t r a c t o r no t d i s c u s s e d w i t h c h i l d r e n were p o o r l y a s s i m i l a t e d , i n d i c a t i n g t h e need t o q u e s t i o n them p e r i o d i c a l l y and h e l p them t o u n d e r s t a n d more c o m p l e x i d e a s . The e x p l i c a t i o n o f c h i l d r e n ' s p e r s o n a l p e r s p e c t i v e s c o n f i r m e d p r e v i o u s r e s e a r c h i n d i c a t i n g t h e need t o c o n s i d e r t h e i r f e e l i n g s a b o u t b e i n g d i f f e r e n t and t h e c o n s t r a i n t s a t t a c h e d t o h a v i n g d i a b e t e s . i i i TABLE OF CONTENTS Abstract • i i L i s t of Tables v i L i s t of Figures v i i Acknowledgements v i i i CHAPTER ONE STATEMENT OF THE PROBLEM I. Introduction 1 II. The Research Focus 7 The Problem 8 III. Methods of the Study 9 IV. Scope and Limitations of the Study 10 V. Educational Significance of the Study 11 CHAPTER TWO A REVIEW OF THE LITERATURE I. Introduction 12 II. C l i n i c a l Construction of Diabetes 12 Biomedical Approach to C l i n i c a l Practice.. 15 Hermeneutic Model of C l i n i c a l Practice ... 19 III. Psychological Context of the Study 27 IV. Children's Understanding of Il l n e s s 31 V. Children and Diabetes 32 i v CHAPTER THREE METHODS OF THE STUDY I . I n t r o d u c t i o n 3 9 I I . R e s e a r c h D e s i g n 3 9 C h a r a c t e r i s t i c s o f t h e Sample 4 0 I I I . R a t i o n a l e f o r T e c h n i q u e s 4 1 I V . D a t a C o l l e c t i o n P r o c e d u r e s 4 2 V. D a t a P r o c e s s i n g and A n a l y s i s 4 5 CHAPTER FOUR FINDINGS OF THE STUDY I . I n t r o d u c t i o n 4 9 I I . A n a l y s e s o f I n d i v i d u a l C h i l d r e n ' s C o n c e p t s 4 9 I I I . P a t t e r n s o f R e s p o n s e s f r o m C h i l d r e n w i t h D i a b e t e s : E t i o l o g y 5 4 C o u r s e 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 R o l e . . . . 5 5 E f f e c t o f H a v i n g D i a b e t e s : P a t h o p h y s i o l o g y 6 0 O n s e t o f Symptoms 6 4 T r e a t m e n t . 6 9 I V . C o m p a r i s o n B e t w e e n t h e C h i l d / B i o m e d i c a l M o d e l s . 7 6 CHAPTER F I V E A SUMMARY OF MAJOR FINDINGS I . I n t r o d u c t i o n 8 4 I I . O b j e c t i v e s o f t h e S t u d y 8 4 I I I . C o n c l u s i o n s 8 5 I V . E d u c a t i o n a l I m p l i c a t i o n s 8 6 V. R e c o m m e n d a t i o n s f o r F u r t h e r R e s e a r c h 9 0 V BIBLIOGRAPHY 92 APPENDIX ONE: G o w i n ' s K n o w l e d g e Vee 100 APPENDIX TWO: L e t t e r o f P a r e n t a l / G u a r d i a n C o n s e n t . . . . 101 APPENDIX T H R E E : Camp Q u e s t i o n s / R o l e P l a y S c e n a r i o s 102 APPENDIX FOUR: D e v e l o p m e n t o f I n t e r v i e w F o r m a t . . . . . . . . 104 APPENDIX F I V E : I n t e r v i e w F o r m a t 107 APPENDIX S I X : B i o m e d i c a l M o d e l o f D i a b e t e s 109 APPENDIX S E V E N : E x e m p l a r y T r a n s c r i p t f r o m an I n t e r v i e w . 120 APPENDIX E I G H T : C h i l d r e n ' s D r a w i n g s o f D i a b e t e s 129 v i L I S T OF TABLES T a b l e I E x a m p l e s 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 f r o m 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 v i i L I S T OF FIGURES F i g . 1. C o m m u n i c a t i o n i n D i a b e t e s : T r a n a c t i o n B e t w e e n M o d e l s 9 F i g . 2 . C o m p a r i s o n o f t h e b i o m e d i c a l and c u l t u r a l h e r m e n e u t i c m o d e l s o f c l i n i c a l p r a c t i c e 14 F i g . 3. I n f e r r i n g C o n c e p t u a l S t r u c t u r e on t h e I n t e r v i e w Vee 47 F i g . 4 . T o d d ' s I n t e r v i e w Vee 48 F i g . 5 . C a t h y ' s I n t e r v i e w Vee 50 v i i i ACKNOWLEDGEMENTS T h i s s t u d y w o u l d n o t have been p o s s i b l e w i t h o u t t h e e n t h u s i a s t i c p a r t i c i p a t i o n o f t h e c h i l d r e n and t h e i r f a m i l i e s a s w e l l t h e s t a f f o f Camp K a k h a m e l a . From my o b s e r v a t i o n s and d i s c u s s i o n s w i t h the c l i n i c i a n s a t c h i l d r e n ' s d i a b e t i c c l i n i c s a t The B r i t i s h C o l u m b i a C h i l d r e n ' s H o s p i t a l and L i o n ' s G a t e H o s p i t a l I b e g a n t o f e e l t h i s t h e s i s was r e l e v a n t . I am a l s o g r a t e f u l t o t h e C a n a d i a n D i a b e t e s A s s o c i a t i o n i n B r i t i s h C o l u m b i a f o r e n d o r s i n g t h e r e s e a r c h , and t o G a a l e n E r i c k s o n and Nancy W a x i e r M o r r i s o n f o r c o a c h i n g me i n t h e e n d e a v o u r . 1 CHAPTER ONE STATEMENT OF THE PIOBLEM I . INTRODUCTION The purpose of t h i s c h a p t e r i s to p r o v i d e background i n f o r m a t i o n to the study and h i g h l i g h t the l i t e r a t u r e r e l e v a n t to the g e n e r a l problem area of u n d e r s t a n d i n g c h i l d r e n ' s b e l i e f s about d i a b e t e s . Background to the Study L i t e r a t u r e r e l a t e d t o c h i l d r e n ' s b e l i e f s about s c i e n t i f i c c o n c epts i n d i c a t e s t h a t c h i l d r e n have t h e i r own u n d e r s t a n d i n g and i n t e r p r e t a t i o n s which must be c o n s i d e r e d i n an e d u c a t i o n a l c o n t e x t ( D r i v e r and E a s l e y , 1978). An u n d e r s t a n d i n g and a p p r e c i a t i o n of c h i l d r e n ' s b e l i e f s i s e s p e c i a l l y r e l e v a n t f o r h e a l t h p r o f e s s i o n a l s 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 as d i a b e t e s . I n s u l i n dependent d i a b e t e s m e l l i t u s which o c c u r s most o f t e n i n c h i l d h o o d i s p r i m a r i l y due to i n s u l i n d e f i c i e n c y . However, i n s u l i n replacement t h e r a p y i s not a cure f o r d i a b e t e s and t r e a t m e n t does not reproduce normal m e t a b o l i c f u n c t i o n i n g . The extreme changes i n blood g l u c o s e l e v e l s e x p e r i e n c e d by c h i l d r e n w i t h d i a b e t e s are r e l a t e d t o many f a c t o r s , i n c l u d i n g low l e v e l s of endogenous i n s u l i n , u n p r e d i c t a b l e p a t t e r n s of growth, a c t i v i t y and e a t i n g . (The b i o m e d i c a l model o f d i a b e t e s i s p r e s e n t e d i n Appendix S i x ) . 2 D i a b e t e s i s a complex d i s o r d e r and few i l l n e s s e s demand such comprehensive and t e c h n i c a l competence from the c l i e n t (Johnson and Rosenbloom, 1982). The onset i s sudden and h e a l t h p r o f e s s i o n a l s expect c h i l d r e n to f o l l o w r i g o r o u s t r e a t m e n t regimens and r e s t r i c t i o n s not imposed on t h e i r h e a l t h y p e e r s . The c h i l d w i t h d i a b e t e s l i v e s w i t h the c o n s t a n t p o s s i b i l i t y of h y p o g l y c e m i a , the c o n s t r a i n t s of i n s u l i n i n j e c t i o n s , the n e c e s s i t y of f r e q u e n t s e l f - t e s t i n g o f b l o o d g l u c o s e , and d i e t r e s t r i c t i o n s ; and the p r o s p e c t of l o n g - t e r m c o m p l i c a t i o n s . How a c h i l d r e a c t s to d i a b e t e s i s l a r g e l y determined by the response of o t h e r f a m i l y members ( J e f f e r s o n e t a l 1985). C h i l d r e n w i t h d i a b e t e s e x p e r i e n c e v a r i o u s p s y c h o s o c i a l problems, i n c l u d i n g i n t e r p e r s o n a l problems w i t h t h e i r f a m i l y and w i t h o t h e r c h i l d r e n , which may be brought on or e x a c e r b a t e d by d i a b e t e s (Johnson, 1980). H e a l t h p r o f e s s i o n a l s and f a m i l i e s want to ensure t h a t c h i l d r e n w i t h d i a b e t e s grow and mature n o r m a l l y , and a c h i e v e p s y c h o l o g i c a l and e m o t i o n a l w e l l - b e i n g (Arky, 1982) which means p r a c t i t i o n e r s need t o l e a r n ways t o p r o v i d e e f f e c t i v e e d u c a t i o n and s o c i a l support as a d j u n c t s to good m e d i c a l c a r e . D i a b e t e s e d u c a t o r s aware of the v a l u e s , b e l i e f s and needs which i n f l u e n c e t h e i r p r a c t i c e can grow p r o f e s s i o n a l l y and e s t a b l i s h more genuine and e f f e c t i v e p a r t n e r s h i p s w i t h t h e i r c l i e n t s (Anderson, 1985). The h e a l t h p r o f e s s i o n a l ' s approach to 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 l e a d s to i m p o r t a n t i m p l i c a t i o n s f o r the management of d i a b e t e s : i n f l u e n c i n g her b e h a v i o u r , her r e l a t i o n s h i p w i t h c l i e n t s and sense of s a t i s f a c t i o n or f r u s t r a t i o n w i t h her 3 e d u c a t i o n a l r o l e (Anderson, 1 9 8 5 ) . A b a s i c d i f f i c u l t y e x i s t s i n the c u r r e n t f o c u s of d i a b e t e s e d u c a t i o n . Much of modern treatment i s s t i l l based on the t r a d i t i o n a l m e d i c a l approach which views h e a l t h care p r a c t i t i o n e r s , t r a i n e d to f o c u s t h e i r a t t e n t i o n on d i s e a s e , as the e x p e r t s r e s p o n s i b l e f o r h e a l t h c a r e . D i a b e t e s e d u c a t i o n programs emphasize c o n t r o l l i n g b l o o d g l u c o s e and compliance to the p r e s c r i p t i o n s o f the h e a l t h - c a r e team. In many s i t u a t i o n s , c o n t r o l or management has become a c c e p t e d as a synonym f o r the e n t i r e d i a b e t e s syndrome ( K i v e l o w i t z , 1 9 8 1 ) . T h i s t r a d i t i o n a l approach may be s a t i s f a c t o r y f o r c e r t a i n acute m e d i c a l problems, but not c h r o n i c c o n d i t i o n s , such as d i a b e t e s , where much of the r e s p o n s i b i l i t y f o r treatment r e s t s w i t h the c l i e n t (Szasz and H o l l e n d e r , 1 9 5 6 ; Anderson, 1 9 8 5 ) . M e d i c a l t e c h n o l o g y alone i s i n s u f f i c i e n t to a c h i e v e o p t i m a l m e d i c a l management of the c h r o n i c a l l y i l l c h i l d . E q u a l l y i m p o r t a n t to c h i l d r e n w i t h d i a b e t e s and t h e i r f a m i l i e s are e n v i r o n m e n t a l and e m o t i o n a l f a c t o r s . C h i l d h o o d d i a b e t e s i s a key example of an i l l n e s s where p s y c h o l o g i c a l and b i o m e d i c a l a s p e c t s are i n e x t r i c a b l y i n t e r t w i n e d ( W i l l i a m s o n , 1 9 8 4 ) . By b i o m e d i c a l d e f i n i t i o n , d i a b e t e s i s a complex d i s o r d e r caused by the f a i l u r e of the pancreas to r e l e a s e enough i n s u l i n i n t o the body. There are f o u r main types of d i a b e t e s m e l l i t u s . Type I , a l s o c a l l e d i n s u l i n - d e p e n d e n t d i a b e t e s (IDDM), j u v e n i l e - o n s e t d i a b e t e s , b r i t t l e d i a b e t e s , or k e t o s i s - p r o n e d i a b e t e s , i s the most s e r i o u s form of the d i s e a s e . Type I d i a b e t e s most o f t e n develops d u r i n g c h i l d h o o d , a l t h o u g h young 4 a d u l t s a l s o can develop t h i s form. IDDM i s a s s o c i a t e d w i t h c e r t a i n HLA types and i s l e t c e l l a n t i b o d i e s a re f r e q u e n t l y p r e s e n t . The o t h e r forms a r e : non i n s u l i n - d e p e n d e n t d i a b e t e s , g e s t a t i o n a l d i a b e t e s and d i a b e t e s secondary to o t h e r e n d o c r i n e d i s o r d e r s . The g o a l o f treatment i s to m a i n t a i n a balance between g l u c o s e and i n s u l i n . The e f f e c t s are s e v e r e - - t h e eyes, k i d n e y s , nervous system may be a f f e c t e d — b u t can be p r e v e n t e d . Regular e x e r c i s e , f o l l o w i n g the proper d i e t , r e c o g n i z i n g and t r e a t i n g r e a c t i o n s and prompt tr e a t m e n t of i n f e c t i o n s a l l o w people w i t h d i a b e t e s t o l e a d h e a l t h y , normal l i v e s (Glanze e t a l , 1985). A major problem w i t h the m e d i c a l approach i s t h a t the h e a l t h care p r a c t i t i o n e r and the person w i t h d i a b e t e s may have v e r y d i f f e r e n t p e r c e p t i o n s and p r i o r i t i e s w i t h r e g a r d to d i a b e t e s management. For a c h i l d , a v o i d i n g an i n s u l i n r e a c t i o n i s a g r e a t e r c o n c e r n than h i g h b l o o d g l u c o s e r e a d i n g s (which may l e a d to d i a b e t i c c o m p l i c a t i o n s i n the l o n g term) . While many h e a l t h care p r a c t i t i o n e r s see the treatment regimen as a s o l u t i o n , c l i e n t s may see i t as p a r t of the problem of h a v i n g d i a b e t e s (Anderson, 1985). What may have been l a b e l l e d noncompliance can be viewed as a communication problem r a t h e r than a b e h a v i o u r a l one (Sims, 1979). These examples i l l u s t r a t e the need f o r h e a l t h p r o f e s s i o n a l s and f a m i l i e s t o share p e r s p e c t i v e s and s e t m u t u a l l y a c c e p t a b l e g o a l s . To f a c i l i t a t e the marked changes i n l i f e s t y l e demanded by d i a b e t e s management regimes, a t t e n t i o n must f o c u s on the c l i e n t and the f a m i l y , a l t e r i n g the n a t u r e 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 v e r y fundamental way (Cohen, 1 9 7 9 ) . An e d u c a t i o n a l approach, drawn from c o u n s e l l i n g p s y c h o l o g y , has been suggested as a r e l e v a n t and v a l u a b l e a l t e r n a t i v e to the m e d i c a l approach (Anderson, 1 9 8 5 ) . The e d u c a t i o n a l approach which aims to f r e e c l i e n t s to d e f i n e and meet t h e i r own needs, encourages p e r s o n a l r e s p o n s i b i l i t y and r e q u i r e s the p r a c t i t i o n e r to u n d e r s t a n d and work through the c l i e n t ' s frame of r e f e r e n c e . To be an e f f e c t i v e d i a b e t e s educator the h e a l t h p r o f e s s i o n a l must be a b l e to blend the t r a d i t i o n a l and e d u c a t i o n a l approaches, i n v a r y i n g p r o p o r t i o n s f o r each c l i e n t . The p u r e l y m e d i c a l approach i n v o l v i n g a p a s s i v e c l i e n t does not work f o r most f a m i l i e s because the n a t u r e of d i a b e t e s s e l f - c a r e i n c r e a s e s the importance of the c l i e n t ' s p o i n t of view and r e q u i r e s s i g n i f i c a n t i n p u t and i n v o l v e m e n t of f a m i l i e s . The p u r e l y e d u c a t i o n a l approach does not s a t i s f y most c l i e n t s because o n l y a m i n o r i t y are w i l l i n g and a b l e to accept complete r e s p o n s i b i l i t y f o r t h e i r h e a l t h and employ h e a l t h care p r o f e s s i o n a l s p r i m a r i l y as c o n s u l t a n t s . The p r a c t i t i o n e r must be knowledgeable about the d i f f e r e n c e s i n each approach and be f l e x i b l e and p r a g m a t i c enough to c r e a t e a c o m p a t i b l e c o m b i n a t i o n f o r each f a m i l y . An e f f e c t i v e c l i e n t - c e n t e r e d educator observes and l i s t e n s to c l i e n t s to determine how much d i r e c t i o n v e r s u s autonomy each r e q u i r e s (Anderson, 1 9 8 5 ) . I t i s the w o r k i n g h y p o t h e s i s of t h i s t h e s i s t h a t an u n d e r s t a n d i n g and a p p r e c i a t i o n o f c h i l d r e n ' s i d e a s about d i a b e t e s s h o u l d form the b a s i s f o r d i a b e t e s e d u c a t i o n . A r e c o n c e p t u a l i z a t i o n o f the r e l a t i o n s h i p between the b i o c h e m i c a l 6 p r o c e s s and the c l i n i c a l d a ta of d i a b e t e s i s r e q u i r e d i n o r d e r to f a c i l i t a t e c l i e n t - c l i n i c i a n communication ( E n g e l , 1977). Engel argued t h a t any attempt to develop an a l t e r n a t e m e d i c a l model s h o u l d b e g i n w i t h 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 as a meaning s t r u c t u r e . In o r d e r to understand the c h i l d ' s model of d i a b e t e s , i t i s n e c e s s a r y to i n t e r p r e t what d i a b e t e s means t o c h i l d r e n . W h i l e s i g n i f i c a n t work has been done r e g a r d i n g the t e c h n i c a l a s p e c t s o f d i a b e t e s management, the c h i l d ' s p e r s p e c t i v e about d i a b e t e s remains an area to be s t u d i e d . The purpose of t h i s study was to make e x p l i c i t what i s means to have d i a b e t e s as a c h i l d . T h i s i n v e s t i g a t i o n was grounded i n the p h i l o s o p h y t h a t c h i l d r e n l e a r n what i t means t o be d i a b e t i c , •making t h e i r own sense' of the w o r l d by ' c o n s t r u c t i n g ' c o n c e p t s . Such c o n c e p t u a l l e a r n i n g i s the i n t e g r a t i o n of i n t e r a c t i o n s w i t h the environment ( i n t u i t i v e , gut or n a i v e knowledge) w i t h f o r m a l i n s t r u c t i o n or d i s c i p l i n e knowledge, i . e . someone e l s e ' s i n t e r p r e t a t i o n of the w o r l d (West and P i n e s , (1985). Most m e a n i n g f u l l e a r n i n g i n v o l v e s l i n k i n g o f new i n f o r m a t i o n to an e x i s t i n g concept f o r which the new m a t e r i a l 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 case of the more i n c l u s i v e concept ( A u s u b e l , 1968). S i n c e m e a n i n g f u l l e a r n i n g r e q u i r e s l i n k i n g new knowledge, i . e . b i o m e d i c a l c o n c e p t s , to r e l e v a n t concepts the l e a r n e r a l r e a d y has, i . e . p e r s o n a l b e l i e f s , the h e a l t h p r a c t i t i o n e r s h o u l d take i n t o account both p e r s p e c t i v e s when a care p l a n i s b e i n g d e v e l o p e d . I t i s i m p o r t a n t f o r h e a l t h p r o f e s s i o n a l s and e d u c a t o r s to l e a r n how 7 c h i l d r e n come to understand the o r i g i n s , the p r e v e n t i o n and the treatment of d i a b e t e s . T h i s knowledge should form the b a s i s f o r e d u c a t i n g c h i l d r e n about t h e i r h e a l t h and should p r o v i d e a framework f o r d e v e l o p i n g Improved e x p l a n a t i o n s o f d i a b e t e s f o r c h i l d r e n ; perhaps h e l p i n g them to cope more e f f e c t i v e l y with t h e i r i l l n e s s and i m p r o v i n g t h e i r u n d e r s t a n d i n g and compl iance wi th medica l regimens ( P e r r i n and G e r r i t y , 1981). I I . THE RESEARCH FOCUS T h i s i n v e s t i g a t i o n was undertaken for s e v e r a l r e a s o n s : 1. D iabe tes i s a c h r o n i c c o n d i t i o n which occurs i n c h i l d h o o d . 2. Gaps e x i s t i n the c u r r e n t l i t e r a t u r e r e g a r d i n g when and what to t e l l c h i l d r e n who have a c h r o n i c i l l n e s s ( A l l e n et a l , 1984). 3 . The c u r r e n t t rend i n the management of c h r o n i c i l l n e s 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 the c l i e n t as part of the h e a l t h care team ( E t z w i l e r , 1980). 4. In p r o f e s s i o n a l l y d e a l i n g wi th c h i l d r e n who are i l l i t i s important to c o n s i d e r p r i o r c o n c e p t i o n s the c h i l d might have to f a c i l i t a t e h i s care (Gratz and P i l i a v i n , 1980). 5. As a d u l t s b e t t e r unders tand c h i l d r e n ' s c o g n i t i v e c a p a b i l i t i e s , c h i l d r e n ' s p a r t i c i p a t i o n i n h e a l t h care processes becomes not only l e s s f r i g h t e n i n g , but may serve as an area for l e a r n i n g (Steward, 1981). 6. C h i l d r e n today seem to d i s p l a y a g r e a t e r s o p h i s t i c a t i o n and awareness w i th regard to t h e i r environment (Gratz and P i l i a v i n , 1981) and l i t t l e r e s e a r c h has been r e p o r t e d on d iabe te s from the c h i l d ' s frame of r e f e r e n c e . 8 The Problem The purpose of t h i s study was to make e x p l i c i t the meaning d i a b e t e s holds f o r c h i l d r e n and to d e s c r i b e t h e i r ' n a i v e t h e o r i e s 1 or p e r s p e c t i v e s o f d i a b e t e s . S p e c i f i c a l l y to answer the q u e s t i o n s : (1) How do c h i l d r e n e x p l a i n d i a b e t e s from a phenomenologica l p e r s p e c t i v e ? (2) How do c h i l d r e n i n t e r p r e t med ica l knowledge about d i a b e t e s ? (3) Are there p a t t e r n s i n c h i l d r e n ' s i d e a s about d i a b e t e s ? I t was h y p o t h e s i z e d t h a t a c h i l d ' s model o f d i a b e t e s , the pr imary focus of t h i s s t u d y , cou ld be i d e n t i f i e d by making e x p l i c i t c h i l d r e n ' s p e r c e p t i o n s o f d i a b e t e s . C l i n i c a l e x p l a n a t i o n s o f d i a b e t e s i m p l i c i t i n the b i o m e d i c a l model were used to r e p r e s e n t the medica l p e r s p e c t i v e of d i a b e t e s . By making e x p l i c i t v a r i o u s aspects o f c h i l d r e n ' s model of d i a b e t e s i t seems l i k e l y tha t a h e a l t h p r o f e s s i o n a l , who should take i n t o account both the c h i l d ' s model and the model , would be i n a much b e t t e r p o s i t i o n to develop an e f f e c t i v e d iabe te s care p l a n . R e l a t i o n s h i p s among the v a r i a b l e s i n the proposed communication model are i l l u s t r a t e d i n F i g u r e 1. 9 C h i l d ' s B e l i e f s About C h i l d ' s > Model of \ D iabetes \ Diabetes \ \ Shared N e g o t i a t e d > > Meaning About > D iabe te s D iabe te s Care Plan / / C l i n i c a l E x p l a n a t i o n s of D iabe tes B i o m e d i c a l / > Model o f Diabetes (Note: arrows i n d i c a t e d i r e c t i o n ) F i g u r e 1 Communication i n D i a b e t e s : T r a n s a c t i o n Between Models (Adapted from L i p o w s k i , 1973) I I I . METHODS OF STUDY A c o m b i n a t i o n of t echn iques were used to e x p l o r e what d i a b e t e s means to c h i l d r e n wi th d i a b e t e s . C h i l d r e n aged 8 to 12 a t t e n d i n g a d i a b e t e s summer camp p a r t i c i p a t e d i n the s t u d y . An u n s t r u c t u r e d ' e t h n o g r a p h i c approach ' was used to examine c h i l d r e n ' s b e l i e f s and the dynamics a f f e c t i n g the c h i l d r e n wi th d i a b e t e s . C o n v e r s a t i o n s , r o l e p l a y s and d i s c u s s i o n s , i n a d d i t i o n to c l i n i c a l o b s e r v a t i o n s , p r o v i d e d i n s i g h t i n t o c h i l d r e n ' s b e l i e f s about d i a b e t e s . F o l l o w i n g camp, of twelve c h i l d r e n was i n t e r v i e w e d to conf i rm and f u r t h e r probe t h e i r i d e a s and u n d e r s t a n d i n g o f d i a b e t e s c o n c e p t s . t r a n s c r i p t s o f the aud io tapes from r o l e p l a y s and i n t e r v i e w s , as w e l l as c h i l d r e n ' s drawings . Through v e r b a l and content a n a l y s i s o f f i e l d notes and tape t r a n s c r i p t s , models o f the s t r u c t u r e of c h i l d r e n ' s b e l i e f s were d e r i v e d . C h i l d r e n ' s c o n c e p t u a l i z a t i o n s were e x p l o r e d from t h e i r d e s c r i p t i o n s of Records were kept i n the form of f i e l d notes and memories, f e e l i n g s , b e l i e f s , i s s u e s and problems r e l a t e d t o 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 d i a b e t e s concepts was as s e s s e d i n terms o f t h e i r congruence w i t h the b i o m e d i c a l model. IV. SCOPE AND LIMITATIONS OF THE STUDY T h i s study d e s c r i b e s the p e r s p e c t i v e s o f a convenience sample of c h i l d r e n w i t h d i a b e t e s . C h i l d r e n ' s i d e a s , q u e s t i o n s and a c t i o n s noted d u r i n g the camp s e s s i o n s formed the b a s i s f o r the i n t e r v i e w p r o t o c o l . The c l i n i c a l e x p l a n a t i o n s r e p r e s e n t i n g the b i o m e d i c a l model, were taken from c u r r e n t d i a b e t e s e d u c a t i o n l i t e r a t u r e . The amount of time the r e s e a r c h e r spent w i t h the c h i l d r e n at camp was l i m i t e d ; i n t e r v i e w s w i t h i n d i v i d u a l s averaged 30 minutes. Input and i n v o l v e m e n t of f a m i l i e s was not planned, because of the s t u d y ' s f o c u s on the c h i l d ' s p e r s p e c t i v e . While the study a d d r e s s e d the c o g n i t i v e and a f f e c t i v e elements of d i a b e t e s e d u c a t i o n , t h e r e was no attempt made to a n a l y z e and p r e d i c t b e h a v i o u r s . 'Compliance' to a c l i n i c a l p r e s c r i p t i o n i n v o l v e s 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 p r e f e r e n c e s and h e a l t h b e l i e f s ( E r a k e r et a l , 1984) which go beyond the scope of t h i s s t u d y . 11 V I . EDUCATIONAL SIGNIFICANCE OF THE STUDY The study p o i n t s out c h i l d r e n ' s p e r s p e c t i v e of d i a b e t e s , and how c h i l d r e n l e a r n about t h e i r c h r o n i c c o n d i t i o n . By e x p l o r i n g c h i l d r e n ' s c o n c e p t u a l i z a t i o n s of d i a b e t e s , h e a l t h p r o f e s s i o n a l s can b e t t e r empathize w i t h the c h i l d who has d i a b e t e s . By i n t e r p r e t i n g between the b i o m e d i c a l model and the c h i l d ' s model, h e a l t h workers can develop care p l a n s to meet the l e a r n i n g needs of c h i l d r e n thus i d e n t i f y i n g when and what e d u c a t i o n a l i n t e r v e n t i o n s s h o u l d be t r i e d . The a n a l y s i s o u t l i n e d i s s u e s f o r c o n s i d e r a t i o n i n the development of a care p l a n . With the c h i l d ' s model of d i a b e t e s used as the s t a r t i n g p o i n t , e d u c a t i o n a l i n t e r v e n t i o n s can be made more a p p r o p r i a t e to the l e a r n i n g needs of c h i l d r e n . 1 2 CHAPTER TWO REVIEW OF THE LITERATURE I . INTRODUCTION T h i s c h a p t e r r e v i e w s the l i t e r a t u r e r e l a t e d to c h i l d r e n ' s u n d e r s t a n d i n g o f d i a b e t e s , encompassing: 1. C l i n i c a l c o n s t r u c t i o n o f d i a b e t e s 2. P s y c h o l o g i c a l c o n t e x t of the study 3. C h i l d r e n ' s u n d e r s t a n d i n g o f h e a l t h and i l l n e s s 4. C h i l d r e n and d i a b e t e s I I . CLINICAL CONSTRUCTION OF DIABETES Today, h e a l t h c a r e systems i n the Western w o r l d d e a l mainly w i t h c h r o n i c c o n d i t i o n s . The major c h a l l e n g e of the f u t u r e i n the f i e l d of h e a l t h care i s the development and i m p l e m e n t a t i o n of a comprehensive d e l i v e r y system w i t h t reatment p r o t o c o l s and programmes i n c l u d i n g e d u c a t i o n , communication s u p p o r t , e v a l u a t i o n and reward components ( E t z w i l e r , 1983). A n t h r o p o l o g i c a l r e s e a r c h s u p p o r t s a view of medicine as a c u l t u r a l system w i t h t h r e e d i s t i n c t i v e and o v e r l a p p i n g arenas of h e a l t h and h e a l t h c a r e : the p o p u l a r , f o l k and p r o f e s s i o n a l s e c t o r s (Kleinman, 1980; Chrisman and Kleinman, 1983). I l l n e s s r e a l i t i e s are grounded i n c o n c e p t u a l i z a t i o n s of d i s t i n c t and complex m e d i c a l s u b c u l t u r e s . A key axiom i n m e d i c a l a n t h r o p o l o g y i s the dichotomy between the p a t i e n t ' s view 1 3 of s i c k n e s s as i l l n e s s and the b i o m e d i c a l view of s i c k n e s s as disease ( E i s e n b e r g , 1977; Kleinman, 1980). Good and Good (1981) have compared the b i o m e d i c a l and c u l t u r a l hermeneutic models of p r a c t i c e (see F i g u r e 2) to i l l u s t r a t e t h i s dichotomy. Kleinman (1980) has i d e n t i f i e d f i v e core f u n c t i o n s i n any h e a l t h c a r e system, whether p o p u l a r , f o l k or p r o f e s s i o n a l . These a r e : (1) the c u l t u r a l c o n s t r u c t i o n of i l l n e s s as a p s y c h o s o c i a l e x p e r i e n c e ; (2) the e s t a b l i s h m e n t of c r i t e r i a to guide 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 and e v a l u a t e t r e a t m e n t approaches; (3) the management of p a r t i c u l a r i l l n e s s e p i s o d e s through communicative o p e r a t i o n s such as l a b e l l i n g and e x p l a i n i n g ; (4) 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 of 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 (5) the management of t h e r a p e u t i c outcomes. The b i o m e d i c a l model r e p r e s e n t i n g the p r o f e s s i o n a l s e c t o r has been w e l l d e f i n e d (see, f o r example E t z w i l e r , 1962a; C r a i g , 1982; L e b o v i t z , 1984). The p o p u l a r view of d i a b e t e s i s l e s s w e l l documented. The purpose of t h i s study was to e x p l o r e two o f the c l i n i c a l f u n c t i o n s i n the h e a l t h care of c h i l d r e n 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 and communications between c l i e n t and c l i n i c i a n . P a t h o l o g i c a l e n t i t y : S t r u c t u r e of r e l e v a n c e : E l i c i t a t i o n p r o c e d u r e s : I n t e r p r e t i v e s t r a t e g y : T h e r a p e u t i c goa l 1 4 C h a r a c t e r i s t i c s o f the b i o m e d i c a l ( e m p i r i c i s t ) c l i n i c a l model C h a r a c t e r i s t i c s o f the c u l t u r a l (hermeneut ic ) c l i n i c a l model Somatic or p s y c h o p h y s i o l o g i c a l l e s i o n or d y s f u n c t i o n Meaningfu l 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 s u f f e r e r Re levant data r e v e a l somatic d i s o r d e r Relevant data r e v e a l meaning o f i l l n e s s Review of systems, l a b o r a t o r y t e s t s E v a l u a t e e x p l a n a t o r y models , decode semantic ne twork I n t e r p r e t i v e g o a l : D i a g n o s i s and e x p l a n a t i o n ( E r k l a r e n ) U n d e r s t a n d i n g (Vers tehen) D i a l e c t i c a l l y e x p l o r e r e l a t i o n s h i p between symptoms and somat ic d i s o r d e r D i a l e c t i c a l l y e x p l o r e r e l a t i o n s h i p between symptoms ( t e x t ) and semantic network ( contex t ) Intervene i n somatic d i s ease process To t r e a t p a t i e n t ' s e x p e r i e n c e : to b r i n g to u n d e r s t a n d i n g h idden aspec t s o f i l l n e s s r e a l i t y and t r a n s f o r m tha t r e a l i t y Fig-ore 2 . C o m p a r i s o n 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 . and c u l t u r a l h e r m e n e u t i c (Adapted from Good & Good, 1981) 1 5 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 E x p e r i e n c e Western a l l o p a t h i c medicine has been dominated 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 s p l i t the human b e i n g i n t o mind and body. The b i o m e d i c a l approach views d i a b e t e s as a c h r o n i c e n d o c r i n e d i s o r d e r of unknown e t i o l o g y a t t r i b u t e d t o g e n e t i c , e n v i r o n m e n t a l and i m m u n o l o g i c a l f a c t o r s ; r e q u i r i n g complex management on a d a i l y b a s i s . Use of t h i s e m p i r i c i s t model has l e d t o advances i n s c i e n c e and medicine which have made an enormous impact on m e d i c a l r e s e a r c h and the h e a l t h care d e l i v e r y system (Ng, 1981). The c u r r e n t t r e n d i n the management of c h r o n i c i l l n e s s e s , such 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 the c l i e n t as p a r t of the h e a l t h c a r e team ( E t z w i l e r , 1980). C l i e n t s and t h e i r f a m i l i e s p l a y s i g n i f i c a n t r o l e s i n d i a b e t e s management a s s i s t e d by r e c e n t advances i n i n s u l i n d e l i v e r y and home blo o d g l u c o s e m o n i t o r i n g . M u l t i p l e d a i l y i n j e c t i o n s or an i n s u l i n pump are used to mimic the s e c r e t i o n o f normal B c e l l s and r e t u r n b l o o d g l u c o s e l e v e l s t o normal. On-the-spot r e a d i n g s of b l o o d g l u c o s e and p e r i o d i c g l y c o s y l a t e d haemoglobin measurements (from the l a b o r a t o r y ) p r o v i d e feedback r e g a r d i n g the e f f e c t i v e n e s s of b l o o d g l u c o s e management e f f o r t s . Records of b l o o d g l u c o s e and u r i n a r y ketone l e v e l s ( i n c h a r t form or e l e c t r o n i c notebook w i t h g r a p h i c microcomputer d i s p l a y ) enable c l i e n t and p r a c t i t i o n e r to a n a l y z e t r e n d s and p l a n f o r improved g l y c e m i c c o n t r o l . 1 6 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 changed over the past few decades, c o n s i s t i n g o f c l i n i c a l d a ta i n k e e p i n g w i t h 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 time (Kleinman, 1980). D i a b e t e s management has been b u i l t on the p r a c t i c e s o f t r a d i t i o n a l magic. P r a c t i t i o n e r s h o l d c e r t a i n b e l i e f s r e g a r d i n g the d i a g n o s i s and t r e a t m e n t of the c o n d i t i o n and assume i t i s u n e t h i c a l not to c o n t r o l d i a b e t e s ( i . e . b l o o d g l u c o s e ) r i g i d l y . These b e l i e f s u n d e r l i n e s the s y m b o l i c importance of the ' c o n t r o l ' r i t u a l f o r p r a c t i t i o n e r s and p a t i e n t s . The b e l i e f t h a t d i a b e t e s can be ' c o n t r o l l e d ' i s an i m p o r t a n t mechanism to s u s t a i n p r a c t i t i o n e r s ' f a i t h 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 . F a c t o r s i n f l u e n c i n g d i a g n o s e s are a r b i t r a r i l y d e r i v e d and n o r m a l i t y of b l o o d g l u c o s e i s s o c i a l l y d e f i n e d . There has o f t e n been l i t t l e s c i e n t i f i c j u s t i f i c a t i o n f o r a c t i o n s taken and d o c t o r s have f r e q u e n t l y 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 ( P o s n e r , 1977). A i n s l i e (1983) has q u e s t i o n e d whether or not i t i s r e a l i s t i c 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 t i g h t c o n t r o l . The s e l e c t i o n of the b l o o d g l u c o s e l e v e l as the o n l y i n d e x o f c o n t r o l causes problems s i n c e t h e r e i s no e v i d e n c e t h a t 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 ( t i g h t c o n t r o l ) w i l l 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 (Johnson, 1982; A i n s l i e , 1983). I n d i a b e t e s , even p e r f e c t compliance does not r e s u l t i n ' c u r e ' but c o n t r o l of the problem (Becker and J a n z , 1985). C o m p l i c a t i o n s such as k i d n e y f a i l u r e , r e t i n o p a t h y , neuropathy and o t h e r v a s c u l a r changes begin 10 to 20 y e a r s a f t e r the onset of d i a b e t e s . Of c h i l d r e n diagnosed as d i a b e t i c between the ages of 5 and 15, a p p r o x i m a t e l y 50% d i e o f r e n a l f a i l u r e by the age of 40-50 y e a r s ; f o r a c h i l d w i t h d i a b e t e s l i f e expectancy i s about 35 y e a r s f o l l o w i n g d i a g n o s i s (Hamburg e t a l , 1982). Communication Between C l i e n t and P r a c t i t i o n e r D i a b e t e s i s p a r t i c u l a r l y d i f f i c u l t t o u n d e r s t a n d ; the e t i o l o g i c a l f a c t o r s , d i s e a s e p r o c e s s and t r e a t m e n t a re a l l q u i t e complex (Hamburg e t a l , 1980). C l i e n t e d u c a t i o n has become an i n t e g r a l p a r t of the management of d i a b e t e s , n e c e s s i t a t e d because c l i e n t i s p a r t i c i p a t i n g i n her own h e a l t h c a r e . S i n c e the d i s c o v e r y o f i n s u l i n i n 1921, p h y s i c i a n s have taught t h e i r p a t i e n t s w i t h d i a b e t e s t o take t h e i r i n s u l i n , watch t h e i r d i e t and e x e r c i s e r e g u l a r l y ( E t z w i l e r , 1984). I n t e r e s t i n d i a b e t e s e d u c a t i o n surged i n the 1950's when h e a l t h e d u c a t o r s b e l i e v e d t h a t c l i e n t s were h a v i n g d i f f i c u l t y due to a l a c k o f fundamental knowledge 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 ' u n d e r s t a n d i n g o f d i a b e t e s e d u c a t i o n remains a r r e s t e d a t t h i s stage ( E t z w i l e r , 1984). P r a c t i t i o n e r s o f t e n p l a n e d u c a t i o n a l i n t e r v e n t i o n s w i t h o u t c o n s u l t i n g the l e a r n e r (Johnson, 1982) and the a f f e c t i v e a s p e c t s a re f r e q u e n t l y not c o n s i d e r e d 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 p l a n . D i a b e t e s e d u c a t i o n programs today r e l y on i n p u t from h e a l t h c a r e 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 , supplemented by a u d i o - v i s u a l i n s t r u c t i o n . E t z w i l e r (1983) has i d e n t i f i e d the d i f f e r e n t l e v e l s of i n f o r m a t i o n t o be i n c l u d e d i n d i a b e t e s e d u c a t i o n programmes. These a r e : 1 8 (1) Acute i n f o r m a t i o n which i s e s s e n t i a l for the p r o t e c t i o n of l i f e and p r e v e n t i o n o f acute c o m p l i c a t i o n s , i . e . s u r v i v a l . 2. In -depth i n f o r m a t i o n to m a i n t a i n h e a l t h , prevent l o n g -term c o m p l i c a t i o n s and p r o v i d e for o p t i m a l f u n c t i o n i n g o f a l l 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 wi th a c o n c e p t u a l u n d e r s t a n d i n g o f the c o n d i t i o n ; wi th the a b i l i t y to m a i n t a i n the regimen and l i f e s t y l e wi th o p t i m a l f l e x i b i l i t y . Which i n f o r m a t i o n f i t s where depends on i n d i v i d u a l ' s c h a r a c t e r i s t i c s and c i r c u m s t a n c e s . There needs to be c a r e f u l assessment and g o a l - s e t t i n g as a c o l l a b o r a t i v e a c t i v i t y between c l i e n t s and p r a c t i t i o n e r s f o r t h i s f i t to occur ( R e s l e r , 1983). The t r a d i t i o n a l and the e d u c a t i o n a l approaches to d i a b e t e s management were d i s c u s s e d i n Chapter One. The p r a c t i t i o n e r ' s approach to c l i e n t - c l i n i c i a n communication has g r e a t e r impact than the use of s p e c i f i c e d u c a t i o n a l methods or t echniques (Anderson , 1985). Simply u s i n g newer e d u c a t i o n a l methods to implement the t r a d i t i o n a l medica l approach to care does not guarantee that the c l i e n t ' s frame of r e f e r e n c e w i l l be taken i n t o c o n s i d e r a t i o n . Hea l th p r o f e s s i o n a l s understand the medica l aspects o f d i a b e t e s : what i t i s , how common i t i s , i t s symptoms, i t s c o m p l i c a t i o n s and the t echn iques of management; but a gap e x i s t s i n t h e i r knowledge of what i t i s l i k e to a c t u a l l y l i v e wi th d i a b e t e s (Maclean and Oram, 1985). I t i s impor tant to unders tand the impact of d i a b e t e s on o r d i n a r y l i v i n g and the impact of o r d i n a r y s t r e s s e s on d i a b e t e s (Glasgow, 1983). 1 9 Medical l i t e r a t u r e has j u s t r e c e n t l y addressed the i s s u e of l i v i n g with diabetes and what i t i s r e a l l y l i k e (Maclean and Oram, 1985). THE HERMENEOTIC MODEL OF CLINICAL PRACTICE C o n s t r u c t i o n of the I l l n e s s Experience Only our c o n s t r u c t s of i l l n e s s can be known to us, not the i l l n e s s e s themselves. (Boulding, 1976) Disease and i l l n e s s are ex p l a n a t o r y concepts, not e n t i t i e s (Kleinman, 1983). We can only understand how people act i n r e l a t i o n to i l l n e s s , i f we understand t h e i r i n t e r p r e t a t i o n s of i t (Gurwitsch, 1954). I l l n e s s i s shaped by c u l t u r a l f a c t o r s governing p e r c e p t i o n , l a b e l l i n g , e x p l a n a t i o n and v a l u i n g (Kleinman, 1978). Good and Good (1981) have suggested a meaning-centered approach to understanding c l i n i c a l p r a c t i c e s i n c e i l l n e s s can be considered to be fundamentally semantic and a l l c l i n i c a l t r a n s a c t i o n s are fundamentally hermeneutic or i n t e r p r e t i v e . The value of the i n t e r p r e t i v e model i s t h r e e f o l d : i t deals with i s s u e s of concern to the p a t i e n t p o o r l y managed u s i n g t r a d i t i o n a l pathology models; the method f o r p a t i e n t education becomes understood as a t r a n s l a t i o n across models; and t h i s approach provides an approach to n e g o t i a t i o n of t h e r a p e u t i c a l l i a n c e s and the c o g n i t i v e aspects of h e a l i n g (Good and Good, 1981). 2 0 The d i a b e t e s regimen r e q u i r e s the performance of many s p e c i f i c b e h a v i o u r s , t h e r e f o r e i t i s not s u r p r i s i n g t h a t s t u d i e s r e v e a l d i s t u r b i n g l y low l e v e l s o f compliance (Becker and J a n z , 1985). S o c i a l l e a r n i n g t h e o r i e s p o i n t out i m p o r t a n t v a r i a b l e s i n f l u e n c i n g adherence: an i n d i v i d u a l ' s knowledge, b e l i e f s about h i s or her a b i l i t y to perform c e r t a i n b e h a v i o u r s and t h e i r v a l u e ; and s k i l l s or c a p a b i l i t i e s a v a i l a b l e to d e a l w i t h p r o b l e m a t i c s i t u a t i o n s ; and i n c e n t i v e s (or l a c k o f ) f o r engaging i n p a r t i c u l a r b e h a v i o u r s (Glasgow and McCaul, 1982). Glasgow and McCaul emphasized the i n t e r a c t i o n between these v a r i a b l e s , i m p l y i n g a need f o r the development of s p e c i f i c i n t e r v e n t i o n s t r a t e g i e s . Much of non-compliance can be a t t r i b u t e d to poor c l i e n t - c l i n i c i a n communication because of d i s c r e p a n c i e s between the p a t i e n t ' s view and the b i o m e d i c a l model (Becker and Maiman, 1975). The b i o m e d i c a l model t h a t has shaped modern medicine f o c u s e s on the b i o l o g i c a l - r e d u c t i v i s t paradigm i g n o r i n g s o c i o c u l t u r a l frameworks of b e l i e f and a c t i o n ( M i s h l e r , 1981). Good (1977) and Kleinman (1981) have r e j e c t e d the p h y s i c a l r e d u c t i o n i s m i n h e r e n t i n the b i o m e d i c a l model c l a i m i n g t h a t h e a l t h and i l l n e s s are s o c i a l as w e l l as b i o l o g i c a l c o n c e p t s . E m o t i o n a l , p s y c h o s o c i a l and f a m i l i a l f a c t o r s a l s o i n f l u e n c e the c o u r s e of s i c k n e s s and s h o u l d not be i g n o r e d s i n c e a n x i e t y , f e a r , dependency and anger p l a y a major r o l e i n l e a r n i n g and compliance ( P e t e r s , 1980). 2 1 Communication Between C l i e n t and C l i n i c i a n M e d i c a l knowledge i s i n t e r p r e t e d by the p a t i e n t i n terms of t h e i r own views of c l i n i c a l r e a l i t y , o f t e n o u t s i d e the d o c t o r ' s awareness, r e s u l t i n g i n a marked d i s t o r t i o n of the d o c t o r ' s e x p l a n a t i o n and the treatment regimen p r e s c r i b e d (Kleinman et a l , 1978). J o i n t p a r t i c i p a t i o n i n symptom d e f i n i t i o n and treatment a c t i o n i s c r u c i a l to j o i n t c o n s t r u c t i o n of c l i n i c a l r e a l i t y . P r a c t i t i o n e r - p a t i e n t c o l l a b o r a t i o n i n t h i s process i s not only i n d i c a t i v e of success i n the management of the case , but p r o v i d e s as w e l l o p p o r t u n i t i e s h e a l t h - p r o m o t i n g e d u c a t i o n . I n s t e a d of h i d i n g behind m e d i c a l j a r g o n t h a t p r o t e c t s the p h y s i c i a n from involvement i n the p a t i e n t ' s l i f e , med ica l knowledge should be shared and n e g o t i a t e d : i n c r e a s i n g the p a t i e n t ' s r e p e r t o i r e of h e a l t h b e l i e f s and a l l o w i n g f o r p o t e n t i a l l y maladapt ive b e l i e f s to be a l t e r e d w h i l e p r o v i d i n g knowledge that g ive s the p a t i e n t g r e a t e r conf idence i n what symptoms to l o o k f o r when d e c i d i n g on f u t u r e c o n s u l t a t i o n s (Chrisman and Kle inman , 1983). I n d i v i d u a l s o f t en develop p e r s o n a l and h i g h l y i d i o s y n c r a t i c models o f t h e i r i l l n e s s (Good and Good, 1981). G a i n i n g i n s i g h t i n t o p a t i e n t s ' c o n s t r u c t s condenses a network of s i g n i f i c a n t e x p e r i e n c e s and symbols tha t the c l i n i c i a n must e l i c i t i n o r d e r to understand the context of the c l i e n t ' s behaviour (Kle inman , 1986). Anthropo logy and the i n t e r p r e t i v e s o c i a l s c i e n c e s p r o v i d e t o o l s f o r semantic and hermeneut ic a n a l y s i s o f i l l n e s s r e a l i t i e s and t h e r a p e u t i c i n t e r a c t i o n s . Kle inman (1978) endorsed E n g l e h a r d t ' s view of d i s e a s e and i l l n e s s 22 as r e l a t i o n s h i p s and e l a b o r a t e d the e x p l a n a t o r y model concept. T h i s s o c i a l model i s more open to the concept of i l l n e s s t han the o r t h o d o x b i o m e d i c a l model. K l e i n m a n 1 s (1986) a n a l y t i c a l g r i d o u t l i n e s f o u r types or l a y e r s of meaning i n i l l n e s s : 1) The f i r s t l e v e l (symptoms qua symptoms) i n v o l v e s an i n t e r p r e t a t i o n o f symptoms and d i a g n o s i s of d i s e a s e ; the i d i o m s of p a i n and d i s t r e s s . Symptoms don't r e f l e c t s o m a t i c a b n o r m a l i t i e s i n any s i m p l e way (Good and Good, 1981). The s e m a n t i c s of symptoms form a s y m b o l i c network w h i c h v a r i e s i n d i f f e r e n t c u l t u r e s ( f o r example, c o v e r i n g the c l a s s i c ' d e n i a l ' of i l l n e s s ) . E i g h t y per cent (80%) o f d i a g n o s e s are made s o l e l y from the c l i e n t ' s h i s t o r y and no deeper meaning i s e l i c i t e d , d e l i g i t i m i z i n g the p e r s o n a l meaning of i l l n e s s . 2) The second l a y e r i s the c u l t u r a l s i g n i f i c a n c e t h a t b r i n g s meaning to i l l n e s s e s o f a s t i g m a t i z i n g n a t u r e . T h i s i s e v i d e n t where t h e r e 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 over the i l l n e s s , f o r i n s t a n c e cancer or A.I.D.S. The views o t h e r s have of s i c k n e s s may be d i s t o r t e d , adding to the burden of the i l l n e s s . Kleinman f e e l s t h a t Sontag (1977) f o c u s e d on t h i s l e v e l and missed the o t h e r meanings of i l l n e s s . 3) The t h i r d l a y e r d e s c r i b e s the s i g n i f i c a n c e of c h r o n i c i l l n e s s as p a r t of one's l i f e w o r l d i n which o t h e r problems become imbedded. T h i s i s p r e v a l e n t where the s i c k n e s s o s c i l l a t e s between r e m i s s i o n and e x a c e r b a t i o n . In the p r o c e s s of l a b e l l i n g and e x p l a i n i n g s i c k n e s s , symptoms are a m p l i f i e d (Chrisman and Kleinman, 1983). Other symptoms are absorbed l i k e a sponge, a f f e c t i n g one's sense of mourning or c o n t r o l . Treatment of the 23 i l l n e s s r e q u i r e s r e s p o n d i n g to the c l i e n t ' s p s y c h o s o c i a l d i s t r e s s as w e l l as p h y s i c a l c o m p l a i n t s . 4) The f o u r t h l e v e l i s the e x p l i c i t e x p l a n a t o r y model (EM) of i l l n e s s or o v e r t s e l f - k n o w l e d g e . E x p l a n a t o r y models are the main v e h i c l e for the c l i n i c a l c o n s t r u c t i o n o f r e a l i t y (Kle inman , 1980). E x p l a n a t o r y models seek to answer f i v e major q u e s t i o n s f o r i l l n e s s e p i s o d e s : the (1) e t i o l o g y ; (2) onset of symptoms; (3) p a t h o p h y s i o l o g y ; (4) course of s i c k n e s s ; and (5) treatment (Kle inman, 1978). E x p l a n a t o r y models (EMs) are h e l d by both p a t i e n t s and p r a c t i t i o n e r s i n a l l h e a l t h care systems and t r a n s a c t i o n between models i s a c e n t r a l i s s u e i n the c l i n i c a l encounter (Kle inman 1978, 1980) . EMs o f f e r e x p l a n a t i o n s o f s i c k n e s s and t r e a t m e n t to guide cho i ce s among a v a i l a b l e t h e r a p i e s and cast p e r s o n a l and s o c i a l meaning on the exper i ence of s i c k n e s s . An e x p l a n a t o r y model i s p a r t l y c o n s c i o u s and p a r t l y o u t s i d e of awareness . An EM i s based on a c o g n i t i v e system that d i r e c t s r e a s o n i n g a l o n g c e r t a i n l i n e s . Both p r a c t i t i o n e r and p o p u l a r EMs are l a r g e l y t a c i t and not coherent or unambiguous. C a t e g o r i z a t i o n of popu lar EMs a t t r i b u t e s to them more formal o r g a n i z a t i o n and s p e c i f i c i t y than they u s u a l l y possess . I t i s c h a r a c t e r i s t i c o f EMs that they undergo change f a i r l y f r e q u e n t l y ; and popu lar EMs are r a r e l y i n v a l i d a t e d by e x p e r i e n c e . The ' d i f f u s e d ' nature of popu lar m e d i c a l knowledge c o n t r a s t s the ' i n s t i t u t i o n a l i z e d ' nature of p r o f e s s i o n a l and s p e c i a l i z e d f o l k m e d i c a l knowledge. D i s c r e p a n t e x p l a n a t i o n s of the s i c k n e s s can l e a d to communicat ion problems (Kle inman, 1980). 2 4 E x p l a n a t o r y models d i f f e r i n t h e i r a n a l y t i c power, l e v e l of a b s t r a c t i o n , l o g i c a l a r t i c u l a t i o n , metaphor and i d i o m . EMs are embedded i n l a r g e r c o g n i t i v e systems, which i n t u r n are anchored i n p a r t i c u l a r c u l t u r a l and s o c i a l s t r u c t u r a l arrangements, i . e . the h e a l t h c a r e system. EMs l e a d t o t h e r a p e u t i c o p t i o n s t h a t a re d i s s i m i l a r i n t e c h n o l o g i c a l 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 e f f i c a c y . E x p l a n a t o r y models employed by c l i n i c i a n s f r e q u e n t l y d i v e r g e c o n s i d e r a b l y from b i o m e d i c a l and o t h e r ' p r o f e s s i o n a l * t h e o r i e s i f they are to be p r a c t i c a l l y e f f e c t i v e ( K l e i n m a n , 1980). B i o m e d i c a l models are d i s e a s e o r i e n t e d , but when a p p l i e d by c l i n i c i a n s they may r e f l e c t c o n cern f o r i l l n e s s f a c t o r s as w e l l ( E n g e l , 1977). Only modern h e a l t h 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 c a pable of t r e a t i n g both d i s e a s e and i l l n e s s (Kleinman et a l , 1978). E x p l a n a t o r y models need t o be d i s t i n g u i s h e d from g e n e r a l b e l i e f s about s i c k n e s s and h e a l t h c a r e . These g e n e r a l b e l i e f s belong t o the h e a l t h i d e o l o g y of the d i f f e r e n t h e a l t h c a r e s e c t o r s and e x i s t independent of and p r i o r to g i v e n e p i s o d e s o f s i c k n e s s , whereas EMs need to be a n a l y z e d i n a c o n c r e t e s e t t i n g ( K l einman, 1980). P a t i e n t and f a m i l y EMs o f t e n do not possess s i n g l e r e f e r e n t s but r e p r e s e n t semantic networks t h a t l o o s e l y l i n k a v a r i e t y o f concepts and e x p e r i e n c e s (Good, 1977). E x p l a n a t o r y models i n t e r r e l a t e i l l n e s s b e l i e f s , norms, and e x p e r i e n c e s and f u n c t i o n as the c l i n i c a l g u i d e s to d e c i s i o n - m a k i n g . 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 , i t i s the e x p l a n a t o r y model (and the semantic s i c k n e s s network i t c o n s t i t u t e s and 25 expresses for a given sickness episode) that s o c i a l l y produces the 'natural history of i l l n e s s ' which unlike the 'natural history of disease' w i l l d i f f e r between health care systems. EM outcomes are the result of a transactional process likened to tr a n s l a t i o n between languages (Kleinman, 1980). C l i n i c a l techniques increase the p r a c t i t i o n e r ' s a b i l i t y to e l i c i t and analyze the meaning i l l n e s s has for the c l i e n t . E l i c i t a t i o n techniques i n the hermeneutic model include investigation of the c l i e n t ' s explanatory model and the 'decoding' of his semantic i l l n e s s network (Good and Good, 1981). In c l i n i c a l transactions, practitioners commonly do not e l i c i t the patient EM but spontaneously transmit at least part of their EM (Kleinman, 1980). Kleinman et al (1978) proposed a process for f a c i l i t a t i n g understanding between the c l i e n t and c l i n i c i a n . E l i c i t i n g the c l i e n t model gives the p r a c t i t i o n e r knowledge of the b e l i e f s held about his i l l n e s s , the personal and s o c i a l meaning he attaches to his disorder, his expectations about what w i l l happen to him and what the p r a c t i t i o n e r w i l l do, and his own therapeutic goals. The f i r s t step i n this process i s for the practitioner to obtain a miniethnography using an 'empathic witnessing' technique to enter the c l i e n t ' s world to understand the disease experience. It i s important to demonstrate this interest since c l i e n t s most often f a u l t p r a c t i t i o n e r s for t h e i r lack of understanding. There i s no •cut and dried' set of questions to be used. Following this e l i c i t a t i o n , one EM i s analyzed i n terms of another. Comparison of the c l i e n t model with the practitioner's 26 model en a b l e s the p r a c t i t i o n e r to i d e n t i f y major d i s c r e p a n c i e s t h a t may cause problems f o r c l i n i c a l management. Such comparisons h e l p the c l i n i c i a n know which a s p e c t s of h i s e x p l a n a t o r y model need c l e a r e r e x p o s i t i o n to c l i e n t s (and f a m i l i e s ) and what s o r t of c l i e n t e d u c a t i o n i s most a p p r o p r i a t e . Comparisons a l s o c l a r i f y c o n f l i c t s i n v a l u e s and i n t e r e s t s . The next s t e p i n the c l i n i c a l p r o c e s s i n v o l v e s n e g o t i a t i o n s between these e x p l a n a t o r y models, once they have been made e x p l i c i t . Hence, the a n a l y z e d EM i s t r a n s f e r r e d i n t o the o t h e r EM, which i s c o n s e q u e n t l y r e s t r u c t u r e d i n the new language. The r e s t r u c t u r e d EM can p o t e n t i a l l y i n f l u e n c e the EMs of the o t h e r a c t o r s (Kleinman e t a l , 1978; Kleinman, 1980). The EM framework suggests t h a t t h e r e are ways t o e v a l u a t e the q u a l i t y and s u c c e s s of at l e a s t one c l i n i c a l t a s k : communication w i t h c l i e n t s (Kleinman, 1980). The i n t e r a c t i o n between the e x p l a n a t o r y models of c l i e n t s and p r a c t i t i o n e r s i s a key component of h e a l t h c a r e . Through an u n d e r s t a n d i n g and 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 care p r o v i d e r s and c l i e n t s can r e a c h shared 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 care p l a n s which can be n e g o t i a t e d to be a p p r o p r i a t e to the p h y s i c a l and e m o t i o n a l needs of c h i l d r e n w i t h d i a b e t e s . 27 I I I . PSYCHOLOGICAL CONTEXT OF THE STUDY There i s no s i n g l e i n t e g r a t i v e t h e o r y f o r the p s y c h o s o c i a l i s s u e s i n d i a b e t e s . A c c o r d i n g t o the 'Theory of Reasoned A c t i o n ' ( A j z e n and F i s h b e i n , 1980) people a c t r a t i o n a l l y and make s y s t e m a t i c use o f the i n f o r m a t i o n a v a i l a b l e to them. S e v e r a l models have been used to e x p l a i n h e a l t h b e l i e f s and h e a l t h d e c i s i o n - m a k i n g (see f o r example, Becker and Maiman, 1975). These models propose t h a t s e l f - i n t e r e s t connects t h i n k i n g and f e e l 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 . L e a r n e r s who u n derstand t h i s can 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 (Gowin, 1981). C h i l d r e n l e a r n what i t means to be ' d i a b e t i c * . The c a p a c i t y f o r making d i s c o v e r i e s depends on n a t u r a l a b i l i t y , f o s t e r e d by t r a i n i n g and guided by i n t e l l e c t u a l e f f o r t which i s a k i n to a r t i s t r y . 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 framework whether 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 which t r a n s f o r m s our ways of 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 of a t t u n i n g our 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 to what i s t r u e and r i g h t . O r n s t e i n (1972) To educate i s to change the meaning of human e x p e r i e n c e (Gowin, 1981). The newer concepts of t e a c h i n g , l e a r n i n g and e d u c a t i o n as a p p l i e d to the c l i e n t - c l i n i c i a n r e l a t i o n s h i p i n the t r e a tment of d i a b e t e s s 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 h a t " e d u c a t i o n i s h e l p i n g t o become independent". Communication s h o u l d i n t e g r a t e both the i n t e l l e c t u a l and e m o t i o n a l f e a t u r e s r e c o g n i z i n g t h a t the p r a c t i t i o n e r and l e a r n e r have a common 2 8 g o a l — combining 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 and P e l s e , 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 to c o n s t r u c t t h e i r own i d i o s y n c r a t i c meanings. P e r c e p t i o n s are c e n t r a l to l e a r n i n g a c c o r d i n g t o ' c o g n i t i v e l e a r n i n g t h e o r y ' where c o g n i t i v e s t r u c t u r e i s h i e r a r c h i c a l l y o r g a n i z e d concepts ( A u s u b e l , 1 9 6 3 ) . L e a r n i n g , f o r example a c q u i r i n g knowledge and problem s o l v i n g , which i n v o l v e s a p r o c e s s o f c o n c e p t u a l change. When new paradigms c h a l l e n g e the o l d , a s t a t e of r e v o l u t i o n a r y change r e s u l t s (Kuhn, 1 9 7 7 ) . L e a r n e r s o f t e n c o n f r o n t problems to be s o l v e d f o r which they l a c k s p e c i f i c a l l y r e l e v a n t concepts and s p e c i f i c a l l y r e l e v a n t l e a r n i n g e x p e r i e n c e s . Weak c o n c e p t u a l development i n one c o n t e n t a r e a may p r e c l u d e the 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 the l e a r n e r may not be aware of consequent changes i n meaning. L e a r n e r s must l e a r n to i s o l a t e and l a b e l r e c u r r i n g p a t t e r n s i n events and e x p e r i e n c e s ( i . e . form c o n c e p t s ) and to ge n e r a t e meaning by l i n k i n g c o ncepts 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 such c o n c e p t u a l u n d e r s t a n d i n g , new l e a r n i n g proceeds 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 remain u n i n t e l l i g i b l e or m i s i n t e r p r e t e d (Gowin, 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 the c o g n i t i v e development of c h i l d r e n was p r o v i d e d by Jean P i a g e t ' s n o t i o n s of r e a l i t y and how these were r e l a t e d t o b e h a v i o u r . P i a g e t c o n t r i b u t e d t o the debate on the sources o f language and mental s t r u c t u r e s through h i s ' g e n e t i c e p i s t e m o l o g y 1 approach. P i a g e t ( 1 9 6 9 ) viewed c h i l d r e n as b u i l d e r s of t h e i r own i n t e l l e c t u a l 2 9 s t r u c t u r e s , l e a r n i n g wi thout be ing t a u g h t , ready and capable of t a l k i n g about a n y t h i n g i n t h e i r own e x p e r i e n c e . P i a g e t ' s framework i n c l u d e s the development of p e r c e p t i o n , a b s t r a c t i o n and c o g n i t i o n as the key to the c o n s t r u c t i o n of p r i m i t i v e , but a s e l f - c o n f i d e n t w o r l d . P i a g e t e x p l a i n e d why c h i l d r e n ask q u e s t i o n s and i n t e r p r e t i n f o r m a t i o n i n ways tha t may seem s trange to a d u l t s . A s h i f t i n r e s e a r c h emphasis has o c c u r r e d from a n a l y z i n g o p e r a t i o n s , i n the P i a g e t i a n t r a d i t i o n , to i n t e r p r e t i n g the nature of knowledge a c q u i r e d or a p p l i e d by c h i l d r e n i n e d u c a t i o n a l s e t t i n g s . S e v e r a l d i r e c t i o n s i n recen t s c i e n c e e d u c a t i o n r e s e a r c h p o i n t to the importance of content i n c o g n i t i v e s t r u c t u r e s ( A u l t , Novak and Gowin, 1984). Knowledge and c o g n i t i v e s t r u c t u r e s converge on the same event a s c r i b i n g meaning to exper ience ( A u l t , Novak and Gowin, 1984). S ince people are not normal ly aware of the l i n e s a long which they t h i n k and a c t , one can l o o k at language to i d e n t i f y a c o n c e p t u a l system. Language i s a unique and powerful s t r a t e g y for knowing i n i t s own r i g h t . The i n d i v i d u a l i t y and r a t i o n a l i t y observed i n the s t r u c t u r e of what c h i l d r e n know have been d e s c r i b e d a s : ' p r e c o n c e p t i o n s ' ( A u s u b e l , 1968); ' a l t e r n a t e c a u s a l frameworks' ( D r i v e r , 1973); and ' p r e - i n s t r u c t i o n a l c o n c e p t i o n s ' (Champagne, 1980). A key p e d a g o g i c a l q u e s t i o n becomes, "How can we best work wi th c h i l d r e n so that they may use language e f f e c t i v e l y to know?" Metaphors are o f t e n used to e x p l a i n new c o n c e p t s . L a k o f f and Johnson (1980) a s s e r t e d tha t our c o n c e p t u a l system i s 30 fundamenta l ly m e t a p h o r i c a l . Metaphors o r g a n i z e e n v i r o n m e n t a l i n p u t and r e o r g a n i z e ideas ( L a b i n o w i c z , 1980) . The essence of a metaphor i s to unders tand and exper i ence one k i n d o f t h i n g i n terms of a n o t h e r . Metaphors are not j u s t a matter o f language and mere words , but m o d a l i t i e s of e x p e r i e n c e ( L a k o f f and Johnson , 1980). Metaphors are i m p l i e d comparisons of what i l l n e s s i s l i k e r e v e a l i n g an i d i o s y n c r a t i c p e r s p e c t i v e . Metaphors are implied comparisons that occur at a p r e - r e f l e c t i v e l e v e l of e x p e r i e n c e and are s t a t e d wi thout t h e m a t i z a t i o n (Kugelmann, 1983). The metaphor i s the major way i n which c l i n i c a l e x p e r i e n c e s are g i v e n shared meanings, a l though m e t a p h o r i c a l language can c o n t r i b u t e to m i s u n d e r s t a n d i n g between c l i e n t and c l i n i c i a n s . Metaphors p r o v i d e a f l u i d and dynamic way to approach d i s c r e p a n c i e s between models o f i l l n e s s and treatment a v a i l a b l e to those ' h a v i n g to t a k e ' and ' h a v i n g to g i v e ' m e d i c a t i o n (Rhodes, 1984) . Any a n a l o g y must be used j u d i c i o u s l y . For example, only wi th a c h i l d who understands the mechanics of combust ion might one choose an analogy o f f u e l and a i r i n comparison wi th g lucose and i n s u l i n ( W h i t t , 1979). In o r d e r to share the meaning d i a b e t e s h o l d s f o r c h i l d r e n , i t i s a p p r o p r i a t e to f i r s t i d e n t i f y what they know. 3 1 IV. CHILDREN * S UNDERSTANDING OF ILLNESS C h i l d r e n today seem to d i s p l a y a g r e a t e r s o p h i s t i c a t i o n and awareness w i t h r e g a r d to t h e i r environment ( G r a t z and P i l i a v i n , 1 9 8 0 ) . The c h i l d ' s c o n c e p t u a l i z a t i o n of i l l n e s s p r e s e n t s a complex i n t e r p l a y o f both a f f e c t i v e and c o g n i t i v e components, both at the p e r s o n a l and f a m i l y l e v e l s ( W h i t t , 1 9 7 9 ) . The i l l n e s s e x p e r i e n c e of a c h i l d i s p r o j e c t e d onto a p s y c h o l o g i c a l s u b s t r a t e of l i m i t e d c o g n i t i v e and language a b i l i t i e s , h e i g h t e n e d concerns about body i n t e g r i t y and a p r o p e n s i t y t o f i l l v o i d s i n knowledge w i t h i d i o s y n c r a t i c i n t e r p r e t a t i o n s ( K e s s l e r , 1 9 6 6 ) . How a c h i l d a n t i c i p a t e s the onset of i l l n e s s or i n t e g r a t e s the a c t u a l e x p e r i e n c e seems to be both i n d i v i d u a l l y and c u l t u r a l l y d e t ermined. In p r o f e s s i o n a l l y d e a l i n g w i t h c h i l d r e n who are e i t h e r a c u t e l y or c h r o n i c a l l y i l l i t i s i m p o r t a n t to c o n s i d e r t h e i r p r i o r c o n c e p t i o n s (or m i s c o n c e p t i o n s ) i n o r d e r to f a c i l i t a t e care ( G r a t z and P i l i a v i n , 1 9 8 0 ) . N a t a p o f f ' s i n t e r v i e w s w i t h h e a l t h y c h i l d r e n i n d i c a t e d t h a t c h i l d r e n see h e a l t h 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 them to p a r t i c i p a t e i n d e s i r e d a c t i v i t i e s ; t h a t a person i s h e a l t h y i f he can do what he wants to do. C h i l d r e n p e r c e i v e h e a l t h and i l l n e s s as two d i f f e r e n t concepts r a t h e r than on a continuum as o f t e n c i t e d i n the l i t e r a t u r e ( N a t a p o f f , 1 9 7 8 ) U t i l i z i n g the t h e o r i e s of Jean P i a g e t and Heinz Werner, r e s e a r c h e r s have examined the devel o p m e n t a l o r d e r of c h i l d r e n ' s c o n cepts of h e a l t h and i l l n e s s . C h i l d r e n ' s c o n c e p t i o n s of the body i n t e r i o r b e g i n w i t h g l o b a l awareness and develop by 32 i n c r e a s i n g d i f f e r e n t i a t i o n from a s t a t e of r e l a t i v e g l o b a l i t y and l a c k o f d i f f e r e n t i a t i o n to a s t a t e of i n c r e a s i n g s o p h i s t i c a t i o n ( C r i d e r , 1 9 8 1 ) . C h i l d r e n ' s e x p l a n a t i o n s of cause of i l l n e s s c o rresponded to P i a g e t i a n s t a g e s o f c o g n i t i v e development ( B i b a c e and Walsh, 1981; B r e w s t e r , 1 9 8 2 ) . Older 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 number of e x t e r n a l causes ( G r a t z and P i l i a v i n , 1 9 8 0 ) . With i n c r e a s i n g age, c h i l d r e n d e f i n e d i l l n e s s more s p e c i f i c a l l y w i t h r e f e r e n c e s to a l t e r a t i o n s i n c o n v e n t i o n a l r o l e b e h a v i o u r ( C a m p b e l l , 1 9 7 5 ) . An i n v e s t i g a t i o n o f the i n t e n t of m e d i c a l p r o c e d u r e s and r o l e of the m e d i c a l s t a f f r e v e a l e d t h a t c h i l d r e n p r o c e s s i n f o r m a t i o n about t h e i r i l l n e s s e s t h r o ugh a p r e d i c t a b l e t h r e e - s t a g e sequence of c o n c e p t u a l development ( B r e w s t e r , 1 9 8 2 ) . Brewster ( 1 9 8 2 ) urged m e d i c a l s t a f f to address t h i s m a t u r a t i o n a l 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 r e s e a r c h has been done r e g a r d i n g the n a t u r e of c h i l d r e n ' s knowledge of d i a b e t e s and what i t i s l i k e to be a c h i l d l i v i n g w i t h d i a b e t e s . V. CHILDREN AND DIABETES A g r e a t d e a l i s demanded of c h i l d r e n who have c h r o n i c i l l n e s s and demands o f t e n exceed the c h i l d r e n ' s c a p a c i t y to u n d e r s t a n d ( A l l e n e t a l , 1 9 8 4 ) . C h i l d r e n w i t h d i a b e t e s cannot f a c e i n f o r m a t i o n about d i a b e t e s i n the n e u t r a l way t h a t c h i l d r e n l e a r n i n s c h o o l ( R i i s e t a l , 1 9 8 2 ) . To f a c i l i t a t e c o g n i t i v e and a f f e c t i v e u n d e r s t a n d i n g , h e l p i n g p r o f e s s i o n a l s must be a t t u n e d 33 to the 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 p e r c e i v e t h e i r d i a b e t e s and concerned w i t h t h e i r c l i e n t s 1 p a r t i c u l a r u n d e r s t a n d i n g of d i a b e t e s . What the c h i l d w i t h d i a b e t e s has to put up w i t h depends on h i s or her age. At age 5, the c h i l d knows i t i s wrong t o c h e a t ; i n j e c t i o n s , g i v e n by l o v e d ones, c o n t i n u e and a r e p a i n f u l ; sweets, equated w i t h l o v e and a p p r o v a l , a re 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 the c h i l d f e e l r e j e c t e d . By age 10, the c h i l d can u n d e r s t a n d , but not l i k e i n j e c t i o n s ; can u n d e r s t a n d and accept the d i e t . By age 11 or 12, the c h i l d t h i n k s i n t o the f u t u r e ( C r a i g , 1982). The 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 a s p e c t s of the e x p l a n a t o r y models of i l l n e s s i n o r d e r to h i g h l i g h t c u r r e n t knowledge. C h i l d r e n ' s Ideas about the Cause o f I l l n e s s D i a b e t e s i s a heterogeneous d i s o r d e r t h a t i s o n l y p a r t l y u n d e r s t o o d hence i t i s not p o s s i b l e to p r o v i d e s a t i s f a c t o r y e x p l a n a t i o n s f o r why i t o c c u r s . A c h i l d may f e e l t h a t he i s be i n g punished f o r b e i n g 'bad* or may b e l i e v e t h a t i f he had o n l y a v o i d e d candy he would not have d i a b e t e s . S i n c e h e r e d i t a r y f a c t o r s a re i m p l i c a t e d , p a r e n t s may f e e l g u i l t y and de p r e s s e d , blaming themselves f o r t h e i r c h i l d ' s i l l n e s s (Johnson and Rosenbloom, 1982). 34 C h i l d r e n ' s Ideas about the Course of D i a b e t e s Most y o u n g s t e r s seem to a d e q u a t e l y cope w i t h d i a b e t e s , a l t h o u g h some have c o n s i d e r a b l e d i f f i c u l t y (Johnson, 1980). O v e r p r o t e c t i o n by p a r e n t s or too e a r l y a l l o c a t i o n of r e s p o n s i b i l i t i e s may c o n t r i b u t e to s i g n i f i c a n t p s y c h o s o c i a l problems, f r e q u e n t l y l e a d i n g t o the development of ' b r i t t l e ' d i a b e t e s ( C r a i g , 1982). I l l n e s s does not s i g n i f i c a n t l y change c h i l d r e n ' s knowledge o f h e a l t h and i l l n e s s , but may a f f e c t t h e i r a t t i t u d e s and b e l i e f s about i l l n e s s ( E i s e r , 1983). E a r l y r e s e a r c h i n d i c a t e d t h a t d i a b e t i c boys and g i r l s c o n s i d e r t h e i r d i s o r d e r as a normal p a r t of t h e i r l i v e s and do not comprehend the s e r i o u s n e s s of t h e i r d i s o r d e r . These c h i l d r e n d i d not f e e l d i a b e t e s or i t s t r e a t m e n t i n t e r f e r e d s i g n i f i c a n t l y w i t h t h e i r d a i l y a c t i v i t i e s o r a d v e r s e l y a f f e c t e d t h e i r o c c u p a t i o n a l , e d u c a t i o n a l or m a r i t a l g o a l s ( D a v i s , 1965). Recent s t u d i e s found c h i l d r e n to be knowledgeable about d i a b e t e s and what i s expected i n management; a c t i v e l y p a r t i c i p a t i n g i n t h e i r c a r e (Brown, 1983; A l l e n e t a l , 1984). A l t h o u g h many c h i l d r e n seem to have h e a l t h y a t t i t u d e s about themselves and t h e i r d i a b e t e s , a number of problems have appeared. Johnson and Rosenbloom (1982) found t h a t some c h i l d r e n f e e l s t i g m a t i z e d by the d i s e a s e when c h i l d r e n tease or a d u l t s t r e a t them d i f f e r e n t l y . I n some c h i l d r e n f e e l i n g s o f b e i n g ' d i f f e r e n t ' r e s u l t i n lowered s e l f - e s t e e m and avoidance or d i s t r u s t i n 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 s . Other c h i l d r e n l e a r n to use t h e i r • s p e c i a l n e s s ' i n a m a n i p u l a t i v e f a s h i o n w i t h p a r e n t s and t e a c h e r s . In a d d i t i o n , noncompliance w i t h one or more aspec t s of the p r e s c r i b e d management program i s very common. The p r e a d o l e s c e n t c h i l d i s p r e s e n t - o r i e n t e d ; t h r e a t s of c o m p l i c a t i o n s i n the f u t u r e have no r e l e v a n c e . As c h i l d r e n develop they become i n c r e a s i n g l y ab le to unders tand d i a b e t e s . T h i s c o g n i t i v e development a l s o b r i n g s the a b i l i t y to grasp the meaning o f a poor p r o g n o s i s or f u n c t i o n a l l i m i t a t i o n s , which may take an emot iona l t o l l on the youngster C h i l d r e n wi th more advanced d i sease concepts w o r r i e d more about t h e i r d i a b e t e s . C h i l d r e n b e l i e v e d that t h e i r parents worry p r i m a r i l y about c u r r e n t management of the d i s e a s e , s u g g e s t i n g tha t y o u n g s t e r s ' concerns about the f u t u r e are d i f f i c u l t to d i s c u s s at home ( A l l e n et a l , 1984). A c c o r d i n g to Bierman and Toohey (1980) , when a c h i l d has d i a b e t e s , management d i f f i c u l t i e s i n c r e a s e g e o m e t r i c a l l y by the number of f a m i l y members i n v o l v e d . I t i s w e l l documented t h a t d i a b e t i c c o n t r o l i s a l t e r e d d i r e c t l y or i n d i r e c t l y by s t r e s s . C h i l d r e n wi th d i a b e t e s e x p e r i e n c e h igher l e v e l s o f a n x i e t y , d e p r e s s i o n , f a m i l y problems and i n t e r p e r s o n a l c o n f l i c t s than t h e i r peers ( G r o s s , 1983). Researchers have p o i n t e d out the need to be aware of gender d i f f e r e n c e s w i th r e g a r d to cop ing wi th i l l n e s s ; and the e s t a b l i s h m e n t of peer group r e l a t i o n s h i p s . A d o l e s c e n t g i r l s more c l o s e l y a l i g n f e e l i n g s about s e l f and t h e i r own e f f i c a c y to the degree of c o n t r o l o f t h e i r d i a b e t e s , whereas boys d i s c o n n e c t or deny the r e l e v a n c e of d i a b e t e s e f f i c a c y to s e l f - e s t e e m (Grossman et a l , 1983). Work done by Nathan et a l (1984) r e c o n f i r m e d p r e v i o u s f i n d i n g s tha t c h i l d r e n wi th d i a b e t e s have d i f f i c u l t i e s i n e s t a b l i s h i n g peer group 36 r e l a t i o n s h i p s due to a sense of 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 of s t r e s s i n c h i l d r e n w i t h d i a b e t e s (Kosub and Kosub, 1982) emphasized the need to d e s i g n i n s t r u m e n t s f o r c h i l d r e n . E x a m i n a t i o n of the r e l a t i o n s h i p between 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 suggested the importance of f o s t e r i n g s e l f - e s t e e m development (Gould, 1985). Sanglade (1981) found t h a t c h i l d r e n have a s t r o n g w i s h to erase the body and the i l l n e s s from t h e i r c o n s c i o u s n e s s ; thereby d e n y i n g themselves the p o s s i b i l i t y o f t a l k i n g about i t , or even i m a g i n i n g i t . The i l l n e s s i s not 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 not belong to t h e i r i n n e r w o r l d , i t does not l e a d to a p s y c h o l o g i c a l c o p i n g p r o c e s s . Something i n the s e l f i s broken and t r y i n g t o deny i t s v e r y e x i s t e n c e may r e s t o r e a good s e l f image (Sanglade, 1981). In t h i s v e i n , K o s k i (1982) u t i l i z e d measures of body images, combined w i t h e v a l u a t i o n s of p e r s o n a l i t y f e a t u r e s based on p s y c h i a t r i c i n t e r v i e w s and TAT s t o r i e s , w i t h o b s e r v a t i o n s on c h i l d r e n ' s d r awings. B e i n g d i a b e t i c , or becoming one, may i n t e r r u p t or t h r e a t e n t o i n t e r r u p t one's sense of i n v i g o r a t i n g sameness and c o n t i n u i t y . I n o r d e r to a t t a i n a p o s i t i v e d i a b e t i c i d e n t i t y the c h i l d has to f e e l d i a b e t e s as an i n t e g r a t e d p a r t of h e r s e l f . C h i l d r e n ' s U n d e r s t a n d i n g o f D i a b e t e s P a t h o p h y s i o l o g y H e a l t h e d u c a t o r s may u n d e r e s t i m a t e the c o m p l e x i t y of the d i a b e t e s management regime. S t u d i e s have shown t h a t p a t i e n t s 37 a c t u a l l y u n derstand 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 b e l i e v e (Johnson e t a l , 1982). C h i l d r e n w i t h d i a b e t e s are expected t o understand concepts i n a complex i n t e r r e l a t i o n s h i p - -the pancreas, i n s u l i n , b lood g l u c o s e c o n t r o l and d i a b e t i c c o m p l i c a t i o n s . The ne r v e s , l i v e r and pancreas are not commonly r e c o g n i z e d nor t h e i r f u n c t i o n s understood p r i o r to a d o l e s c e n c e . I n g e n e r a l , c h i l d r e n know l i t t l e about t h e s e organs which a r e not n e c e s s a r y t o t h e i r u n d e r s t a n d i n g o f t h e i r own b o d i e s and how they work ( C r i d e r , 1981). C h i l d r e n ' s U n d e r s t a n d i n g o f D i a b e t e s 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 as ' g i v e n s ' l i k e o t h e r h e a l t h r e l a t e d b e h a v i o u r s (Johnson and Rosenbloom, 1982). C h i l d r e n ' s and p a r e n t s ' knowledge of d i a b e t e s i s o f t e n s i m p l i s t i c ; l a c k i n g s u f f i c i e n t u n d e r s t a n d i n g o f the r e l a t i o n s h i p between i n s u l i n , i l l n e s s , e x e r c i s e and s t r e s s to make a c c u r a t e d a i l y management d e c i s i o n s . E d u c a t i o n a l e f f o r t s are o f t e n i n s u f f i c i e n t f o r the development of adequate home management s k i l l s and i n f o r m a t i o n i s 'known' but f o r g o t t e n (Johnson e t a l , 1982). An assessment o f the c o n c e p t u a l and b e h a v i o u r a l knowledge o f c h i l d r e n w i t h d i a b e t e s i n d i c a t e d t h a t t h e l e n g t h of time s i n c e d i a b e t e s was diagnosed was not r e l a t e d t o g e n e r a l u n d e r s t a n d i n g , problem s o l v i n g or s k i l l s . Knowledge i n one c o n t e n t a r e a was not p r e d i c t i v e of knowledge i n o t h e r a r e a s . V a r i a b l e s such as gender and age need t o be g i v e n f u r t h e r c o n s i d e r a t i o n i n the development and use of e d u c a t i o n a l programs (Johnson e t a l , 1982). C h i l d r e n who b e l i e v e 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 to be 3 8 more s e r i o u s exper i ence fewer b a r r i e r s to implement ing d a i l y c a r e , e s p e c i a l l y i n the area of d i e t management. What seems to i n t e r f e r e most i n m a i n t a i n i n g an e f f e c t i v e management programme are s i t u a t i o n s r e q u i r i n g p r o b l e m - s o l v i n g or a s s e r t i v e i n t e r p e r s o n a l s k i l l s . C h i l d r e n e x p e r i e n c i n g d i f f i c u l t y wi th care may be a ided by i n t e r v e n t i o n s f o r h a n d l i n g i n t e r p e r s o n a l s k i l l s and p r o b l e m - s o l v i n g (La G r e c a , 1983) E x p l a i n i n g d i a b e t e s once to a c h i l d i s not s u f f i c i e n t . I t i s e s s e n t i a l to assess a l l the c r i t i c a l a spec t s of home d i a b e t e s management to c o o r d i n a t e new i n f o r m a t i o n , r e i n f o r c e p r e v i o u s u n d e r s t a n d i n g and c o r r e c t m i s p e r c e p t i o n s or poor technique (Johnson et a l , 1982). As the youngs ter i s capable of i n c r e a s i n g l y s o p h i s t i c a t e d u n d e r s t a n d i n g , new q u e s t i o n s and concerns about d i a b e t e s w i l l s u r f a c e . The parent and p r a c t i t i o n e r must expect t h i s c o n t i n u e d q u e s t i o n i n g , r e p r o c e s s i n g and i n t e g r a t i o n from the c h i l d . H e l p i n g the c h i l d through t h i s process means communicating wi th her at her l e v e l of u n d e r s t a n d i n g . In a l l cases , answers should be as honest and a c c u r a t e as p o s s i b l e (Johnson and Rosenbloom, 1982). The e x i s t i n g l i t e r a t u r e has p o i n t e d out the need to i d e n t i f y what i t means to be a c h i l d wi th d i a b e t e s , hence t h i s i n v e s t i g a t i o n examining c h i l d r e n ' s p e r s o n a l b e l i e f s about d i a b e t e s was unde r take n . 39 CHAPTER THREE METHODS I . INTRODUCTION An e x p l o r a t o r y approach was used to focus on the phenomenology of d i a b e t e s from the c h i l d ' s p o i n t of v iew. T h i s chapter d i s c u s s e s aspec t s o f the methods used to make e x p l i c i t c h i l d r e n ' s p e r s p e c t i v e s of the d i a b e t e s e x p e r i e n c e : 1. Research Des ign 2. C h a r a c t e r i s t i c s o f the Sample 3. R a t i o n a l e for Techniques 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 I I . RESEARCH DESIGN The i n v e s t i g a t i o n was des igned to e l i c i t c h i l d r e n ' s c o n c e p t u a l i z a t i o n s o f d i a b e t e s and t h e i r i n t e r p r e t a t i o n of medica l knowledge about d i a b e t e s . An ' e t h n o g r a p h i c approach* was employed at a summer camp f o r c h i l d r e n wi th d i a b e t e s . C l i n i c a l i n t e r v i e w s were conducted f o l l o w i n g the camp to o b t a i n d e s c r i p t i o n s o f c h i l d r e n ' s s p e c i f i c problems, i s s u e s , f e e l i n g s , b e l i e f s and memories. An a n a l y s i s of d i a b e t e s as a meaning s t r u c t u r e was completed u s i n g a ' c o n c e p t u a l i n v e n t o r y ' of c h i l d r e n ' s b e l i e f s and a c l a s s i f i c a t i o n of v a r i a b l e s from the c o g n i t i v e and a f f e c t i v e domains. 40 C h a r a c t e r i s t i o s of the Sample C h i l d r e n aged 8 to 12 years from around B r i t i s h Columbia a t tended the Canadian D iabe te s A s s o c i a t i o n ' s Camp Kakhamela on Lake Cowichan d u r i n g J u l y 1985. A t o t a l of 99 campers, i n c l u d i n g 76 d i a b e t i c s , p a r t i c i p a t e d i n the s t u d y . Parents were asked by l e t t e r f o r p e r m i s s i o n to have t h e i r c h i l d r e n p a r t i c i p a t e (See Appendix Two). No r e f u s a l s were encountered . C h i l d r e n i n the study ranged from those who had been d i a b e t i c f o r j u s t two months to those who were d iagnosed before two y e a r s of age. A l l d i a b e t i c s had been h o s p i t a l i z e d at the time of d i a g n o s i s and many c h i l d r e n had v i v i d memories o f t h i s e x p e r i e n c e . C h i l d r e n ' s i n i t i a l u n d e r s t a n d i n g of d i a b e t e s and degree of dependence on parents (compared to self-management) v a r i e d and a l l had p a r t i c i p a t e d i n d i a b e t e s e d u c a t i o n programs at some s tage . Because programs d i f f e r throughout the p r o v i n c e c h i l d r e n ' s l e a r n i n g e x p e r i e n c e s were not u n i f o r m . C o n v e r s a t i o n s and a c t i v i t i e s o f c h i l d r e n wi th d i a b e t e s were noted by the i n v e s t i g a t o r . Campers v o l u n t e e r e d to p a r t i c i p a t e i n r o l e p l a y i n g a c t i v i t i e s , and c h i l d r e n wi th d i a b e t e s were as s igned to p l a y the ' d i a b e t i c s ' . Because of the nature of camp a c t i v i t i e s , u n i n t e r r u p t e d and c o n f i d e n t i a l i n t e r v i e w s were not p o s s i b l e u n t i l a f t e r camp. D u r i n g November 1 985 and January 1 986, f i v e boys and seven g i r l s l i v i n g i n the Vancouver area were i n t e r v i e w e d i n t h e i r homes. ( I n t e r v i e w s were conducted w i t h C a t h y , D ianne , K r i s t a , M a i r i , Mindy , Vanessa; B r a d , K y l e , P e t e r , Todd and T y s o n ) . Pseudonyms are used throughout the s t u d y . 4 1 I I I . RATIONALE FOR TECHNIQUES The study was grounded i n the i n t e r p r e t i v e a n t h r o p o l o g i c a l paradigm which r e l i e s p r i m a r i l y on s u b j e c t i v e and q u a n t i t a t i v e data c o l l e c t i o n methods. F i e l d study and c l i n i c a l i n t e r v i e w t e c h n i q u e s were employed to o b t a i n a d e t a i l e d and n a t u r a l i s t i c p i c t u r e o f d i a b e t e s from a c h i l d ' s p e r s p e c t i v e . C h i l d r e n w i t h d i a b e t e s were encouraged to p a r t i c i p a t e i n d i a b e t e s 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 s u p e r v i s e d 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 had v a r i o u s o p p o r t u n i t i e s t o observe the c h i l d r e n over the two weeks o f camp and attempted to a n a l y z e the u n d e r l y i n g dynamics a f f e c t i n g the group and i n d i v i d u a l s . The h e a l t h team ( n u r s e s , d i e t i t i a n and d o c t o r or m e d i c a l s t u d e n t ) f a c i l i t a t e d ' q u e s t i o n and answer' s e s s i o n s 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 which p r o v i d e d i n s i g h t i n t o c h i l d r e n ' s i d e a s about d i a b e t e s . The c l i n i c a l i n t e r v i e w procedure was used to a s c e r t a i n the n a t u r e and e x t e n t of i n d i v i d u a l c h i l d r e n ' s knowledge about d i a b e t e s and t o probe the i n t e r r e l a t i o n s h i p of s t r u c t u r e of t h e i r b e l i e f s . The i n t e r v i e w format was chosen to e l i c i t i n f o r m a t i o n about a complex and e m o t i o n a l l y l a d e n s u b j e c t and probe s e n t i m e n t s u n d e r l y i n g e x p r e s s e d o p i n i o n s . D u r i n g i n t e r v i e w s , d i s c u s s i o n was i n i t i a t e d v i a ' t r i g g e r ' q u e s t i o n s and p i c t u r e s t o probe c h i l d r e n ' s c o n c e p t i o n s and p e r c e i v e d 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 . T h i s e x p l o r a t o r y approach p r o v i d e d a s e n s i t i v i t y t o p o s s i b l e m i s u n d e r s t a n d i n g o f concepts and an a p p r e c i a t i o n of c h i l d r e n ' s p e r s p e c t i v e s about d i a b e t e s . 42 IV. DATA COLLECTION PROCEDURES The i n v e s t i g a t i o n took p l a c e a t d i a b e t i c camp and i n c h i l d r e n ' s homes. Records were kept as f i e l d n o t e s , drawings and a u d i o - t a p e r e c o r d i n g s o f e d u c a t i o n a l s e s s i o n s and i n t e r v i e w s . At camp, i m p r e s s i o n s and i n f o r m a t i o n were g a t h e r e d which guided the development of the games, r o l e p l a y s and i n t e r v i e w format. F o l l o w i n g the f i e l d s t u d y , h y p o t h e s i z e d c o n s t r u c t s were developed f o r each r e s e a r c h q u e s t i o n and the i n t e r v i e w p r o t o c o l f o r m u l a t e d . Phase 1; 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 was the camp d i e t i t i a n , made f i e l d notes from her o b s e r v a t i o n s and t a l k s w i t h c h i l d r e n d u r i n g meal and snack t i m e s , b l o o d g l u c o s e m o n i t o r i n g and i n s u l i n 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 e d u c a t i o n a l a c t i v i t i e s ; as w e l l as d u r i n g n u t r i t i o n a l assessments and meal p l a n a d j u s t m e n t s . The d i e t i t i a n was a l l o t t e d two h o u r - l o n g p e r i o d s w i t h the campers ( a f t e r they had been d i v i d e d i n t o t h r e e g r o u p s ) . Games, 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 s e s s i o n s were used to uncover d i a b e t i c c h i l d r e n ' s u n d e r s t a n d i n g o f c o n c e p t s , the cause, d i a g n o s i s , t r e a t m e n t , and management of d i a b e t e s i n s p o r t s and e a t i n g s i t u a t i o n s . The o b j e c t i v e s o f the d i e t i t i a n ' s f i r s t e d u c a t i o n a l a c t i v i t y were: t o i d e n t i f y campers' u n d e r s t a n d i n g of concepts r e l a t e d to d i e t and d i a b e t e s ; t o answer q u e s t i o n s r e l a t e d to 43 d i e t at camp; t o r e v i e w d i e t p r i n c i p l e s and encourage the campers to b r i n g f o r w a r d needed d i e t changes. T h i s s e s s i o n p r o v i d e d i n s i g h t i n t o 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 way o f e a t i n g . Questions and Answers about Diabetes The group was asked 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 about 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 words, and e x p l a i n why foods are put i n p a r t i c u l a r food c h o i c e groups (see Appendix T h r e e ) . F o l l o w i n g these e x p l a n a t i o n s , teams p l a y e d a game c a l l e d ' N u t r i t i o n a l P u r s u i t ' . N u t r i t i o n a l Pursuit The N u t r i t i o n a l P u r s u i t game (see Appendix Three) was p l a y e d by teams u s i n g s e l e c t e d q u e s t i o n s t o i d e n t i f y i d e a s about the d i a b e t i c way of 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 of d i a b e t e s - r e l a t e d concepts The second e d u c a t i o n a l a c t i v i t y was conducted j o i n t l y w i t h the nurses and m e d i c a l s t a f f , a d e p a r t u r e from p r e v i o u s y e a r s , to emphasize the team approach and f o c u s on key p o i n t s r e l a t e d t o d i e t , e x e r c i s e and the e m o t i o n a l impact o f d i a b e t e s . Role p l a y s were used t o enable campers to e x p r e s s t h e i r i d e a s about 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 campers' questions and health- related concerns. Role Playing The role plays (see Appendix Three) were designed t o e l i c i t memories, b e l i e f s , f e e l i n g s , i s s u e s and problems r e l a t e d 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 p r i n c i p l e s of b l o o d g l u c o s e c o n t r o l and 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 s . Phase 2: In C h i l d r e n ' s Homes Interview Protocol The i n t e r v i e w p r o t o c o l (see Appendix Four) was developed as a r e s u l t of o b s e r v a t i o n s and the i n t e r a c t i o n s a t camp. The c a t e g o r i e s of q u e s t i o n s t o be asked were based on words i d e n t i f i e d by the 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 . W r i t t e n consent 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 were c a r r i e d out then p a r e n t s and c h i l d r e n were c o n t a c t e d by phone, f o l l o w i n g camp to s e t up meetings. The i n t e r v i e w s , each a p p r o x i m a t e l y 30 minutes 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 t o e x p r e s s t h e i r b e l i e f s . In many c a s e s , one or both p a r e n t s asked q u e s t i o n s or p r o v i d e d a d d i t i o n a l 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 e x p e r i e n c e s w i t h d i a b e t e s . T h i s i n f o r m a t i o n was used to supplement b i o g r a p h i c data on the c h i l d . Each i n t e r v i e w t r a n s c r i p t i n c l u d e d a d e s c r i p t i o n of the respondent and the i n t e r v i e w , as w e l l as the a t t i t u d e of the respondent and f a m i l y . Events 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 u n u s u a l c i r c u m s t a n c e s , such as language d i f f i c u l t y , i n t e r r u p t i o n s , e t c . were noted. Interviews B e f o r e the i n t e r v i e w an i n t r o d u c t o r y statement (see Appendix F i v e ) was read to the c h i l d . P i c t u r e s were used i n combinat ion wi th ' t r i g g e r q u e s t i o n s ' to e l i c i t responses to s i t u a t i o n s or i n s t a n c e s . Each c h i l d was asked to e x p l a i n h i s or her p e r c e p t i o n . The i n t e r v i e w p r o t o c o l evo lved wi th p r o b i n g and answers g iven i n response to q u e s t i o n s ; a l l c h i l d r e n were not asked e x a c t l y the same q u e s t i o n s . The p r o t o c o l o f q u e s t i o n s and p i c t u r e s was des igned to uncover the c h i l d ' s b e l i e f s about the f o l l o w i n g aspec t s of d i a b e t e s : 1) Why d i d you get d i a b e t e s ? 2) What i s i t l i k e hav ing d i a b e t e s ? 3) How does i n s u l i n work? 4) What i s i t l i k e to have low blood sugar? 5) What i s i t l i k e to have h igh b lood sugar? 6) Why do you t e s t your b lood? 7) Why do you t e s t your u r i n e ? 8) What i s the d i a b e t i c way of e a t i n g l i k e ? 9) What r u l e s do you have about s p o r t s ? 10) What do you wonder about d i a b e t e s ? 11) What problems do you have because you have d i a b e t e s ? V. DATA PROCESSING AND ANALYSIS Data c o l l e c t e d i n c l u d e d : notes from o b s e r v a t i o n s and c o n v e r s a t i o n s , as w e l l as t r a n s c r i p t s from a u d i o - t a p e s of the ' q u e s t i o n and answer' s e s s i o n s , r o l e p lays and i n t e r v i e w s as w e l l as c h i l d r e n ' s drawings . Both i m p l i c i t and e x p l i c i t b e l i e f s were r e c o r d e d and trans formed i n t o p r o p o s i t i o n a l format . 46 A n a l y s i s o f the t r a n s c r i p t s and f i e l d notes began w i t h the assumptions t h a t : c h i l d r e n answered h o n e s t l y ; answers were c o n s i s t e n t w i t h p e r s o n a l meanings of concepts and t h a t c h i l d r e n h o l d m u l t i p l e c o n t r a d i c t o r y n o t i o n s . C h i l d r e n ' s responses were condensed i n t o c a t e g o r i e s by v e r b a l and c o n t e n t a n a l y s i s and d a t a - d r i v e n c a t e g o r i e s were formed. The r e s e a r c h e r endeavoured to c a p t u r e , i n the i n t e r p r e t a t i o n s , both the a t t i t u d e s and the e x p e c t a t i o n s of the c h i l d r e n i n an attempt to determine the s o c i o l o g i c a l , p s y c h o l o g i c a l and e d u c a t i o n a l s i g n i f i c a n c e of the d a t a . I n d i v i d u a l C h i l d r e n ' s B e l i e f s The i n v e s t i g a t o r t r i e d to a v o i d c a t e g o r i z i n g c h i l d r e n ' s e x p l a n a t i o n s a c c o r d i n g to p r e - e x i s t i n g c r i t e r i a , such as P i a g e t ' s d evelopmental s t a g e s . S i n c e t h i s study was concerned w i t h p r o c e s s e s of concept l e a r n i n g not addressed by P i a g e t ' s t h e o r y , p r o cedures f o r f i n d i n g and r e p r e s e n t i n g p a t t e r n s i n i n t e r v i e w data were adopted from the ' I n t e r v i e w Vee' t e c h n i q u e (see F i g u r e 3) developed by A u l t , Novak and Gowin ( 1 9 8 4 ) . The •Vee' h e u r i s t i c , d e r i v e d from Gowin's ( 197 9» 1981) 'Knowledge Vee' was used to i n t e r p r e t and r e p r e s e n t c h i l d r e n ' s d i a b e t e s c o n c e p t s . I n the a n a l y s i s of responses w i t h the I n t e r v i e w Vee, Gowin's s t e p s f o r a n a l y z i n g knowledge c l a i m s are "run i n r e v e r s e 47 COGNITIVE DOMAIN KNOWLEDGE DOMAIN Key Interview Int erviews F i g u r e 3 . I n f e r r i n g c o n c e p t u a l s t r u c t u r e on the I n t e r v i e w Vee. (Adapted from A u l t , Novak and Gowin, 1984) The Interview Vee provided the framework f o r making i n f e r e n c e s about the conceptual s t u r c t u r e t h a t would l e a d a c h i l d to make the c l a i m s o b t a i n e d i n the context of the i n t e r v i e w . The f u n c t i o n of the 'Vee* was to a s s i s t i n j u d g i n g the c o n s i s t e n c y i n l o g i c and p r e c i s i o n of meaning i n the sample of knowledge claims ( A u l t , Novak and Gowin, 1984). The h e u r i s t i c was used to t r a n s l a t e i n d i v i d u a l c h i l d r e n ' s d e s c r i p t i v e and explanatory statements i n t o i n f e r r e d concepts and p r i n c i p l e s . D e s c r i p t i v e statements were transformed i n t o i n f e r r e d concepts (naming o b j e c t s and l a b e l i n g events) and explanatory statements became i n f e r r e d p r i n c i p l e s ( r u l e s which govern t h i n k i n g or r e f e r to p a t t e r n i n e v e n t s ) . I n f e r r e d t h e o r i e s were deemed to be analogous t h e o r i e s at the t h i r d l e v e l of the 'Knowledge Vee'. 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 D i a b e t e s A ' c o n c e p t u a l i n v e n t o r y ' (see f o r example, C a t h e r a l l , 1981) was used to r e p r e s e n t a composite of c h i l d r e n ' s b e l i e f s , s u p e r i m p o s i n g or i n t e r t w i n i n g both c o g n i t i v e and a f f e c t i v e a s p e c t s of d i a b e t e s . P l a u s i b l e c o n n e c t i o n s and e x p l a n a t i o n s were sought and r e c u r r e n t p a t t e r n s or themes t h a t emerged were h i g h l i g h t e d . Dominant themes were c l a s s i f i e d i n t o a framework m o d i f i e d from Kleinman's (1978) ' e x p l a n a t o r y model' u s i n g terms and i d e a s 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 . The p henomenological p e r s p e c t i v e of d i a b e t e s i n c l u d e d c h i l d r e n ' s b e l i e f s r e g a r d i n g : d i a b e t e s , i t s e t i o l o g y , management, the t h r e a t of c o m p l i c a t i o n s , t h e i r f e e l i n g s of c o n t r o l , r o l e i n c a r e , degree of dependence, d e c i s i o n - m a k i n g , and the f u t u r e . C h i l d r e n ' s I n t e r p r e t a t i o n s o f M e d i c a l Knowledge A comparison of the' c h i l d ' s model to the b i o m e d i c a l model was used to show c o n g r u e n c i e s and d i s c r e p a n c i e s between v i e w p o i n t s and i m p l i c a t i o n s f o r d i a b e t e s e d u c a t i o n i n t e r v e n t i o n s . D i f f e r e n c e s between the c h i l d ' s and b i o m e d i c a l p e r s p e c t i v e p o i n t e d out where e d u c a t i o n a l i n t e r v e n t i o n s c o u l d be t r i a l l e d t h a t would be a p p r o p r i a t e to the l e a r n i n g needs of the c h i l d . CHAPTER FOUR FINDINGS OF THE STUDY I. INTRODUCTION The findings of this study constitute an explication of the child's model of diabetes. What diabetes means from a child's perspective was i d e n t i f i e d from observations, role playing, discussions, drawings and conversations with diabetic children. The data collected were based on terms and ideas children used, i n a role playing context, to explain diabetes to a friend or someone who knew nothing about diabetes. The results of this study are oriented around the f i v e components of an explanatory model elaborated by Kleinman (1978). Presented i n this chapter are: 1. I l l u s t r a t i v e analyses of individual children's ideas about diabetes, using an 'Interview Vee' (after Ault et a l , 1984). 2. An analysis of 'patterns of responses* from children's explanations of diabetes. 3. A comparison of the child's model of diabetes and the biomedical model. II. ANALYSES OF INDIVIDUAL CHILDREN'S CONCEPTS OF DIABETES Children's b e l i e f s were i d e n t i f i e d through c l i n i c a l interviews which used an open-ended set of questions addressing cognitive and a f f e c t i v e components of diabetes. Children's claims were drawn from Interview Vees (See Figures 4 and 5). 5 0 F i g u r e 4 . Todd's I n t e r v i e w Vee f o r D i a b e t e s (age 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 of the 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 E t i o l o g y : Caused by e x c e s s sugar Not sure of cause Course of S i c k n e s s Got d i a b e t e s from too much candy. Is i t c a t c h y ? How do you t u r n d i a b e t i c or are you j u s t born d i a b e t i c ? G r i e f response Stigma I n s u l i n i s e s s e n t i a l 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 to be a d i a b e t i c . I t s bad f o r you K i d s t e a s e . . . t h e n I t e l l them i t s not a d i s e a s e . You j u s t have to take n e e d l e s every t w i c e a day to keep a l i v e . Lead a normal l i f e P a t h o p h y s i o l o g y : You're normal--you don't get c a v i t i e s . Happy--a l o t of t i m e s . Having f un and r u n n i n g . I n s u l i n i s needed Need t o take i n s u l i n Test b l o o d t o determine g l u c o s e l e v e l . T a r get i s 100 to 200 mg/100 mis. High b l o o d g l u c o s e caused by too much suga r / n o t enough e x e r c i s e C e l l s won't l e t sugar i n . I n s u l i n goes i n t o your pancreas and goes t o your c e l l s t o keep you a l i v e . I n s u l i n keeps your sugar l e v e l . Test t o see how h i g h b l o o d sugar i s . Test b e f o r e my n e e d l e - - s h o u l d be i n the middle--200 or 100. I f t e s t h i g h e r - - I had too much sugar or was too l a z y . I s h o u l d t o o u t s i d e and get a l o t of e x e r c i s e ; don't eat jam. 5 1 Onset 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 mis. Shaky Headache Head f e e l s hungry. Hungry. F e e l d i z z y or a b i t shaky, i t s 92 or 8 0 — l o w e r than 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 pounding and g o i n g around. I t f e e l s hungry, my stomach, too. T r e a t r e a c t i o n w i t h f a s t a c t i n g sugar Need to have something s w e e t — g r a p e j u i c e or orange j u i c e or c a n d i e s from Hallowe'en. Test f o r ketones when g l u c o s e i s h i g h , Need to t e s t u r i n e i f I'm h i g h . Test u r i n e i n case meter was wrong. Do u r i n e t e s t to see i f the g l u c o s e was a l i t t l e b i t wrong. Treatment: Need to balance f o o d / i n s u l i n / a c t i v i t y . Take i n s u l i n eve Can't i n j e c t i n arm or stomach [not r o t a t i n g s i t e s ] Have to f o l l o w your d i e t — e v e n when not hungry. D i a b e t i c jam i s po i s o n o u s . Have p r o t e i n f o o d not sugar when b l o o d g l u c o s e i s h i g h . Balance your food and i n s u l i n and p l a y i n g . Not much fun b e i n g d i a b e t i c — a l w a y s have to take n e e d l e s . In my l e g or behind. [Arms?] I'm a l i t t l e b i t too young f o r t h a t [Stomach?] I'm a b i t s c a r e d t h a t i t may h u r t because I'm t i c k l i s h . You have to eat e v e r y t h i n g and sometimes you're r e a l l y f u l l . S c i e n t i s t s found out 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. When I'm r e a l l y h i g h I j u s t have peanut b u t t e r or cheese or jam. Cure means no i n j e c t i o n s / t e s t / l i m i t e d sweets Cure...you don't have to take 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 b l o o d ? ] 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) I n f e r r e d P r i n c i p l e s and Concepts Knowledge Claims of the C h i l d E t i o l o g y : Pancreas stopped f u n c t i o n i n g Pancreas s t o p s w o r k i n g . Course of S i c k n e s s Fear G r i e f Confused Not d i f f e r e n t Long l i f e by not smoking/ d r i n k i n g / f o l l o w i n g d i e t Seared a t f i r s t . Why me? C o n f u s e d — e x p l a i n i n g how you got d i a b e t e s . I don't t h i n k I'm r e a l l y d i f f e r e n t . I don't eat candy and I have to take i n s u l i n . No one ever s a i d a n y t h i n g mean. They never c a l l me names. L i v e l o n g by not smoking. T a k i n g c a r e of what he e a t s . T a k i n g proper m e d i c i n e . Not d r i n k i n g a whole bunch. 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 h i s k i d n e y s . P a t h o p h y s i o l o g y : Test b l o o d f o r g l u c o s e Aim f o r 90 to 120 [mg/100ml] You t e s t how much sugar i s i n your b l o o d . Blood t e s t s s h o u l d be 90 to 1 2 0 — i n the normal range. You get ketones when you're s i c k / Test u r i n e — k e t o n e s . I've had ketones when I'm s i c k . T e l l s you you can't energy Not sure what haemoglobin t e s t means Your homoglobin a t the c l i n i c might be h i g h . I'm not sure why. 53 Onset of Symptoms: R e a c t i o n when weak, d i z z y , shaky, eyes b l u r , f e e l p i n s and n e e d l e s . I f I'm weak, I know I'm low. My l e g s get r e a l l y weak and I can't walk s t r a i g h t . I have to h o l d onto some-t h i n g . I f e e l wobbly then I j u s t c o l l a p s e . I f I'm i n the 60s or 70s I j u s t f e e l d i z z y i n my head and my hands shake. I f e e l w i e r e i n s i d e when I'm lower than t h a t and my eyes get a l l b l u r r y . I f e e l d i f f e r e n t - - l i k e p i n s and n e e d l e s . D r i n k j u i c e to t r e a t a r e a c t i o n ( u s u a l l y b e f o r e b r e a k f a s t ) (When I'm h a v i n g a r e a c t i o n , I d r i n k j u i c e . Then I e a t my b r e a k f a s t or whatever and eat 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 hyper, I know I'm h i g h . I s t a r t d o i n g s i l l y s t u f f . I s t a r t l a u g h i n g my head o f f . Caused by too much food so eat l e s s c a r b o h y d r a t e (1/2 s t a r c h ) and e x e r c i s e more I j u s t cut down on my foo 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 or over I s k i p f o r 5 minute s . Treatment: Take i n s u l i n and a v o i d c e r t a i n foods Have to take needles and not e a t c e r t a i n f o o d s . We're on a d i e t . I n j e c t i n stomach and t h i g h s Don't weigh and measure food as i n s t r u c t e d . E x e r c i s e , but t r a c k causes r e a c t i o n s . Cure would be new B c e l l s Give i t i n my stomach. On the f r o n t s of my l e g s i t h u r t s . We have to eat so much. I t has t o be weighed and measured. [Do you?] no 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 too much f o r me because I always get low a l o t and can't do t h a t . Dr. Tse i s w o r k i n g w i t h c e l l s Cure would mean freedom to do t r a c k i n j e c t i o n s . C ured--I c o u l d do t r a c k . Don't have to take i n s u l i n wherever I go and not have r e a c t i o n s . 54 I I I . PATTERNS OF RESPONSES FROM CHILDREN WITH DIABETES T h i s i n v e n t o r y summarizes the t r e n d s or s i m i l a r i t i e s o f c h i l d r e n ' s b e l i e f s , grouped i n terms of the e x p l a n a t o r y model, i l l u s t r a t e d 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 a t camp and i n t h e i r homes. E t i o l o g y : None of the c h i l d r e n were newly diagnosed and a l l had heard the b i o m e d i c a l e x p l a n a t i o n f o r the cause of d i a b e t e s . D u r i n g the i n t e r v i e w s , the q u e s t i o n "Why d i d you get d i a b e t e s ? " was posed i n the t h i r d p e r s o n , and a number of c h i l d r e n responded w i t h t h e i r p e r s o n a l b e l i e f s . S e v e r a l c h i l d r e n s t a t e d they c o u l d n ' t remember why they thought they got d i a b e t e s , but some p a r e n t s r e c a l l e d what t h e i r c h i l d r e n had s a i d t o them. For example, M a i r i , diagnosed a t age t h r e e , s a i d she c o u l d n ' t remember what she thought when she was younger. Her mother s a i d t h a t M a i r i , at age s i x , t o l d her p a r e n t s she thought she got d i a b e t e s from a n e e d l e . The h o s p i t a l had t e s t e d the f a m i l y f o r a n t i b o d i e s when her s i s t e r was diagnosed as d i a b e t i c and M a i r i thought they had g i v e n her d i a b e t e s so she would be the same. V e r b a l i z e d responses i n d i c a t e d b e l i e f s about e t i o l o g y : "(A) d i s e a s e a f f e c t s your pancreas so t h a t i t doesn't g i v e i n s u l i n . " ( A l i c i a , 10 y e a r s ) "Your pancreas s t o p s w o r k i n g and you can't have s u g a r " ( K y l e , 10 y e a r s ) 5 5 "It j u s t happened—you d i d n ' t do a n y t h i n g wrong" (Mindy, 10 years and Todd, 10 years ) " i t s a v i r u s . . . . . i t has to be i n the f a m i l y " ( T y s o n , 11 years ) " e a t i n g too much candy" (Todd, 11 years and B r a d , 9 years ) Course o f S i o k n e s s / S e v e r i t v and Type o f S i c k R o l e : Diagnosis A l l c h i l d r e n had been h o s p i t a l i z e d at the time of t h e i r d i a g n o s i s . The m a j o r i t y o f c h i l d r e n remembered be ing sad , mad and f r i g h t e n e d of needles as w e l l as confused when they were diagnosed as hav ing d i a b e t e s . The r o l e r e v e r s a l s i l l u s t r a t e d the r e a l drama of d i a b e t e s . Campers enacted ' p a r e n t s ' b laming themselves f o r c a u s i n g d i a b e t e s ; p r o m i s i n g to take the c h i l d to D i s n e y l a n d or buy them a t a p e - r e c o r d e r . ' N u r s e s ' and ' d o c t o r s ' e x p l a i n e d tha t c h i l d r e n were i n the h o s p i t a l because they were s i c k and would have to have needles every day u n t i l there i s a cure for d i a b e t e s . R e f e r r i n g to the p i c t u r e of the g i r l i n the h o s p i t a l bed, boys i n t e r v i e w e d commented: "She's mad because she got i t . She's t h i n k i n g s h e ' s not go ing to be l i k e o ther k i d s . " ( B r a d , 9 years ) "She's f e e l i n g s o r r y for h e r s e l f because she 's a d i a b e t i c . She t h i n k s i t s bad f o r you . (Todd , 11 years ) In a d d i t i o n , a number of c h i l d r e n remembered be ing confused and s t a y i n g i n the h o s p i t a l for what seemed l i k e 56 m o n t h s , f o r e x a m p l e : n I d i d n ' t know what was g o i n g o n " ( V a n e s s a , 12 y e a r s ) "I was r e a l l y s c a r e d . . . . I s t a y e d i n t h e h o s p i t a l s i x m o n t h s . . . . . . I t h i n k a c o u p l e o f m o n t h s . . . " ( P e t e r , 11 y e a r s ) A c u r r e n t t r e n d i s f o r s h o r t e n e d h o s p i t a l i z a t i o n w i t h more c l i n i c and home v i s i t s i n an a t t e m p t t o r e d u c e t h e a n x i e t y f o r t h e f a m i l y . Severity N e i t h e r t h e r o l e p l a y s o r i n t e r v i e w s d i r e c t l y a d d r e s s e d t h e c o n c e p t s o f h e a l t h , i l l n e s s o r d i s e a s e , y e t s e v e r a l comments were made r e g a r d i n g t h e s e c o n c e p t s . "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 on a b a s i c d i e t " ( P e t e r , 11 y e a r s ) " 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 - -n o t e a t i n g a l l t h e swee t f o o d s t h e y d o " ( 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 j u s t c a l l i t ' d i a b e t e s ' . " ( T r e v o r , 10 y e a r s ) Sickness Role C h i l d r e n want t h i n k o f t h e m s e l v e s as n o r m a l , and b e l i e v e t h a t o n l y p a r t o f t h e i r l i f e i s d i f f e r e n t b e c a u s e t h e y h a v e d i a b e t e s . " D i a b e t e s i s a d i s e a s e They m i g h t t e a s e . . . . and I come b a c k and t e l l them i t s n o t a d i s e a s e . You j u s t h a v e t o t a k e n e e d l e s t w i c e a d a y " . ( T o d d , 10 y e a r s ) 57 A l l participants expressed that having diabetes meant certain r e s t r i c t i o n s to th e i r daily a c t i v i t i e s . The denial of food was a prominent concern and a l l children mentioned not being able to eat certain foods. n I always kept wondering—What can I eat? What can't I eat?" (Dianne, 12 years) At camp, 'feelings' were not often mentioned i n descriptions of diabetes. Since the diabetes experience i s i d i o s y n c r a t i c , the interwiewer asked "What i s i t l i k e ? " to i d e n t i f y the emotional component of the experience. Responses indicated the coping styles and strategies used by d i f f e r e n t children. " i t s not that hard...you just have to get used to i t " (Mindy, 10 years and Vanessa, 12 years) Children said they talked about diabetes when they were were newly diagnosed or met new people. Children had been asked: "How do your friends take i t ? " (Krista, 10 years) "Does i t [the needle] hurt? How can you give yourself needles? That's gross" (Mindy, 10 years) Several children commented that they did not talk about diabetes with their friends, or other diabetics at camp. Before our interview, Linda had been talking about her family and was not as shy as her mother had indicated. Linda's mother said this was the f i r s t time her daughter had talked to anyone 58 about d i a b e t e s . For L i n d a (8 y e a r s of age) d i a b e t e s meant: " I t always h u r t s . . . t h e needle Now I ca n ' t do i t on my stomach any more....I can't do i t on my l e g s . . . Nobody's ever t a l k e d about i t [d i a b e t e s ] . . . . . W e f o r g e t about d i a b e t e s and go out and have f u n . . . . . I don't remember when I've had a r e a c t i o n n S e v e r a l c h i l d r e n a l l u d e d t o the stigma a t t a c h e d t o h a v i n g a c h r o n i c c o n d i t i o n . C h i l d r e n ' s r e l u o t a n c e t o d i s c u s s d i a b e t e s , was echoed d u r i n g group a c t i v i t i e s : " I don't t e l l my f r i e n d s about i t . I t s none of t h e i r b u s i n e s s " (Sharon, 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 ' or c o n t a g i o u s . "When they [ c h i l d r e n a t s c h o o l ] thought i t was c a t c h y , I f e l t l i k e showing them what i t f e l t l i k e . People l o o k a t me when they hear I have to t ake 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 they l e a r n e d the way a d i a b e t i c has t o l i v e , t hey'd u n d e r s t a n d a l o t more." (Vanessa, 12 y e a r s ) The book "You Can't Catch D i a b e t e s from a F r i e n d " ( K i p n i s , 1981) was mentioned by s e v e r a l c h i l d r e n . Course o f S i c k n e s s With r e g a r d t o h a v i n g a l o n g l i f e w i t h d i a b e t e s , c h i l d r e n had asked, when d i a g n o s e d : " W i l l I d i e e a r l y ? " ( P e t e r , 11 y e a r s ) ( K r i s t a , 10 y e a r s ) O p i n i o n s r e g a r d i n g the course of d i a b e t e s i n c l u d e d : 5 9 " J u s t b e c a u s e you have d i a b e t e s d o e s n ' t mean y o u you c a n ' t l i v e t h a t l o n g " ( D i a n n e , 1 2 y e a r s ) " 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 on a b a s i c d i e t " ( P e t e r , 1 1 y e a r s ) "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 - -n o t e a t i n g a l l t h e s w e e t f o o d s t h e y do" ( K r i s t a , 1 0 y e a r s ) C h i l d r e n t a l k e d a b o u t h a v i n g a d i s e a s e and a n t i c i p a t e d a c u r e i n t h e n e a r f u t u r e . " y o u r p a n c r e a s s t o p s w o r k i n g and y o u have t o t a k e s h o t s e v e r y d a y , u n t i l t h e r e i s a c u r e " ( D e n i s e , 1 0 y e a r s ) The c h i l d r e n i n t e r v i e w e d f e l t t h a t a c u r e f o r d i a b e t e s w o u l d c o n s i s t o f m a k i n g t h e p a n c r e a s w o r k , o r p u t t i n g i n an a r t i f i c i a l p a n c r e a s o r B c e l l s , f o r i n s t a n c e : " I t s s o r t o f a w i e r d i d e a - - i f t h e y c o u l d t a k e B c e l l s o u t o f someone 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 f u n n y . " ( V a n e s s a , 1 2 y e a r s ) F o r many c h i l d r e n a c u r e w o u l d mean t h a t t h e y c o u l d i n d u l g e and h a v e f r e e d o m f r o m t e s t i n g , c o m i n g home f o r s n a c k s and i n s u l i n i n j e c t i o n s . Some c o n f u s i o n e x i s t e d o v e r t h e i m p l i c a t i o n s o f a c u r e , w h e t h e r t h e y w o u l d s t i l l have r e a c t i o n s , need t o t e s t t h e i r b l o o d g l u c o s e o r f o l l o w a d i e t . " I ' d t r y s o m e t h i n g [ f o o d ] I ' d n e v e r t r i e d . I w o u l d n ' t e a t a w h o l e l o t o f c a n d y . I ' d s o r t o f 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 d o n ' t h a v e t o t a k e i n s u l i n w h e r e v e r I go. [ P r o m p t , m e t e r i n g ? ] I d o n ' t know." ( C a t h y , 1 2 y e a r s ) 6 0 P a t h o p h y s i o l o g y ; E f f e c t s o f Having D i a b e t e s : People w i t h d i a b e t e s are expected t o monitor and c o n t r o l t h e i r b l o o d g l u c o s e l e v e l s . A b e l i e f c o n s i s t e n t w i t h h e a l t h p r o f e s s i o n a l ' s p r e o c c u p a t i o n w i t h b l o o d t e s t i n g , b l o o d g l u c o s e and g l y c o s y l a t e d haemoglobin measurements was: " I t s i n your b l o o d " ( J e s s i c a , 9 y e a r s ) Blood Glucose Testing A c c o r d i n g t o the l i t e r a t u r e , a b l o o d g l u c o s e r e a d i n g o f 80-180 mg/100 ml b e f o r e meals 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 of what t h e i r b l o o d t e s t s s h o u l d be v a r i e d from 60-120 (mg/100 ml) to 100-200 ( m g / d l ) . Campers were r e q u i r e d t o t e s t t h e i r b l o o d g l u c o s e f o u r times d a i l y . Most c h i l d r e n s a i d they t e s t t h r e e t o f o u r times every day a t home (not a t noon on s c h o o l d a y s ) . T e s t i n g f r e q u e n c i e s ranged from f o u r times a day every day t o f o u r times a day t w i c e a f o r t n i g h t . One g i r l whose l i t t l e f i n g e r was peppered w i t h p r i c k marks s a i d t h a t she d i d her blo o d t e s t s on one f i n g e r a l l the time because, ' i t ' s the 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 at camp, r e t u r n i n g from the t e s t i n g s t a t i o n , were o v e r h e a r d comparing t h e i r b l o o d g l u c o s e r e a d i n g s . The i n v e s t i g a t o r was i n t e r e s t e d i n c h i l d r e n ' s i n t e r p r e t a t i o n s of these r e a d i n g s . C h i l d r e n wanted to know each o t h e r ' s r e a d i n g s 6 1 w i t h o u t e x p l o r i n g any cause and e f f e c t r e l a t i o n s h i p . When i n t e r v i e w e d , c h i l d r e n commented t h a t b l o o d t e s t s were a b l e to t e l l them how high or low t h e i r b l o o d sugar was and c o u l d be used to determine the amount of i n s u l i n t o be g i v e n . Two 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 p a r e n t s asked them to use the meter to r u l e out a r e a c t i o n . ( A t camp, bl o o d g l u c o s e 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 r e a c t i o n s were t r e a t e d . ) B l o o d g l u c o s e t e s t s h e l p c h i l d r e n t o d i s t i n g u i s h between low and h i g h r e a d i n g s . The reagent s t r i p s used f o r t e s t i n g work on the p r i n c i p l e of r e f l e c t a n c e of l i g h t based on the g l u c o s e p r e s e n t i n a drop o f b l o o d . One comment d u r i n g an i n t e r v i e w was: " I can t e l l by l o o k i n g a t the b l o o d on the s t i c k . I f i t s l i g h t , I know I ' l l be low. I f i t s dark, I ' l l be h i g h " . ( L i n d a , 8 y e a r s ) H e a l t h p r o f e s s i o n a l s b e l i e v e the b l o o d t e s t i n g e x e r c i s e i s i n v a l u a b l e f o r m o n i t o r i n g g l y c e m i c c o n t r o l . C h i l d r e n d i d not seem to share t h i s b e l i e f . When i n t e r v i e w e d , c h i l d r e n commented t h a t t e s t i n g t a k e s a l o t of time, and i t was a h a s s l e or o b l i g a t i o n t h a t they have to put up w i t h , i n o t h e r words: "sometimes i t bugs me....I get up i n the morning and f e e l so happy and t h i n k about b r e a k f a s t . And then i t h i t s me--I'm g o i n g t o have to do my bl o o d and e v e r y t h i n g " (Mindy, 10 y e a r s ) " i t t a k e s 20 mi n u t e s , b e i n g a good morning" ( P e t e r , 11 y e a r s ) " I t t a k e s a l o t of time I don't c a r e what [amount of i n s u l i n ] I t a k e " (Todd, 11 y e a r s ) 6 2 None of the c h i l d r e n i n t e r v i e w e d appeared to l i n k blood t e s t i n g to management. C h i l d r e n were asked to define ' c o n t r o l ' (which to h e a l t h p r o f e s s i o n a l s would mean blood glucose w i t h i n the normal range). T h i s term was not a f a m i l i a r one, and four campers i n t e r v i e w e d d i d n ' t know what the word meant i n t h i s context. D e f i n i t i o n s i n c l u d e d : "Can you handle i t ? " (Mindy, 10 years) " E a t i n g the r i g h t foods" (Kyle, 10 years) Others recognized that c o n t r o l meant keeping blood sugars low, not high; i n a normal range or s t a b l e . One b e l i e f was t h a t : " I t s e a s i e r to be ' i n c o n t r o l ' i f you are an a d u l t " (Peter, 11 years) C h i l d r e n do not seem to a p p r e c i a t e that other f a c t o r s a f f e c t t h e i r blood glucose, e s p e c i a l l y the impact of s t r e s s and emotions. C h i l d r e n were annoyed or s u r p r i s e d when blood glucose readings d i f f e r e d from a n t i c i p a t e d , given the same food, i n s u l i n and e x e r c i s e . For example: "Sometimes I'm annoyed—I don't know what I di d to get high....I can't f i g u r e out why I'd be high when I ate my proper food and e x e r c i s e d at lunch and r e c e s s . . . . I t bothers me (being high) but I can't r e l l y f e e l anything so I don't th i n k about i t " (Mindy, 10 years) During i n t e r v i e w s , c h i l d r e n c i t e d i n s t a n c e s when they thought the machine was wrong, i n d i c a t i n g they might doubt the r e l i a b i l i t y of the meter or the e f f i c a c y of t h e i r r o u t i n e f o r m a i n t a i n i n g t h e i r blood glucose w i t h i n a normal range. For e x a m p l e : " T h e o t h e r m o r n i n g I was 132. T o d a y I was 132. I t s 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 number l i k e 200 o r 100. I t s p r e t t y h a r d . 1 1 ( P e t e r , 11 y e a r s ) Some c h i l d r e n w e r e m e t i c u l o u s a b o u t r e c o r d i n g t h e i r r e a d i n g s , w h i l e one s a i d : "I a l w a y s f o r g e t t o w r i t e i t i n t h e b o o k . We do when we phone f o r an a p p o i n t m e n t [ w i t h t h e d o c t o r ] . " ( M i n d y , 10 y e a r s ) Glycosylated Haemoglobin A l a b o r a t o r y t e s t i s u s e d t o i n d i c a t e w h e t h e r b l o o d g l u c o s e h a s been o u t o f c o n t r o l ( o v e r 300 mg/100 ml ) i n r e c e n t w e e k s . T h i s t e s t was a l l u d e d t o by t h e c h i l d r e n ; i t s s i g n i f i c a n c e u n c l e a r . "When y o u ' v e a l r e a d y gone t h e r e [ t o t h e c l i n i c ] and t h e y ' v e t a k e n b l o o d i n t h e t u b e . I t h i n k i t s 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 i t s c a l l e d . I t h i n k I 'm a l w a y s o v e r or s o m e t h i n g I h a r d l y e v e r am [ h i g h ] . " ( V a n e s s a , 12 y e a r s ) Urine (Ketone) Testing C o n s i d e r a b l e c o n f u s i o n e x i s t e d w i t h t h i s t o p i c , s i n c e u r i n e c a n be t e s t e d f o r b o t h g l u c o s e o r k e t o n e s . 1 R e c e n t l y b l o o d m o n i t o r i n g h a s become t h e p r i m a r y t e s t f o r g l u c o s e w i t h u r i n e t e s t i n g u s e d most o f t e n t o d e t e c t k e t o n e s when b l o o d 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 t h a n 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 re h i g h ( o v e r 300 mg/100 ml) or when c h i l d r e n a re s i c k . Comments from campers i n c l u d e d : "ketones a re sugar i n your u r i n e " ( S a r a , 8 y e a r s ) "ketones a re what you get when you can'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 won't happen a g a i n i f you eat r i g h t and have i n s u l i n " ( J a ne, 9 y e a r s ) D u r i n g i n t e r v i e w s , o n l y f o u r of the t w e l v e c h i l d r e n s a i d they t e s t e d t h e i r u r i n e f o r k e t o n e s ; t h r e e s a i d they t e s t e d when they were s i c k . Two b e l i e v e d t h a t you are t e s t i n g f o r f a t or a c i d burned; 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 b l a d d e r s y s t e m — u r i n e " (Vanessa, 12 y e a r s ) "ketones are f a t or a c i d . They're i n your k i d n e y " [don't know how they got t h e r e ] ( B r a d , 9 y e a r s ) "when you get n e g a t i v e . . . . i t s i m p o r t a n t not t o be h i g h — o r y o u ' l l get k e y s t o n e s - - i s t h a t the name? [Prompt: k e t o n e s ] I t h i n k t h e y ' r e from the f a t you e a t " (Mindy, 10 y e a r s ) " ( t e s t ) to see i f the g l u c o s e was a l i t t l e b i t wrong" (Todd, 11 y e a r s ) pnset o f Symptoms: At camp, s t a f f were expected to d e t e c t c h i l d r e n e x p e r i e n c i n g low bl o o d g l u c o s e , commonly c a l l e d ' h a v i n g a r e a c t i o n ' . S t a f f i n i t i a t e d o n - t h e - s p o t b l o o d g l u c o s e t e s t i n g and d e t e r m i n e d the a p p r o p r i a t e a c t i o n t o ta k e depending on the degree 65 of s e v e r i t y o f the h y p o g l y c e m i a . A number o f c h i l d r e n s a i d t hey c o u l d t e l l i n t u i t i v e l y when they were low, but they were not as r e l i a b l e d e t e c t i n g the symptoms of h i g h b l o o d 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 too much [ i n s u l i n ] " (Dianne, 12 y e a r s ) "My mom makes me do my b l o o d to make sure I'm not h i g h " (Vanessa, 12 y e a r s ) Hypoglycemia "What's i t l i k e when you are low?" was posed i n an attempt to e l i c i t 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 of a r e a c t i o n . The most prominent responses were the f e e l i n g of b e i n g d i z z y ; weak, f a l l i n g over or t r i p p i n g ; a l s o b e i n g nervous, shaky, s h i v e r i n g . Other i m p r e s s i o n s i n c l u d e d b l u r r e d v i s i o n or t e a r s ; f e e l i n g angry or grouchy; a f e e l i n g o f s i c k n e s s or a stomach ache. Others b e l i e v e d the symptoms s i g n a l l e d t h a t they were hungry and a f e e l i n g o f p a n i c or need to get f o o d . "You're g o i n g t o f a l l over and d i e . You're d i z z y You f e e l weak and can'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 m i d d l e of i t . You're c o l d . Your l e g s shake so much you f e e l t h e y ' r e not t h e r e . . . . . " (Mindy, 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 low, l i k e you have a thermometer i n s i d e y o u r s e l f and every time you l o s e sugar you can f e e l i t drop i n s i d e you." (Dianne, 12 y e a r s ) "my head f e e l s l i k e i t s hungry" (Dianne, 12 y e a r s Todd, 11 y e a r s ) "I k i n d o f f e e l l i k e p i n s and n e e d l e s a l l o v e r " ( K r i s t a , 10 y e a r s V a n e s s a , 12 y e a r s ) Many c h i l d r e n commented t h a t t h e y c a n ' t t e l l where t h e y a r e , who t h e y a r e , o r h e a r c o n v e r s a t i o n s w h i l e t h e y a r e h a v i n g a r e a c t i o n . One g i r l commented t h a t : " l a t e r t h e y t e l l s t o r i e s a b o u t me" ( V a n e s s a , 12 y e a r s ) A n o t h e r a d m i t t e d t h a t h e r b e s t f r i e n d e x p l a i n e d t o p e o p l e when she was h a v i n g a r e a c t i o n , " b u t I c a n ' t r e a l l y h e a r what she s a y s " ( K r i s t a , 10 y e a r s ) D i s c u s s i o n s a t camp c e n t e r e d a r o u n d t h e v a l u e o f c a r r y i n g a f a s t - a c t i n g s u g a r a t a l l t i m e s , s i n c e r e a c t i o n s c a n o c c u r q u i c k l y . Most c h i l d r e n s a i d t h e y do n o t c a r r y s u g a r w i t h t h e m . P a r e n t s and h e a l t h w o r k e r s f e e l c h i l d r e n c o u l d be t e m p t e d t o e a t t h e s u g a r when i t i s n o t n e e d e d t o t r e a t a r e a c t i o n . Most c a m p e r s had a n e c d o t e s a b o u t t h e i r r e a c t i o n s , f o r e x a m p l e : "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 and 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 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 . 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 h e a d 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 l o w ' . I had (a r e a c t i o n ) 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 and b a c k and s t a r t s s h o v i n g t h i n g s i n my m o u t h . And I d o n ' t know w h a t ' s g o i n g o n . T h e n e v e r y b o d y ' s a s k i n g — ' a r e y o u a l l r i g h t ? ' • a r e y o u O K ? • ( V a n e s s a , 12 y e a r s ) Treating a Reaction: The almost unanimous response was t h a t " i t f e e l s b e t t e r " when a r e a c t i o n has been t r e a t e d , and blood sugar i s r i s i n g . P o p u l a r responses i n c l u d e d f e e l i n g s t r o n g e r and e n e r g e t i c , f o r example: "... l i k e you were c a r r y i n g something r e a l l y heavy and you j u s t took i t o f f " ( M a i r i , 11 y e a r s ) "You f e e l l i k e Superman...you f e e l a l o t b e t t e r " (Cathy, 12 y e a r s ) " 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 " (Tyson, 10 y e a r s ) " I s t a r t f e e l i n g b e t t e r - - l i k e s m i l i n g " ( K r i s t a , 10 y e a r s ) Hyperglycemia C h i l d r e n ' s assessments of what was ' h i g h ' ranged from 150 to 300 (mg g l u c o s e per 100 ml b l o o d ) . "Over 150 I c a l l p r e t t y h i g h " (Dianne, 12 y e a r s ) One g i r l ' s i n t e r p r e t a t i o n of h i g h b l o o d g l u c o s e i n d i c a t e d c o n f u s i o n w i t h k e t o s i s and the Somogyi e f f e c t . "At n i g h t . . . c o u l d have had a r e a c t i o n and not known i t . Then j u s t went h i g h . I don'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 the n i g h t . I t h i n k i t s because you burn f a t . " ( M a i r i , 11 y e a r s ) I n response to the q u e s t i o n , "What would a mother say to the c h i l d whose b l o o d t e s t s were h i g h ? " , a number of c h i l d r e n s a i d parents q u e s t i o n e d whether they had been e a t i n g too much or not e x e r c i s i n g enough. C h i l d r e n r e a l i z e d the need to lower t h e i r b lood g lucose l e v e l s through e x e r c i s e or t a k i n g more i n s u l i n . "I u s u a l l y go out and run around and p l a y to get i t down a b i t " ( B r a d , 9 y e a r s ) "I'm supposed to add 1 or 2 o f Toronto ( i n s u l i n ) Mom ( d e c i d e s ) — s h e used to be a n u r s e . I f i t was my d e c i s i o n I w o u l d n ' t know what to d o . " (Vanessa , 12 years ) S e v e r a l c h i l d r e n admit ted o c c a s i o n a l d i f f i c u l t y d i s t i n g u i s h i n g between h igh and low blood sugar . Symptoms that o v e r l a p p e d i n c l u d e d : headache, stomach gramps, be ing grumpy, and f e e l i n g s i c k . A common i n d i c a t o r of h igh b lood g lucose was tha t of t h i r s t , as w e l l as f e e l i n g sweaty and h o t . "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 tha t w e l l , I can t e l l I'm go ing to be h i g h . I k i n d of f e e l heavy" ( K r i s t a , 10 years ) "When I'm h igh I f e e l so l o w . . . . . . you c a n ' t t e l l where you are" (Mindy, 10 y e a r s ) "I f e e l s p a c y - - l i k e y o u ' r e on top of a c l o u d and y o u ' r e r e a l l y g i d d y . " (Dianne , 12 years ) When asked why t h i s would happen: "Too much f o o d , not enough i n s u l i n or y o u ' r e growing". ( M a i r i , 11 y e a r s ) "When I s i t around on the couch do ing n o t h i n g " ( B r a d , 9 y e a r s ) One of the campers was c r y i n g and s t a f f i n i t i a l l y thought she was homesick. When q u e s t i o n e d , she a d m i t t e d c r y i n g because : "my mom t o l d me t h a t i f my r e a d i n g s were over 300 I would go b l i n d . . . . . i t s not r e a l l y good to be h i g h i f you're h i g h you s h o u l d go e x e r c i s e and take more i n s u l i n . . . ( C r y ) . . w h e n my mom got mad because I had a h i g h r e a d i n g . . . (Upset)..because mom got mad a t him" ( K r i s t a , 10 y e a r s ) Treatment D i a b e t e s management has been b u i l t on the c o r n e r s t o n e s o f i n s u l i n r e p l a c e m e n t , d i e t and e x e r c i s e p r e s c r i p t i o n s . Insulin Therapy A l l the d i a b e t i c s a t camp were expected t o g i v e t h e i r own i n s u l i n i n j e c t i o n s ; t h i s g o a l was a c h i e v e d by the end of each s e s s i o n . C h i l d r e n seemed to accept the need f o r i n s u l i n i n j e c t i o n s , but found the procedure an i n c o n v e n i e n c e . There was no consensus r e g a r d i n g the n e e d l e , some c h i l d r e n s a i d t h a t i t h u r t , o t h e r s commented t h a t i t h u r t a b i t , or d i d n ' t h u r t . F e e l i n g s e x p r e s s e d i n c l u d e d : " I t s s o r t of l i k e a r o u t i n e . Sometimes i n the morning you g i v e your shot and you're at s c h o o l t r y i n g t o remember i f you d i d or not, you're so used to i t Sometimes I'm at the bus s t o p and I f o r g e t i f I've g i v e n my s h o t - - s o I f e e l around to f i n d a p l a c e t h a t h u r t s to I know I d i d " (Vanessa, 12 y e a r s ) " I hate 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 get 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 take a p i l l " ( K y l e , 10 y e a r s ) C h i l d r e n tended t o have p r e f e r r e d s i t e s f o r t h e i r i n s u l i n i n j e c t i o n s . Some c h i l d r e n had not been r o t a t i n g t h e i r i n j e c t i o n s i t e s 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 by one c h i l d ; "Now I can't do i t on my stomach anymore because my stomach's s t a r t e d t o bulge up. We don't do i t on my l e g anymore because my l e g bulges up and s w e l l s " ( L i n d a , 8 y e a r s ) One boy e x p l a i n e d why he d i d n ' t i n j e c t i n t o h i s arms: "I'm a l i t t l e b i t young y e t " (Todd, 11 y e a r s ) Camp p o l i c y d i c t a t e d t h a t c h i l d r e n not i n j e c t i n t o t h e i r arms s i n c e t h e r e was i n s u f f i c i e n t subcutaneous f a t ( u s u a l i n younger c h i l d r e n ) ; or over muscles to be e x e r c i s e d . The m e d i c a l s t a f f r e v iewed the sc h e d u l e of events t o a n t i c i p a t e upcoming a c t i v i t i e s t o guide the s e l e c t i o n o f i n j e c t i o n s i t e s . When shown the p i c t u r e of the g i r l i n j e c t i n g h e r s e l f i n the l e g , one boy commented: "The o n l y problem i s she's d o i n g i t i n her l e g . That's OK i f you're g o i n g t o be l a y i n g down a l l day i t s f i n e . But i f you're g o i n g t o be r u n n i n g around a l l day i t works q u i c k e r " (Tyson, 11 y e a r s ) The c o m p l e x i t y of i n s u l i n t h e r a p y has been s i m p l i f i e d f o r i n s t r u c t i o n 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 from what h e a l t h p r o f e s s i o n a l s might e x p e c t . One of the campers asked a c o u n s e l l o r : "I f your pancreas i s here [ p o i n t i n g to h i s abdomen] why d o n ' t we g i v e needles i n the stomach?" ( R i c k y , 9 y e a r s ) S ince the c h i l d cannot see the pancreas , the system remains something o f a m y s t e r y . Another boy knew tha t h i s pancreas was unable to produce i n s u l i n , but was unaware of o ther p a n c r e a t i c f u n c t i o n s : "They say your pancreas i s s l e e p i n g , I'm sure mind i s dead—use l e s s" ( P e t e r , 11 years ) C o n f u s i o n e x i s t e d over the a c t i o n of i n s u l i n . D u r i n g the i n t e r v i e w s , c h i l d r e n were asked , "what does i n s u l i n do i n your body?" Comments I n c l u d e d : "I c a n ' t remember, but I know" ( K r i s t a , 10 years ) S e v e r a l c h i l d r e n f e l t tha t i n s u l i n t r a v e l l e d to the pancreas and one drawing conf irmed t h i s b e l i e f (See Appendix E i g h t ) . In f a c t i n s u l i n e n t e r s the p o r t a l c i r c u l a t i o n on the o p p o s i t e s i d e of the l i v e r , b y p a s s i n g the p a n c r e a s . "The i n s u l i n s t a r t s moving and i t goes i n t o the pancreas and i t goes i n t o the c e l l " ( B r a d , 9 years ) "I f you h i t a b lood v e s s e l , i t works r e a l l y q u i c k l y . But i f you d o n ' t i t j u s t goes a l l over the p lace and i n t o your b lood v e i n s " (Tyson , 11 years ) These b e l i e f s p o i n t e d out that the concepts of ' c e l l ' and c i r c u l a t i o n were not c l e a r . S e v e r a l had l e a r n e d tha t i n s u l i n i s the ' k e y ' that opens the ' d o o r ' to the ' c e l l ' so sugar cou ld e n t e r . T h i s i n t e r p r e t a t i o n was conf irmed by one drawing . When asked , c h i l d r e n were unable to e x p l a i n f u r t h e r . Diabetic Way of Eating D i e t i t i a n s at d i a b e t e s e d u c a t i o n 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 meals and snacks f o r the d i a b e t i c c h i l d r e n ; 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 camp r e g i s t r a t i o n . Three meals and t h r e e snacks were p r o v i d e d a t camp w i t h amounts of food 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 a c t i v i t y . At camp some c h i l d r e n commented t h a t they were not g e t t i n g enough food and were hungry; o t h e r s complained they had too much to e a t ; o t h e r s ate s l o w l y or r e f u s e d t o eat what was r e q u i r e d . A l t hough 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 posed i n i n t e r v i e w s , 'not e a t i n g c e r t a i n f o o d s ' was used i n d e f i n i t i o n s of 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 cause and ' e a t i n g too much' reason f o r h i g h b l o o d sugar r e a d i n g s ; the d e n i a l o f food and l a c k of c h o i c e about when and how much to eat was a s t a t e d as a c o n t i n u i n g problem of h a v i n g d i a b e t e s . " D i a b e t e s means you can't eat c e r t a i n f o o d s " (Cathy, 11 y e a r s Vanessa, 12 y e a r s Brad, 9 y e a r s ) " T e r r i b l e - - n o c h o c o l a t e bars or Coke" (Tyson, 11 y e a r s ) "Sometimes you're r e a l l y hungry and you can't eat because i t s not on your 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 get l e s s and I want more. Sometimes I get a l o t and I don't want t h a t much" (B r a d , 9 y e a r s ) 7 3 "You h a v e t o e a t e v e r y t h i n g and s o m e t i m e s y o u ' r e r e a l l y f u l l " ( T o d d , 11 y e a r s ) The m a j o r i t y o f c h i l d r e n a t camp knew t h e i r m e a l p a t t e r n s and c o u l d p o r t i o n t h e f o o d s r e q u i r e d , but r e l i e d on s t a f f f o r r e f e r e n c e . ( F r o m f o r m s c o m p l e t e d by t h e p a r e n t s , 33 c h i l d r e n knew t h e i r mea l p a t t e r n , 6 d i d s o m e t i m e s , and 2 d i d n o t ; 25 c o u l d p o r t i o n t h e i r f o o d s , 8 c o u l d s o m e t i m e s and 9 c o u l d n o t . ) From the r o l e p l a y s , t h e ' d i e t i t i a n ' e m p h a s i z e d t h a t d i a b e t e s m e a n t : " y o u ' r e on a d i e t " ( K a t y , 10 y e a r s ) N e s t l e ' s Q u i k , no f r u i t f o l l - u p s , no D i n g D o n g s , no C o c o a - P u f f s , no F r o s t e d F l a k e s , no M c D o n a l d ' s a p p l e p i e " ( B r a n d y , 10 y e a r s ) The ' d i a b e t i c way o f e a t i n g ' was f u r t h e r e x p l a i n e d d u r i n g i n t e r v i e w s : " y o u ' r e s u p p o s e d t o w e i g h y o u r f o o d s " [ P r o m p t : Do y o u ? ] " N o " ( C a t h y , 12 y e a r s ) The ' c o n t r o l ' a s p e c t s o f f o l l o w i n g t h e d i e t , were i n t e r p r e t e d t o m e a n : " i f you k e e p on y o u r d i e t , y o u may h a v e t o h a v e o n l y one n e e d l e " ( K r i s t a , 10 y e a r s ) '" " i f you s n e a k a c h o c o l a t e b a r o n c e i n a w h i l e a d a y — i t s g o i n g t o a f f e c t y o u . You m i g h t h a v e t o h a v e more i n s u l i n and end up h a v i n g i t a l l t h e t i m e . Y o u ' l l be u n h a p p y and w i s h I d i d n ' t h a v e t h a t " ( M i n d y , 10 y e a r s ) "A b o y . , i n o u r s c h o o l who had d i a b e t e s t o o , bu 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 i t . He a t e t o o much j u n k f o o d , he w a s n ' t a l l o w e d 7 4 t o o , 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 says t h a t around the age I am not i t s hard not to eat t h a t k i n d o f f o o d . So i f you eat the r i g h t foods now, y o u ' l l be f i n e a f t e r w a r d s . " (Vanessa, 12 y e a r s ) The cause and e f f e c t r e l a t i o n s h i p between sugar and h e a l t h was e x p r e s s e d i n d i f f e r e n t ways. The concept of the sugar c o n t e n t i n foods i s a d i f f i c u l t one to g r a s p . One c h i l d commented t h a t : "you can't eat sugar or candy....we ate a whole 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 found out they had sugar i n them" ( L i n d a , 8 y e a r s ) Another b e l i e f 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 c a v i t i e s " (Todd, 11 y e a r s Mindy, 10 y e a r s ) Regarding d i e t e t i c p r o d u c t s , Todd added " S c i e n t i s t s found out t h a t d i a b e t i c jam--d i e t s t u f f are k i n d o f poisonous and f a t t e n i n g and e v e r y t h i n g . So I take v e r y l i g h t jam. When I'm r e a l l y h i g h I have peanut b u t t e r or cheese or ham" Exercise The c h i l d r e n p a r t i c i p a t e d i n a wide range of a c t i v i t i e s at camp: swimming, w a t e r s k i i n g , h i k i n g , c a n o e i n g , r u n n i n g and f i e l d games. A number of program s t a f f were d i a b e t i c s who s e r v e d as r o l e models and encouraged r e l u c t a n t campers to 75 p a r t i c i p a t e . An i n t e r e s t i n g q u e s t i o n posed by one camper was: "Some people can swim l o n g e r than o t h e r s even i f they have the same snack. Why can't they swim as l o n g ? " (Jane, 9 y e a r s ) The e f f e c t of e x e r c i s e on blo o d g l u c o s e appeared to be w e l l u n d e r s t o o d , f o r example: " r u n n i n g always b r i n g s my sugar down" (Rob, 10 y e a r s ) "For s p o r t s , I'd say 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 out and do l i k e you d i d b e f o r e . I u s u a l l y eat my normal snacks and take something a l o n g j u s t i n case. When I go swimming or s k a t i n g i t s j u s t f o o l i n g around . . . i t s r e a l l y n o t h i n g . " (Vanessa, 12 y e a r s ) The p r e c e d i n g e l i c i t a t i o n of c h i l d r e n ' s b e l i e f s has i d e n t i f i e d the p e r s o n a l and s o c i a l meaning t h a t c h i l d r e n a t t a c h to 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 about the f u t u r e and t h e i r own t h e r a p e u t i c g o a l s . Comparison o f the c h i l d ' s model w i t h the b i o m e d i c a l model en a b l e s the c l i n i c i a n t o i d e n t i f y major d i s c r e p a n c i e s t h a t may cause problems f o r c l i n i c a l management. Such comparisons h e l p the p r a c t i t i o n e r to empathize w i t h c h i l d r e n who have d i a b e t e s and h e l p him d e c i d e which a s p e c t s of h i s e x p l a n a t o r y 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 of c h i l d r e n ' s knowledge c l a i m s about d i a b e t e s and t h e i r comparison w i t h the c l i n i c a l e x p l a n a t a i o n s of the b i o m e d i c a l model. The f i n d i n g s are i l l u s t r a t e d u s i n g the a s p e c t s of the e x p l a n a t o r y model. Table I. 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 the C h i l d ' s P e r s p e c t i v e and the B i o m e d i c a l Model Knowledge C l a i m s of C h i l d r e n I n t e r p r e t a t i o n of C l a i m 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 w o r k / s t o p s V i r u s / Catchy/ C o n t a g i o u s / I t s i n the f a m i l y / From a n e e d l e / Too much candy No p r i o r knowledge Rote l e a r n i n g o f me c h a n i c a l breakdown concept No p r i o r knowledge Due to e x t e r n a l cause such as v i r u s punishment, or h e r e d i t y Sweets are now r e s t r i c t e d s i n c e sugar caused the problem b. Course o f D i a b e t e s ; ( i ) At Diagnosis: F e e l sad/mad/ co n f u s e d and s c a r e d of ne e d l e s and h o s p i t a l s . F e e l not g o i n g t o be l i k e o t h e r k i d s . Can't have sugar and e a t t h i n g s . N a t u r a l t o have f e e l i n g s o f g r i e f , h e l p l e s s n e s s , f e a r , f r u s t r a t i o n , of be i n g d i f f e r e n t i n new ' i l l n e s s ' r o l e . I n a p p r o p r i a t e a s s i m i l a t i o n of b i o m e d i c a l concept O v e r s i m p l i f i e d u n d e r s t a n d i n g of cause and e f f e c t r e l a t i o n s h i p New procedures and r o l e make the c h i l d f e e l d i f f e r e n t from o t h e r s . The b i o m e d i c a l model s t a t e s t h a t the e m o t i o n a l a s p e c t s of d i a b e t e s i n t e r f e r e w i t h 'management'. Knowledge C l a i m s o f C h i l d r e n I n t e r p r e t a t i o n of C l a i m s Comparison w i t h B i o m e d i c a l Model ( i i ) S i c k n e s s R o l e I t s a d i s e a s e / not a d i s e a s e . D i s e a s e sounds worse. Di s e a s e s c a r e s me. J u s t c a l l i t d i a b e t e s T e a s e / c a l l 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 re an a d u l t . I t s not bad, you get used to i t . I t s not f u n . ( i i i ) Consequences: Always be t h i n / No c a v i t i e s You're h e a l t h i e r . There's no r e a s o n a d i a b e t i c can't l i v e a l o n g t i m e . I f you're h i g h — y o u can damage your eyes, and k i d n e y s C u r e — o n e dose of i n s u l i n / p i l l s / a r t i f i c i a l p a n c r e a s / B c e l l s Cure means no n e e d l e s / c a n 'do' t r a c k or be a p i l o t . S t i l l have r e a c t i o n s / watch d i e t / C h i l d r e n h o l d m u l t i p l e and c o n t r a d i c t o r y b e l i e f s about d i s e a s e . H e a l t h b e l i e f s i n c l u d e p e r c e p t i o n s of s e v e r i t y , b a r r i e r s to adherence and m o t i v a t i n g f a c t o r s . C h i l d r e n a re r e a l i s t i c and want to conform H e a l t h and i l l n e s s are not a dichotomy. Think o f p o s i t i v e a s p e c t s even i f o v e r s i m p l i f i e d . Aware of the v a l u e of c o n t r o l l i n g b l o o d g l u c o s e , R e l u c t a n t t o d i s c u s s . Concerned w i t h the p r e s e n t and b e l i e f t h a t cure w i l l be found soon C h i l d r e n mention i l l n e s s problems such as f e a r and sti g m a 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. C h i l d r e n s i m p l i f y w e l l n e s s a s p e c t s y e t d e f i n e h e a l t h as more than j u s t the absence of d i s e a s e . Share b e l i e f i n ' c o n t r o l ' and p r e v e n t i n g c o m p l i c a t i o n s C h i l d r e n l e s s aware of the v a l u e of c o n t r o l l i n g d i a b e t e s u n t i l a cure found. B e l i e f t h a t cure w i l l mean freedom from n e e d l e s , 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 of what manage-ment w i l l be r e q u i r e d . Cure f o r d i a b e t e s i s i n the e x p e r i m e n t a l s t a g e s . I m p l i c a t i o n s u n c e r t a i n . 78 Knowledge C l a i m s of C h i l d r e n I n t e r p r e t a t i o n of C l a i m Comparison w i t h B i o m e d i c a l Model c. P a t h o p h y s i o l o g y o f D i a b e t e s : ( i ) Blood Glucose Testing: T e l l how h i g h or how much sugar i n the b l o o d / t r y to get c e r t a i n range. Determine amount of i n s u l i n to t a k e / Don't care what amount Takes t i m e / i s a h a s s l e / f o r g e t to r e c o r d / a n d never t a l k about r e a d i n g s Don't know why I'd be h i g h h a v i n g the same i n s u l i n , food and e x e r c i s e / A s u r p r i s e / The machine i s wrong. Understand 'snap shot p i c t u r e ' but not p a t t e r n s or t h e i r s i g n i f i c a n c e Share b e l i e f i n ' c o n t r o l ' through i n d i c a t o r s from b l o o d t e s t i n g Need to a p p r e c i a t e the v a l u e of C h i l d r e n have no r e a s o n to v a l u e t e s t i n g and d i s c u s s procedures s i n c e the r e s u l t s . C h i l d r e n don't und e r s t a n d when not ' i n c o n t r o l 1 when they f o l l o w e d o r d e r s and d i d not ' c h e a t ' . Other f a c t o r s not d i s c l o s e d to them. not d i s c u s s e d . C h i l d r e n q u e s t i o n where p r o f e s s i o n a l s have not shared i n f o r m a t i o n ( o t h e r f a c t o r s ) as p a r t of e d u c a t i o n . ( i i ) Haemoglobin AlC: Needles from the arm h u r t / D o n ' t know why/Homoglobin might be h i g h Do i f you're h a v i n g a l o t of r e a c t i o n s Procedure p a i n f u l and not e x p l a i n e d , C h i l d uses wrong term. M i s c o n c e p t i o n , t e s t r e v e a l s r e c e n t h i g h not low l e v e l s Test i n d i c a t e s l e v e l of c o n t r o l , but concept not c l e a r to c h i l d . I n a p p r o p r i a t e a s s i m i l a t i o n o f b i o m e d i c a l concept ( i i i ) Urine (Ketone) Testing: Test f o r sugar i n u r i n e / C o n f u s i o n between u r i n e t e s t i n g f o r sugar or u r i n e I n a p p r o p r i a t e a s s i m i l a t i o n o f b i o m e d i c a l concept 7 9 Knowledge C l a i m s of C h i l d r e n I n t e r p r e t a t i o n of C l a i m 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 eat Test ( f o r ketones) when s i c k Rote l e a r n i n g w i t h o u t c o n c e p t u a l u n d e r s t a n d i n g Equated w i t h i l l n e s s not the r e a s o n f o r t e s t i n g I n a p p r o p r i a t e a s s i m i l a t i o n . Concept u n d e r s t o o d , but not the p r i n c i p l e or t h e o r y of t e s t i n g f o r ketones d. Onset of Symptoms of D i a b e t e s : ( i ) Hypoglycemia Weak/Dizzy/Can't move/Nervous/ Shaky l i k e a v o l c a n o or earthquake P e r s o n a l e x p e r i e n c e and e x p r e s s i o n of f e e l i n g s ( i i ) After Treating the Reaction: F e e l 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 g o i n g u p / s t r o n g e r / F e e l s b e t t e r / S h a k i n g and a c h i n g go away P e r s o n a l e x p r e s s i o n o f e l a t i o n Not e x p l a i n e d by b i o m e d i c a l model. 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. ( i i i ) Hyperglycemia: F e e l hot/sweaty/ g i d d y / c a n ' t hear when someone's t a l k i n g F e e l so low/ can't t e l l where I am. Had a r e a c t i o n at n ight/went h i g h You burn f a t P e r s o n a l e x p e r i e n c e Not e x p l a i n e d . D i f f i c u l t y d i s t i n g u i s h i n g between h i g h and low. Rote l e a r n i n g o f Somogyi e f f e c t (rebound due to hormonal response) 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 . 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 concept but not the r e a s o n s . 80 Knowledge C la ims of C h i l d I n t e r p r e t a t i o n of C l a i m Comparison wi th B i o m e d i c a l Model ( i v ) Action to Take: Need to eat l e s s / take a b i t more i n s u l i n Assume these changes w i l l prevent of a m e l i o r a t e the prob lem. The s t r e s s f a c t o r s not r e a l i z e d . Understand concept but not p r i n c i p l e s of a s s e s s i n g cause to dec ide on treatment changes. Share b e l i e f tha t c o n t r o l i s p o s s i b l e , without awareness o f other f a c t o r s . e. Treatment o f D i a b e t e s : ( i ) I n s u l i n : I n s u l i n i s key to open door to the c e l l so sugar can go i n / opens sugar box I n s u l i n goes to the pancreas B e l i e f that i n s u l i n goes to one c e l l i s i n c o r r e c t . A l t e r n a t e c o n c e p t i o n U n c e r t a i n of path assume route i s through pancreas . Rote l e a r n i n g without c o n c e p t u a l u n d e r s t a n d i n g M i s c o n c e p t i o n . Pancreas e n t e r s p o r t a l c i r c u l a t i o n . Works q u i c k e r i f you h i t a b lood v e s s e l / i n l e g (due to e x e r c i s e ) Needle h u r t s / want parent s to g i v e . Doesn ' t h u r t . H a s s l e / g e t used to i t / S a w 8 year o l d s c o u l d do i t Good u n d e r s t a n d i n g B e l i e f c o n s i s t e n t wi th e x p e r i e n c e , c o g n i t i v e u n d e r s t a n d i n g C h i l d r e n ' s cop ing s t y l e s d i f f e r . Some want to be dependent, accept the need and mot iva ted by o t h e r s Area of c o n t r o v e r s y . I n s u l i n a c t i o n i s more r a p i d v i a an e x e r c i s e d muscle C h i l d r e n expected to g ive i n j e c t i o n s by age e i g h t . P s y c h o s o c i a l aspects not a d d r e s s e d . Rather take a p i l l . W i s h f u l t h i n k i n g . A l t e r n a t e forms of i n s u l i n d e l i v e r y be ing i n v e s t i g a t e d , I n s u l i n d e s t r o y e d by d i g e s t i o n . 81 Knowledge C l a i m s of C h i l d I n t e r p r e t a t i o n of C l a i m s Comparison w i t h B i o m e d i c a l Model Keeps you a l i v e / h e l p s you be more a c t i v e / G i v e s you energy Can* t do i t . .. i t b u l g e s / R e a l i s t i c p e r s p e c t i v e c o n s i s t e n t w i t h e m o t i o n a l u n d e r s t a n d i n g . C h i l d r e n f a v o u r i n j e c t i o n s s i t e s , Changes occur i n subcutaneous f a t w i t h r e p e a t e d i n j e c t i o n s i n one a r e a Good under-s t a n d i n g o f concepts Advanced concept e x p l a i n e d i n p e r s o n a l terms. Reasons f o r r o t a t i n g s i t e s not a p p r e c i a t e d ( i i ) Way of Eating: You're on a d i e t / Can't eat sugar/ Eat the same f o o d s / H e a l t h i e r / N o junk food/More food as I get b i g g e r Aware of need to match food 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. A p p r e c i a t e needs f o r growth and h e a l t h . Good c o n c e p t u a l u n d e r s t a n d i n g I f you sneak more foods y o u ' l l need more i n s u l i n / I t s not good t o take more R e a l l y hungry/ not a l l o w e d to eat more. Can't eat what I want when I want F r i e n d s t h i n k I'm always e a t i n g . 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 to i n s u l i n due to ' c h e a t i n g ' . High amounts o f i n s u l i n are not recommended. F e e l i n g s o f r e s t r i c t i o n and l a c k of c h o i c e as w e l l as b e i n g d i f f e r e n t . C h i l d r e n s h o u l d not go hungry/adjustments i n t r e a t m e n t r e q u i r e d i f hunger not r e l a t e d h y p o g l y c e m i a . Understand p r i n c i p l e s . T h e o r i e s not d i s c l o s e d . P e r s o n a l a s p e c t s i n c l u d e d i n biomedi c a l e x p l a n a t i o n s 82 Knowledge C l a i m s of C h i l d I n t e r p r e t a t i o n of C h i l d Comparison w i t h B i o m e d i c a l Model ( i i i ) Exercise: Eat 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' Test d u r i n g tournament Don't do t r a c k / c r o s s - c o u n t r y s k i i n g F o r g e t you're d i a b e t i c/have fu n Aware of the p r i n c i p l e s of p r o v i d i n g e x t r a food f o r e x t r a a c t i v i t y and p r e v e n t i n g r e a c t i o n s . M o n i t o r i n g d u r i n g e x t r a a c t i v i t y and s t r e s s i s recommended. P a r t i c i p a t i o n 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 to a v o i d s p o r t s due to r i s k o f hypoglycemia. There 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 a l o n g w i t h o t h e r s 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 Share b i o m e d i c a l model A c t i v i t i e s can be undertaken w i t h a d j u s t m e n t s i n food or i n s u l i n and m o n i t o r i n g g l u c o s e l e v e l s S t r e s s e s compliance w i t h e x e r c i s e p r e s c r i p t i o n s ; c h i l d r e n e x p l a i n e d the p s y c h o l o g i c a l b e n e f i t s T h i s 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 has p o i n t e d out s i m i l a r i t i e s and d i s c r e p a n c i e s i n the two views of c l i n i c a l r e a l i t y . In o r d e r to r e a c h a shared model, the h e a l t h p r a c t i t i o n e r needs to a c t i v e l y n e g o t i a t e w i t h the c h i l d and m e d i a t e between the c h i l d and f a m i l y e x p l a n a t i o n s , where they are d i s c r e p a n t . Trends emerged from t h i s a n a l y s i s o f c h i l d r e n ' s u n d e r s t a n d i n g o f d i a b e t e s , are l i s t e d below: 83 1. C h i l d r e n appeared to have a good u n d e r s t a n d i n g o f c e r t a i n c o n c r e t e concept s , i . e . the i n t e r r e l a t i o n s h i p between i n s u l i n , e a t i n g and e x e r c i s e ; i n s u l i n i n j e c t i o n and b lood g lucose t e s t i n g p r o c e d u r e s . 2 . C h i l d r e n ' s i n t e r p r e t a t i o n of cause and e f f e c t i n the e t i o l o g y and cure of d i a b e t e s i n d i c a t e d they he ld s i m p l i f i e d r a t h e r than m u l t i f a c t o r i a l v i e w p o i n t s . 3 . I n a p p r o p r i a t e a s s i m i l a t i o n of b i o m e d i c a l c o n c e p t s was e v i d e n t from c h i l d r e n ' s e x p l a n a t i o n s o f the cause of d i a b e t e s , i n s u l i n a c t i o n , g l y c o s y l a t e d haemoglobin (HbA1C) and u r i n e t e s t i n g . C h i l d r e n seemed unaware of the va lue of f requent b lood g lucose t e s t i n g or the r o l e of s t r e s s and o ther f a c t o r s a f f e c t i n g these r e a d i n g s . 4. C h i l d r e n were r e l u c t a n t to d i s c u s s c e r t a i n aspec t s o f d i a b e t e s , p a r t i c u l a r l y the l o n g - t e r m e f f e c t s o f hav ing d i a b e t e s and p r e f e r r e d to b e l i e v e that there would be a cure i n the near f u t u r e . 5. P e r s o n a l aspects o f d i a b e t e s not addressed by the b i o m e d i c a l model i n c l u d e d : c h i l d r e n ' s f e e l i n g s at d i a g n o s i s ; e x p e r i e n c e s wi th hypoglycemia and h y p e r g l y c e m i a , as w e l l as the c o n s t r a i n t s o f d i a b e t e s treatment and compliance wi th medica l p r o c e d u r e s . The e d u c a t i o n a l s i g n i f i c a n c e of these f i n d i n g s and proposed i n t e r v e n t i o n s w i l l be o u t l i n e d i n the f i n a l c h a p t e r . 84 CHAPTER FIVE A SUMMARY OF MAJOR FIIDIHGS I . INTRODUCTION T h i s chapter w i l l review the o b j e c t i v e s o f the s t u d y , the e d u c a t i o n a l i m p l i c a t i o n s and recommendations f o r f u t u r e r e s e a r c h i n t o c h i l d r e n ' s u n d e r s t a n d i n g o f d i a b e t e s . I I . OBJECTIVES OF THE STUDY The pr imary o b j e c t i v e of t h i s study has been to i d e n t i f y the nature of c h i l d r e n ' s b e l i e f s about d i a b e t e s , through the use of p a r t i c i p a n t o b s e r v a t i o n , r o l e p l a y s and i n t e r v i e w s w i t h i n d i v i d u a l s . These t echn iques were d i r e c t e d towards answering the f o l l o w i n g r e s e a r c h q u e s t i o n s : 1) How do c h i l d r e n e x p l a i n d i a b e t e s from a phenomenolog ica l p e r s p e c t i v e ? 2) Is there a p a t t e r n of responses i l l u s t r a t i n g c h i l d r e n ' s concepts o f d i a b e t e s ? 3) How do c h i l d r e n ' s models o f d i a b e t e s compare to the b i o m e d i c a l model? The c h i l d ' s model of d i a b e t e s has been made e x p l i c i t by i d e n t i f y i n g c h i l d r e n ' s p e r c e p t i o n s of d i a b e t e s and o r g a n i z i n g them i n terms of the framework c a l l e d the c h i l d ' s e x p l a n a t o r y model . 85 I I I . CONCLUSIONS Based upon the data p r e s e n t e d i n Chapter Four i t can be c o n c l u d e d t h a t c h i l d r e n have t h e i r own p e r c e p t i o n s and u n d e r s t a n d i n g o f d i a b e t e s concepts and p r i n c i p l e s . Because t h i s i s the case, h e a l t h c a r e p r a c t i t i o n e r s are f a c e d w i t h i n t e r p r e t i n g between the e x p l a n a t o r y model of the c h i l d and the b i o m e d i c a l model i f they hope to communicate e f f e c t i v e l y . Each c h i l d has unique l i f e e x p e r i e n c e s hence her p e r s o n a l model of d i a b e t e s i s much more d i f f u s e than the b i o m e d i c a l model. I f a proposed h e a l t h c a r e p l a n i s to be e f f e c t i v e , the h e a l t h p r a c t i t i o n e r must attempt to u n d e r s t a n d the unique e x p e r i e n c e s and s o c i a l c o n t e x t of the c h i l d . The normative and g e n e r a l p a t t e r n s of responses i d e n t i f i e d p r o v i d e an i n t e r p r e t i v e frame f o r h e a l t h p r o f e s s i o n a l s to n e g o t i a t e shared meanings w i t h c h i l d r e n . These c o n s t i t u t e ' t y p i c a l b e l i e f s ' of c h i l d r e n , however an e x p l a n a t o r y model s h o u l d be e l i c i t e d from each c h i l d . The i n f e r r e d concepts and p r i n c i p l e s i d e n t i f i e d i n t h i s study i n d i c a t e where c h i l d r e n ' s i d e a s converge and d i v e r g e from those of the b i o m e d i c a l model. I n t e r v e n t i o n i s r e q u i r e d where the c h i l d ' s b e l i e f s 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 the n e g o t i a t i o n of a c a r e p l a n . C h i l d r e n i n t e g r a t e t h e i r own e x p e r i e n c e s and the more f o r m a l knowledge they have r e c e i v e d about d i a b e t e s i n t o t h e i r own e x p l a n a t o r y models. C h i l d r e n ' s b e l i e f s seem to be more congruent w i t h b i o m e d i c a l concepts r e g a r d i n g how b l o o d g l u c o s e 8 6 i s a f f e c t e d by i n j e c t i o n s , f o o d and a c t i v i t y , due t o t h e i r f a m i l i a r i t y w i t h t e s t i n g and t r e a t m e n t p r o c e d u r e s . C h i l d r e n ' s u n d e r s t a n d i n g d i v e r g e d f r o m the b i o m e d i c a l model where the c o n c e p t s were more a b s t r a c t or where a c t i o n s and p r o c e d u r e s had not been e x p l a i n e d or d i s c u s s e d . I t seemed t h a t c h i l d r e n had not s h a r e d many o f t h e i r b e l i e f s and i n t e r p r e t a t i o n s o f m e d i c a l c o n c e p t s w i t h h e a l t h p r o f e s s i o n a l s ( o r t h e i r f a m i l i e s ) . I n a p p r o p r i a t e a s s i m i l a t i o n o f b i o m e d i c a l c o n c e p t s was e v i d e n t from c h i l d r e n ' s e x p l a n a t i o n s o f d i a b e t e s e t i o l o g y , i n s u l i n a c t i o n , and t e s t s f o r g l y c o g y l a t e d h a e m o g l o b i n and k e t o n e s . A l t h o u g h w e l l - v e r s e d i n b l o o d t e s t i n g p r o c e d u r e s , c h i l d r e n were unaware o f the i m p a c t o f f a c t o r s o t h e r t h a n i n s u l i n , f o o d and a c t i v i t y on t h e i r b l o o d g l u c o s e l e v e l s . B ecause o f the n e g a t i v e l o n g - t e r m c o n s e q u e n c e s o f h a v i n g d i a b e t e s , c h i l d r e n were r e l u c t a n t t o d i s c u s s p o s s i b l e . c o m p l i c a t i o n s . IV. EDUCATIONAL IMPLICATIONS The p r e c e d i n g i n t e r p r e t a t i o n o f the c h i l d ' s model o f d i a b e t e s p o i n t e d out where e d u c a t i o n a l i n t e r v e n t i o n m ight be a p p r o p r i a t e . P a t t e r n s i n r e s p o n s e s i n d i c a t e d t h a t i t i s i m p o r t a n t t o : 1. Uncover a c h i l d ' s n a i v e b e l i e f s by e l i c i t i n g t h e i r e x p l a n a t o r y model b e f o r e i n t r o d u c i n g m e d i c a l c o n c e p t s and p r o c e d u r e s . C h i l d r e n ' s c o n c e p t s p r o v i d e a l o g i c a l s t a r t i n g p o i n t f o r i n t r o d u c i n g i d e a s f r o m the b i o m e d i c a l domain. T h i s i n t e r p r e t i v e p r o c e s s s h o u l d s t a r t a t the time o f d i a g n o s i s , 87 s i n c e young c h i l d r e n may f e e l they are b e i n g punished or d i d something wrong which caused them to become d i a b e t i c . I f the c h i l d ' s e x p l a n a t o r y model i s not e l i c i t e d she may not admit her n a i v e b e l i e f s once she has heard 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 b e l i e f . 2. Q u e s t i o n c h i l d r e n p e r i o d i c a l l y i n o r d e r to e v a l u a t e t h e i r b e l i e f s and d i s c u s s t h e i r e x p e r i e n c e s . Because d i a b e t e s i s a complex s u b j e c t encompassing numerous concepts and 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 , i t i s i m p e r a t i v e to d i s c o v e r c h i l d r e n ' s i n f e r e n c e s b e f o r e p r o c e e d i n g w i t h e d u c a t i o n a l i n t e r v e n t i o n s . I n a number of a r e a s , c h i l d r e n seemed to have l e a r n e d concepts by r o t e w i t h o u t u n d e r s t a n d i n g them, such as: " i n s u l i n i s l i k e a key t h a t opens the door to a c e l l " w i t h o u t u n d e r s t a n d i n g what c e l l s a r e . C h i l d r e n were not c l e a r about the r o u t e i n s u l i n t a k e s i n the body and o f t e n d i d not u n d e r s t a n d the concept of k e t o n e s . 3. P r o v i d e 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 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 sense of t h e i r w o r l d by c o n s t r u c t i n g c o n c e p t s . I t i s n e c e s s a r y to f o c u s on elements which p r o v i d e a sound b a s i s f o r f u t u r e l e a r n i n g . Any metaphor s h o u l d be used j u d i c i o u s l y . I n o r d e r m e t a p h o r i c a l 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 , they must b u i l d on c h i l d r e n ' s e x i s t i n g b e l i e f s . For example, metaphor commonly used t o e x p l a i n d i a b e t e s ( i l l u s t r a t e d i n the c h i l d r e n ' s book, Donnv and D i a b e t e s ) was i n t e r p r e t e d by one c h i l d t o mean: 88 "They say y o u r p a n c r e a s i s s l e e p i n g . I'm s u r e mine's d e a d . . . . u s e l e s s . " The f a c t t h a t t h e p a n c r e a s has o t h e r f u n c t i o n s was n o t a p p r e c i a t e d . 4 . H e l p c h i l d r e n t o u n d e r s t a n d t h e r e a s o n s f o r management a c t i v i t i e s and t e c h n i c a l p r o c e d u r e s . C h a l l e n g e a l t e r n a t e c o n c e p t i o n s and g i v e c h i l d r e n r e a s o n s b e h i n d b i o m e d i c a l b e l i e f s . For i n s t a n c e , c h i l d r e n u n d e r s t o o d the p r i n c i p l e s o f b l o o d g l u c o s e m o n i t o r i n g , i . e . a ' s n a p s h o t ' , w i t h o u t c o m p r e h e n d i n g the t h e o r y t h a t r e p e a t e d t e s t s c o u l d p r o v i d e a p a t t e r n u s e f u l f o r p l a n n i n g changes i n t r e a t m e n t . C h i l d r e n r e a l i z e d t h e i n t e r a c t i o n s o f i n s u l i n , f o o d and a c t i v i t y , but not t h a t s t r e s s and o t h e r hormonal f a c t o r s c o n t r i b u t e d t o h i g h r e a d i n g s . U n f o r t u n a t e l y , t h e term ' c h e a t i n g ' has been u s e d t o a c c o u n t f o r h i g h r e a d i n g s when t h i s m i g h t n o t have been t h e c a s e . I n a d d i t i o n , ' c h e a t i n g ' i s an i n a p p r o p r i a t e term b e c a u s e o f i t s p e j o r a t i v e and j u d g m e n t a l c h a r a c t e r . O t h e r a s p e c t s o f c h i l d r e n ' s c a r e t h a t had not been d i s c u s s e d or e x p l a i n e d i n terms t h a t c h i l d r e n c o u l d u n d e r s t a n d i n c l u d e d : HbA1C and u r i n e t e s t i n g as w e l l as the need f o r r o t a t i n g i n j e c t i o n s i t e s . I t i s a l s o i m p o r t a n t f o r h e a l t h c a r e p r o f e s s i o n a l s t o i n v e s t i g a t e a l l a s p e c t s o f d i a b e t e s c a r e , i n c l u d i n g c o m p l i c a t i o n s , what a ' c u r e ' might be and t h e i m p l i c a t i o n s o f s u c h a d i s c o v e r y . C l i n i c i a n s s h o u l d n o t assume t h a t f a m i l i e s have d i s c u s s e d t h e s e t o p i c s or e x p l a i n e d m e d i c a l c o n c e p t s and p r o c e d u r e s t o c h i l d r e n . E x p l a n a t i o n s o f m e d i c a l p r o c e d u r e s as w e l l as r u l e s or a l g o r i t h m s t h a t c o u l d be a p p l i e d 89 to t e s t i n g and treatment procedures cou ld he lp c h i l d r e n and f a m i l i e s become e f f e c t i v e p a r t n e r s i n the care p r o c e s s . 5. I d e n t i f y c h i l d r e n ' s p e r s o n a l p e r s p e c t i v e and t r y to e m p a t h i z e w i t h t h e i r e x p e r i e n c e s . C o n s i d e r the e m o t i o n a l as w e l l as the i n t e l l e c t u a l a spec t s i n v o l v e d i n u n d e r s t a n d i n g a c h r o n i c i l l n e s s . C h i l d r e n need to f e e l secure enough to express t h e i r own f e e l i n g s and i d e a s about d i a b e t e s . When asked to e x p l a i n d i a b e t e s , c h i l d r e n o f t e n r e s o r t e d to the b i o m e d i c a l concept s they had l e a r n e d through d i a b e t e s e d u c a t i o n . I t i s impor tant f o r c h i l d r e n to f e e l tha t d i a b e t e s i s an i n t e g r a t e d par t of themselves i n order to a t t a i n a p o s i t i v e d i a b e t i c i d e n t i t y . T h i s process should beg in at d i a g n o s i s , h e l p i n g c h i l d r e n to cope wi th t h e i r f e e l i n g s of g r i e f , f e a r and anger . C h i l d r e n f e e l s t i g m a t i z e d and do not want to be d i f f e r e n t and l e a r n i n g t h e i r unique cop ing s t y l e s i s i m p o r t a n t to communicat ion. Through ' empath ic w i t n e s s i n g ' h e a l t h p r o f e s s i o n a l s can unders tand what the c h i l d e x p e r i e n c e s through t h e i r r e a c t i o n s , t h e i r h y p e r g l y c e m i c e p i s o d e s , the c o n s t r a i n t s o f m e d i c a l p r o c e d u r e s and demands f o r c o m p l i a n c e . P e r i o d i c r e a s s e s s m e n t s o f meal p l a n s and i n s u l i n adjustments are necessary to meet the needs o f the growing c h i l d . The onus i s on the h e a l t h p r a c t i t i o n e r to t r e a t both the d i sease and the i l l n e s s . 7 . Promote the p o s i t i v e aspec t s o f a d i a b e t e s regimen and f o c u s on a b i l i t i e s r a t h e r than h a n d i c a p s . C h i l d r e n e x p r e s s e d the b e l i e f that h e a l t h was more than the absence of d i s ease and the t h e r a p e u t i c v a l u e of e x e r c i s e to t h e i r p s y c h o l o g i c a l w e l l - b e i n g . C h i l d r e n ' s p a r t i c i p a t i o n i n a c t i v i t i e s should be encouraged. In a d d i t i o n , p u b l i c awareness about the causes and consequences o f d i a b e t e s needs to be i n c r e a s e d . C h i l d r e n t a l k e d about be ing ' t e a s e d ' or l e f t ou t ' and o ther c h i l d r e n thought that d i a b e t e s was c o n t a g i o u s . I t i s important to d i m i n i s h the s t igma a t t a c h e d to h a v i n g d i a b e t e s and he lp o t h e r s to empathize wi th those who have a c h r o n i c i l l n e s s . V. RECOMMENDATIONS FOR FUTURE RESEARCH Based upon the f i n d i n g s and c o n c l u s i o n s t h i s e x p l o r a t o r y s t u d y , a number o f recommendations are d i r e c t e d toward i n c r e a s i n g our u n d e r s t a n d i n g o f c h i l d r e n ' s p e r s p e c t i v e of d i a b e t e s and i m p r o v i n g c h i l d r e n ' s comprehension of medica l knowledge. Sugges t ions i n t h i s r e g a r d i n c l u d e : 1. Conduct ing f u r t h e r r e s e a r c h i n t o c h i l d r e n ' s b e l i e f s u s i n g a l a r g e r sample that would q u a n t i f y v a r i a b l e s such as age and gender d i f f e r e n c e s i n c h i l d r e n ' s mode l s ; and the o p t i m a l time f o r e d u c a t i o n g i v e n d i f f e r e n t ages of onset and o t h e r e n v i r o n m e n t a l f a c t o r s . 2 . Deve lop ing i n t e r p r e t i v e i n t e r v i e w techn iques to i d e n t i f y c h i l d r e n ' s b e l i e f s about d i a b e t e s and c o u n s e l l i n g procedures to n e g o t i a t e between e x p l a n a t o r y models . For example an t e c h n i q u e , u s i n g a number of metaphor ic q u e s t i o n s or the ' empath ic w i t n e s s i n g ' process cou ld be used to e l i c i t each c h i l d ' s e x p l a n a t o r y model of d i a b e t e s . 9 1 3 . C a r r y i n g out an indepth case s tudy , i n t e r v i e w i n g the d i a b e t i c , c h i l d , f a m i l y and h e a l t h c a r e team, p o s s i b l y c o l l e c t i n g l o n g i t u d i n a l d a t a . T h i s s tudy was unab le to f o l l o w c h i l d r e n from d i a g n o s i s or get to know them p e r s o n a l l y as a c l i n i c i a n or parent wou ld . 4. Development of g r a p h i c sof tware to he lp a n a l y z e b lood g lucose p a t t e r n s and p r e d i c t i o n s through a computer game. S ince c h i l d r e n o f t en have access to computers and l e a r n through the i n t e r a c t i v e p r o c e s s , t h i s would p r o v i d e an o p p o r t u n i t y for them to unders tand the t h e o r i e s behind c o n t r o l e f f o r t s and he lp them l e a r n to make management d e c i s i o n s and g a i n independence . BIBLIOGRAPHY A i n s l i e , M . B . ( 1 9 8 3 ) "Why t i g h t d i a b e t e s c o n t r o l s h o u l d be a p p r o a c h e d w i t h c a u t i o n . " P o s t g r a d u a t e M e d i c i n e , 75(4), 9 1 - 9 6 . A j z e n , I. and F i s h b e i n , M. ( 1 9 8 0 ) U n d e r s t a n d i n g A t t i t u d e s  and P r e d i c t i n g S o c i a l B e h a v i o r . E n g l e w o o d C l i f f s , New J e r s e y : P r e n t i c e - H a l l , I n c . A l l e n , D . , A f f l e c k , G . , T e n n e n , H . , M c G r a d e , B . J . and R a t z a n , S . ( 1 9 8 4 ) " C o n c e r n s o f C h i l d r e n w i t h A C h r o n i c I l l n e s s : A C o g n i t i v e - D e v e l o p m e n t a l S t u d y o f J u v e n i l e D i a b e t e s . " C h i l d : C a r e , H e a l t h and D e v e l o p m e n t , 1 0 ( 4 ) , 2 1 1 - 2 1 8 . A m a r a s i n g h a m R h o d e s , L . ( 1 9 8 0 ) "Movement Among H e a l e r s i n S r i L a n k a : A Case S t u d y o f a S i n h a l e s e P a t i e n t " , C u l t u r e , M e d i c i n e and P s y c h i a t r y , 4 ( 1 ) , 7 1 - 9 2 . A n d e r s o n , R . M . ( 1 9 8 5 ) " I s t h e P r o b l e m o f N o n c o m p l i a n c e A l l i n Our H e a d s ? " The D i a b e t e s E d u c a t o r , , 1 1 ( 1 ) , 3 1 - 3 4 . . ( 1 9 8 3 ) " D e f i n i n g and E v a l u a t i n g P a t i e n t E d u c a t i o n . " D i a b e t e s C a r e , 6 ( 6 ) , 6 1 9 - 6 2 0 . A r k y , R . A . ( 1 9 8 3 ) " P r e v e n t i o n and T h e r a p y o f D i a b e t e s M e l l i t u s . " N u t r i t i o n R e v i e w s , 4 1 ( 6 ) , 1 6 5 - 1 7 3 . A r m s t r o n g , D. ( 1 9 8 4 ) " T h e P a t i e n t ' s V i e w . " S o c i a l S c i e n c e and M e d i c i n e . 1 8 ( 9 ) , 7 3 7 - 7 4 4 . A r y , D . V . , T o o b e r t , D . , W i l s o n , W . , and G l a s g o w , R . E . ( 1 9 8 6 ) " P a t i e n t P e r s p e c t i v e on F a c t o r s C o n t r i b u t i n g t o N o n -A d h e r e n c e t o D i a b e t e s R e g i m e n . " D i a b e t e s C a r e T 9 ( 2 ) , 1 6 8 - 1 7 2 . A u s u b e l , D. P. ( 1 9 6 8 ) E d u c a t i o n a l P s y c h o l o g y : A C o g n i t i v e  V i e w . New Y o r k : H o l t , R i n e h a r t and W i n s t o n . . ( 1963) The p s y c h o l o g y o f M e a n i n g f u l V e r b a l L e a r n i n g . New Y o r k : G r u n e and S t r a t t o n . A u l t , C . R . , N o v a k , J . D . , & G o w i n , D . B . ( 1 9 8 4 ) " C o n s t r u c t i n g Vee Maps f o r C l i n i c a l I n t e r v i e w s on M o l e c u l e C o n c e p t s . " S c i e n c e E d u c a t i o n . 6 8 ( 4 ) , 4 4 1 - 4 6 3 . B e c k e r , M . H . and J a n z , N . K . ( 1 9 8 5 ) " T h e H e a l t h B e l i e f M o d e l A p p l i e d t o U n d e r s t a n d i n g D i a b e t e s Reg imen C o m p l i a n c e . " The D i a b e t e s E d u c a t o r , 1 1 ( 1 ) , 4 1 - 4 7 . 93 Becker, M.H. and Maiman, L.A, (1975) "Sociobehavioral Determinants of Compliance with Health and Medical Care Recommendations.n Medical Care, 1-3(1) , 10-24. Bibace, R. and & Walsh, M.E. (Eds.) (1981) New Directions for  Child Development; Children's Conceptions of Health  and I l l n e s s and Bodily Functions No. 14. San Francisco, Jossey-Bass. Biermann, J. and Toohey, B. (1980) "Emotional Aspects: The Patient's View." The Diabetes Educator, 6(4), 16-19. Boulding, K.W. (1976) The Image: Knowledge i n L i f e and Society. Ann Arbor: The University of Michigan Press. Bouras, M. and Czernichow, P. (1982) "Relationship Between the Diabetic Child and His I l l n e s s : A Psychoanalytical Study." In Z. Laron and A. Galatzer (Eds.) "Psycho-l o g i c a l Aspects of Diabetes i n Children and Adolescents. Pediatric and Adolescent Endocrinology f 10, 25-26. Brewster, A.B. (1982) "Chronically 111 Hospitalized Children's Concepts of Their I l l n e s s . " Pediatrics, 69(3), 355-362. Brown, A.J. (1983) "Diabetic School-Age Children's Knowledge and Management of their Disease as i t Relates to the Adequacy of Self-Concept." Unpublished doctoral diss e r t a t i o n , University of Pittsburgh. Burnet, R. and Butler, R. (1984) "How Patients Manage Diabetes." Diabetes Care T 7(6), 609-610. Canadian Diabetes Association (1982) A Special Report on  Diabetes M e l l i t u s . Toronto: Canadian Diabetes Association. Campbell, J.D. (1975) "Il l n e s s Is a Point of View: The Development of Children's Concepts of I l l n e s s . " Child Development, 46(1), 92-100. Catherall, R.W. (1981) "B e l i e f s about the Human Circulatory System." Unpublished master's thesis. University of B r i t i s h Columbia, Vancouver, B.C. Champagne, A. (1980) "Factors Influencing Learning of C l a s s i c a l Mechanics." American Journal of Physics, 48, 1974-1079. Chrisman, N.J. and Kleinman, A. (1983) "Popular Health Care, Social Networks and Cultural Meanings: The Orientation of Medical Anthropology." In. D. Mechanic (Ed.) Handbook of Health, Health Care and the Helping  Professions. New York: Free Press. 94 C o h e n , D . H . and S t e r n , V . (1978) O b e r v i n g and R e c o r d i n g t h e  B e h a v i o r o f Young C h i l d r e n . 2nd E d i t i o n . New Y o r k : T e a c h e r s ' C o l l e g e P r e s s . C r a i g , 0. (1982) C h i l d h o o d D i a b e t e s : The F a c t s . O x f o r d : O x f o r d U n i v e r s i t y P r e s s . C r i d e r , C . (1981) " C h i l d r e n ' s C o n c e p t i o n s o f t h e Body I n t e r i o r . " I n R. B i b a c e and M. W a l s h ( E d s ) . New  D i m e n s i o n s f o r C h i l d D e v e l o p m e n t : C h i l d r e n ' s  C o n c e p t i o n s o f H e a l t h , I l l n e s s and B o d i l y F u n c t i o n s . No 14. San F r a n c i s c o : J o s s e y - B a s s . D a v i s , D . M . , S h i p p , J . C . and P a t t i s h a l l , E . G . (1965) " A t t i t u d e s o f D i a b e t i c B o y s and G i r l s T o w a r d s D i a b e t e s . " D i a b e t e s , 14(2), 106-109. D r a s h , A . L . (1978) " M a n a g i n g t h e C h i l d w i t h D i a b e t e s M e l l i t u s . " P o s t g r a d u a t e M e d i c i n e , 63(6), 85-92. D r i v e r , R. and E a s l e y , J . (1978) " P u p i l s and P a r a d i g m s : a R e v i e w o f t h e L i t e r a t u r e R e l a t e d t o C o n c e p t D e v e l o p -ment i n A d o l e s c e n t S c i e n c e S t u d e n t s . " S t u d i e s i n  S c i e n c e E d u c a t i o n , 5, 61-84. D u c a t , L . and C o h e n , S . S . (1983) D i a b e t e s : A New and C o m p l e t e G u i d e t o H e a l t h i e r L i v i n g f o r P a r e n t s ,  C h i l d r e n and Young A d u l t s w i t h I n s u l i n D e p e n d e n t  D i a b e t e s . New Y o r k : H a r p e r & Row. E i s e n b e r g , L . and K l e i n m a n , A . ( E d s . ) (1981) The R e l e v a n c e  o f S o c i a l S c i e n c e f o r M e d i c i n e . D o r d r e c h t , H o l l a n d : D. R e i d e l . E i s e n b e r g , L . (1977) " D i s e a s e and I l l n e s s : D i s t i n c t i o n B e t w e e n P r o f e s s i o n a l and P o p u l a r I d e a s o f S i c k n e s s . " C u l t u r e , M e d i c i n e and P s y c h i a t r y , 1(1), 9-23. E i s e r , C . , P a t t e r s o n , D. and E i s e r , J . R . (1983) " C h i l d r e n ' s K n o w l e d g e o f H e a l t h and I l l n e s s : I m p l i c a t i o n s f o r H e a l t h E d u c a t i o n . " C h i l d : C a r e , H e a l t h and D e v e l o p - m e n t . 9, 285-292. E n g e l , G . L . (1977) " T h e Need f o r a New M e d i c a l M o d e l : A C h a l l e n g e f o r B i o m e d i c i n e . " S c i e n c e , 196 , 129-196. E r a k e r , S . A . , K i r s c h t , J . P . and B e c k e r , M . H . (1984) " U n d e r -s t a n d i n g and I m p r o v i n g P a t i e n t C o m p l i a n c e . " A n n a l s o f  I n t e r n a l M e d i c i n e , 100 , 258-268. E t z w i l e r , D . D . (1984) " D i a b e t e s E d u c a t i o n : The R e a s o n f o r I t s E x i s t e n c e . " The D i a b e t e s E d u c a t o r , 1 0 ( S p e c i a l ) , 15-18. . ( 1983) "Patient Management and Education." In M. Ellenberg and H. Ri f k i n (Eds.) Diabetes  Me l l i t u s : Theory and Practice. 3 r d E d i t i o n . New Hyde Park, N.Y.: Medical Examination Publishing Co., Inc. __. ( 1962a) "Juvenile Diabetes and Its Management: Family, Social and Academic Implications." Journal of  the American Medical Association, 181(4), 304-307. , (1962b) "What the Juvenile Diabetic Knows About His Disease." Pediatrics, 29, 135-141. Glasgow, R.E. ( 1 9 8 3 ) "Barriers to the Adherence of Persons with Insulin Dependent Diabetes M e l l i t u s . " Paper presented at the 4 3 r d S c i e n t i f i c Meeting of the American Diabetes Association, San Antonio, Texas. Glasgow, R.E. and McCaul, K.D. (1982) "Psychological Issues i n Diabetes: A Different Approach." Letters to the Editor. Diabetes Care. 5(6), 6 4 5 - 6 4 6 . Good, B.J. and Good, M.J.D. (1981) "The Meaning of Symptoms: A Cultural Hermeneutic Model for C l i n i c a l Practice." In L. Eisenberg and A. Kleinman, (Eds.), The Relevance of  Social Science for Medicine. "Culture, I l l n e s s and H e a l i n g — Studies i n Comparative Cross-Cultural Research" 1, 165-196. Dordrecht, Holland: Reidel Pubishing Co. Good, B.J. (1977) "The Heart of What's the Matter: The Semantics of I l l n e s s i n Iran." Culture, Medicine  and Psychiatry, 1, 25-58. Gould, J.E. (1985) "Psychosocial Factors i n the Control and Management of Juvenile Diabetes." Unpublished doctoral d i s s e r t a t i o n . The Catholic University of America. Gowin, D.B. (1981) Educating. Ithaca: Cornell University Press. Groen, J.J. and Pelse, H.E. (1982) "Newer Concepts of Teaching Learning and Education and Their Application to the Patient-Doctor Co-Operation i n the Treatment of Diabetes M e l l i t u s . " Pediatric and Adolescent Endo- crinology, 10 , 168-177. Gratz, R.R. and P i l i a v i n , J.A. (1980) "What Makes Kids Sick: Children's B e l i e f s about the Causative Factors of I l l n e s s . " Children's Health Care. 12(4), 156-162. Gross, A.M., Heimann, L., Shapiro, R. and Schultz, R.M. ( 1 9 8 3 ) "Children with Diabetes--Social S k i l l s Training and Hemoglobin A1C Levels." Behavior Modification, 7(2), 151-164. 96 Gross, A.M. and Johnson, W.G. (1981) "The Diabetes Assertive-ness Test: A Measure of Social Coping S k i l l l s i n Pre-Adolescent Diabetics." The Diabetes Educator, 7(2), 26-27. Grossman, H., Brink, S. and Hauser, S. (1983) "Gender Differences i n the Relationship Between S e l f - E f f i c a c y B e l i e f s and Metabolic Control in Adolescents." Paper presented at the 43rd S c i e n t i f i c Meeting of the American Diabetes Association, San Antonio, Texas. Gurwitsch, A. (1954) "The phenomenological and the psychological approach to consciousness. Philosophy and Phenomenological Research, 15, 303-319. Hamburg, D.A., E l l i o t t , G.R. and. Parron, D.L. (Eds.) (1983) Health and Behavior: Frontiers of Researach i n the  Behavioral Sciences. Washington, D.C.: National Academy Press. Hamburg, B.A., Lipsett, L.F., Inoff, G.E. and Drash, A.L. (1980) Behavioural and Psychosocial Issues i n Diabetes. National Institutes of Health Publication No.80-1993. Washington, D.C.: Government Printing Office (reference i n Allen) Johnson, S.B., Pollack, T., S i l v e r s t e i n , J.H., Rosenbloom, A.L., S p i l l a r , R., McCallum, M. and Harkavy, J. (1982a) "Cognitive and Behavioral Knowledge About Insulin-Dependent Diabetes Among Children and Parents." Pediatrics, 69(6), 708-713. Johnson, S.B. and Rosenbloom, A.L. (1982b) "Behavioral Aspects of Diabetes Mellitus i n Childhood and Adolescence." Psychiatric C l i n i c s of North America, 5(2), 357-369. Johnson, S.B. (1980) "Psychosocial Factors i n Juvenile Diabetes: A Review." Behavioral Medicine, 3, 95-116. Kessler, J.W. (1966) Psvchopathologv of Childhood. Englewood C l i f f s , N.J.: Prentice H a l l . Kelly, G.A. (1955) The Psychology of Personal Constructs. Volume 1 & 2. New York: W. W. Norton and Co. Kleinman, A. (1986) "Explaining and Interpreting Disorder: Handling Discrepant Views of Health and Disease i n the Health Care System." Paper presented at the Cecil and Ida Green Lecture Series, University of B r i t i s h Columbia, Vancouver. 97 Kleinman, A. (1980) Patients and Healthers i n the Context of Culture. Berkeley: University of C a l i f o r n i a Press. Kleinman, A. (1978) "Concepts and a Model for the Comparison of Medical Systems as Cultural Systems." Social  Science and Medicine, 12 , 85-93. Kleinman, A., Eisenberg, L. and Good, B. (1978) "Culture, I l l n e s s and Care: C l i n i c a l Lessons from Anthropologic and Cross-Cultural Research." Annals of Internal  Medicine. 88(2), 251-258. Koski, M.L. (1982) "Formation of Positive Diabetic Identity." Psychological Aspects of Diabetes i n Children and Adolescents. Pediatric and Adolescent Endocrinology, 10 , 9-11. Kosub, S.M. and Kosub, C. (1982) "Assessing Perceptions of Stress i n Diabetic Children." Children's Health Care. 1.1(1), 4-8. Kugelman, R. and Bensinger, R.E. (1983) "Metaphors of Glaucoma." Culture, Medicine and Psychiatry. 7 (3), 313-328. Kuhn, T. (1977) "Two Sides of Science." In M. Nystrand (Ed.) Language As A Way of Knowing; A Book of Readings. Symposium Series 18. Toronto: The Ontario Institute of Studies i n Education. Labinowicz, E. (1980) The Piaget Primer: Thinking. Learning. Teaching. Menlo Park, CA.: Addison-Wesley Publishing Co. La Greca, A.M. and Hanna, A.C. (1983) "Diabetes-Related Health B e l i e f s i n Children and Their Mothers: Implications for Treatment." Paper presented at the S c i e n t i f i c Meeting of the American Diabetes Association, San Antonio, Texas. Lakoff, G. and Johnson, M. (1980) Metaphors We Live By. Chicago: University of Chicago Press. Lebovitz, H.E. (1984) "Etiology and Pathogenesis of Diabetes M e l l i t u s : Symposium on Juvenile Diabetes." The Pediatric C l i n i c s of North America. 31(3) 521-530. Lipowski, Z.J. (1973) "Psychosomatic Medicine In a Changing Society." Comprehensive Psychology. 4, 203-2 M i s h l e r , E . , A m a r a s i n g h a m , L . R . , H a u s e r , S . T . , O s h e r s o n , S . D . , W a x i e r , N . E . and L i e m , R. ( 1 9 8 1 ) S o c i a l C o n t e x t s  o f H e a l t h , I l l n e s s and P a t i e n t C a r e . New Y o r k : C a m b r i d g e U n i v e r s i t y P r e s s . N a t a p o f f , J . N . ( 1 9 7 8 ) " C h i l d r e n ' s V i e w s o f H e a l t h : A D e v e l o p m e n t a l S t u d y . " A m e r i c a n J o u r n a l o f P u b l i c  H e a l t h . 6 8 ( 1 0 ) , 9 9 5 - 1 0 0 0 . N a t h a n , S . W . and G o e t z , P. ( 1 9 8 4 ) " P s y c h o s o c i a l A s p e c t s o f C h r o n i c I l l n e s s : G r o u p I n t e r a c t i o n s i n D i a b e t i c G i r l s . " J o u r n a l o f The A s s o c i a t i o n f o r t h e C a r e o f C h i l d r e n ' s  H e a l t h . 1 3 ( 1 ) , 2 4 - 3 0 . N g , L . K . Y . , D a v i s , D . L . , M a n d e r s c h e i d , R.W. and E l k e s , J . ( 1 9 8 1 ) " T o w a r d a C o n c e p t u a l F o r m a t i o n o f H e a l t h and W e l l - B e i n g . " I n L . K . Y . Ng and D . L . D a v i s S t r a t e g i e s  f o r P u b l i c H e a l t h and P r e v e n t i n g D i s e a s e . New Y o r k : Van N o s t r a n d R e i n h o l d C o . N o v a k , J . D . ( 1 9 8 2 ) L e a r n i n g To L e a r n . New Y o r k : B a s i c B o o k s . O r n s t e i n , R . E . ( 1 9 7 2 ) Two S i d e s o f t h e B r a i n : From t h e  P s y c h o l o g y o f C o n s c i o u s n e s s . W. H. F r e e m a n and C o . P e r r i n , E . C . and G e r r i t y , S . ( 1 9 8 1 ) " T h e r e ' s a Demon i n Y o u r B e l l y : C h i l d r e n ' s U n d e r s t a n d i n g o f I l l n e s s . " P e d i a t r i c s , . 6 7 ( 6 ) , 841 - 8 4 9 . P e t e r s , V . ( 1 9 8 0 ) " M a k i n g B e h a v i o r a l O b j e c t i v e s M e a n i n g f u l . " The D i a b e t e s E d u c a t o r , , 6 ( 3 ) , 3 4 - 3 5 . P i a g e t , J . ( 1 9 6 9 ) The C h i l d ' s C o n c e p t i o n o f t h e W o r l d . T o t o w a , N . J . : L i t t l e f i e l d , Adams and C o . ( F i r s t p u b l i s h e d i n 1 9 2 9 ) . P o s n e r , T . ( 1 9 7 7 ) " M a g i c a l E l e m e n t s i n O r t h o d o x M e d i c i n e : D i a b e t e s as a M e d i c a l T h o u g h t S y s t e m . " In R. D i n g w a l l , C . H e a t h , M. Reed and M. S t a c e y ( E d s . ) H e a l t h C a r e and  H e a l t h K n o w l e d g e . L o n d o n : Croom H e l m . R e s l e r , M. M. ( 1 9 8 3 ) " T e a c h i n g S t r a t e g i e s t h a t P r o m o t e A d h e r e n c e . " N u r s i n g C l i n i c s o f N o r t h A m e r i c a , 1 8 ( 4 ) , 7 9 9 - 8 1 1 . R h o d e s , L . A . ( 1 9 8 4 ) " " T h i s W i l l C l e a r Y o u r M i n d " : The Use o f M e t a p h o r s f o r M e d i c a t i o n i n P s y c h i a t r i c S e t t i n g s . " C u l t u r e , M e d i c i n e and P s y c h i a t r y , 8, 4 9 - 7 0 . R i i s , U . , G o r a n s s o n , A . , L a r s s o n , Y , L u d v i g s s o n and C o r n e l l , E . ( 1 9 8 2 ) " T h e E d u c a t i o n o f P a t i e n t s 10-14 Y e a r s O l d . " P e d i a t r i c and A d o l e s c e n t E n d o c r i n o l o g y , 10 , 1 4 7 - 1 5 3 . S a n g l a d e , A . , B o u r a s , M. and C z e r n i c h o w , P. ( 1 9 8 2 ) "How 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 R e l a t e t o T h e i r B o d y , w P s y c h o l o g i c a l A s p e c t s o f D i a b e t e s i n C h i l d r e n and A d o l e s c e n t s . P e d i a t r i c and A d o l e s c e n t E n d o c r i n o l o g y , 10 , 12-14. S i m s , D . F . ( E d ) ( 1 9 8 0 ) D i a b e t e s ; R e a c h f o r H e a l t h and  F r e e d o m . S t . L o u i s : C . V . M o s b y . S o n t a g , S . ( 1 9 7 7 ) I l l n e s s a s M e t a p h o r . T o r o n t o : McGraw-H i l l . S p e n c e r , M . L . and E t z w i l e r , D . D . ( 1 9 8 5 ) " C h i l d h o o d D i a b e t e s : F a m i l y - O r i e n t e d A p p r o a c h t o M a n a g e m e n t . " P o s t g r a d u a t e  M e d i c i n e . 7 7 ( 2 ) , 1 18-126. S t e w a r d , M . S . and S t e w a r d , D . S . ( 1 9 8 1 ) " C h i l d r e n ' s C o n c e p t i o n s o f M e d i c a l P r o c e d u r e s . " In R. B i b a c e and M. W a l s h ( E d s . ) New D i r e c t i o n s f o r C h i l d D e v e l o p m e n t :  C h i l d r e n ' s C o n c e p t i o n s o f H e a l t h , I l l n e s s and B o d i l y  F u n c t i o n s . No . 14. San F r a n c i s c o : J o s s e y - B a s s . S u l w a y , M . , T u p l i n g , H . , Webb, K. and H a r r i s , G . ( 1 9 8 0 ) "New T e c h n i q u e s f o r C h a n g i n g C o m p l i a n c e i n D i a b e t e s . " D i a b e t e s C a r e , 3 ( 1 ) , 1 0 8 - 1 1 1 . W e s t , L . H . T . and P i n e s , A . L . ( E d s . ) ( 1 9 8 5 ) C o g n i t i v e  S t r u c t u r e and C o n c e p t u a l C h a n g e . O r l a n d o , F L : A c a d e m i c P r e s s , I n c . W h i t t , J . K . , D y k s t r a , W. and 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 D e v e l o p m e n t . " C l i n i c a l P e d i a t r i c s , 1 8 ( 6 ) , 327, 3 3 1 - 3 3 2 , 3 3 4 - 3 3 5 , 3 3 9 . W i l l i a m s o n , P . R . and M c C a u l e y , E . ( 1 9 8 4 ) "On B e i n g a D i a b e t i c P a t i e n t : A S i m u l a t e d E x p e r i e n c e . " F a m i l y  S y s t e m s M e d i c i n e , 2 ( 4 ) , 4 0 9 - 4 1 9 . 1 0 0 APPEHDIX OHE GOWIN*S KNOWLEDGE VEE (Arrows suggest a c t i v e i n t e r p l a y o f the two domains) CONCEPTUAL DOMAIN WORLD VIEWS (e.g. n a t u r e i s and knowable) PHILOSOPHIES (e.g . Human U n d e r s t a n d i n g by Toulmin) THEORIES ( l o g i c a l l y r e l a t e d s e t s o f concepts p e r m i t t i n g p a t t e r n s of r e a s o n i n g ) PRINCIPLES ( c o n c e p t u a l r u l e s g o v e r n i n g the l i n k i n g o f p a t t e r n s i n e v e n t s , 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, ( i d e a s which support r e l i a b l e t h e o r y but w i t h o u t d i r e c t r e f e r e n t i n e v e n ts 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 ' p a t t e r n s t a t e m e n t s ) 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 shared s o c i a l l y ) METHODOLOGICAL AID F A C T U A L D O M A I H VALUE CLAIMS (th e w o r t h , 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 to t e l l i n g q u e s t i o n s , produced i n the c o n t e n t o f i n q u i r y a c c o r d i n g t o e x p l i c i t c r i t e r i a ) INTERPRETATIONS EXPLANATIONS AND GENERALIZATIONS ( p r o d u c t of methodology and p r i o r knowledge) RESULTS ( r e p r e s e n t a t i o n of the data i n t a b l e s , graphs, c h a r t s ) ORDERED FACTS ( t r a n s f o r m a t i o n s governed by the o r y or measurement and c l a s s i f i c a t i o n ) } FACTS ( c o n c l u s i o n t h a t r e c o r d s r e c o r d e v e nts of i n t e r e s t ) RECORDS OF EVENTS EVENTS (phenomena of i n t e r e s t apprehended through concepts 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 TWO LETTER OF PARENTAL ADD GUARDIAN CONSENT TO PARENTS AND CHILDREN: We are 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 workers l e a r n more about the d i a b e t e s e x p e r i e n c e . We are t a l k i n g t o young people who have d i a b e t e s and tape-r 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 t o c h i l d r e n alone h e l p s us t o understand what i t i s l i k e to have d i a b e t e s . Below i s a l i s t of 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. I f a c h i l d doesn't want to t a l k o r w i s h e s t o end the c o n v e r s a t i o n at any p o i n t , t h a t i s h i s or her c h o i c e . T o p i c s 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 a n o ther c h i l d about d i a b e t e s Having 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 sugar T e s t i n g blood sugar G i v i n g i n j e c t i o n s Comparisons to o t h e r 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 , boys' and g i r l s ' names w i l l not be used. We p l a n to share the r e s u l t s of t h i s study w i t h you, and thank you f o r f o r your 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 o f E d u c a t i o n U n i v e r s i t y o f B r i t i s h Columbia C h i l d ' s name: I consent f o r my c h i l d to p a r t i c i p a t e i n t h i s s t u d y . P a r e n t ' s s i g n a t u r e : 102 APPENDIX THREE CAMP QUESTIONS AND AHSWERS ROLE PLAT SCENARIOS LISTS OF TERMS DSED TO EXPLAIN DIABETES S e s s i o n 1 S e s s i o n 2 normal i n s u l i n pancreas needles t e s t i n g B c e l l s no cure s c i e n t i f i c r e a c t i o n u r i n e d i e t d i a b e t e s m e l l i t u s c o n t r o l u n c o n t r o l l e d c h e a t i n g low b lood sugar h i g h b lood sugar i n s u l i n n e e d l e s . d i e t e x e r e i s e sugar r e a c t i o n b lood b a l a n c i n g foods h igh b lood sugar low b lood sugar pancreas IDDM u r i n e c o n t r o l balance hypoglycemia h y p e r g l y c e m i a NUTRITIONAL PURSUIT GAME: SAMPLE QUESTIONS 1. How many teaspoons o f sugar are there i n 4 ounces of orange j u i c e ? 2. When you e a t , what happens to your b lood sugar . 3 . A morning snack i s most impor tant i f you take what type of i n s u l i n ? 4. I f you have too much i n s u l i n and not enough food , your b lood sugar w i l l b e . . . . 5. Carbohydrate i s our main source of energy . True or f a l s e ? 6. Name a food tha t i s a good source of v i t a m i n C. 7 . I f y o u ' r e g o i n g h i k i n g and c a n ' t take m i l k a l o n g , what shou ld you do to r e p l a c e one m i l k c h o i c e ? 103 ROLE PLAY SCENARIOS Role P l a v 1 : "Whv Me?" The nurse or d o c t o r act as the newly-d iagnosed d i a b e t i c , w i t h the campers as n u r s e , d o c t o r , d i e t i t i a n , mother and f a t h e r . The s e t t i n g i s i n the h o s p i t a l where the parents are w o r r i e d because t h e i r c h i l d has been l o s i n g we ight , i s c o n s t a n t l y t h i r s t y and go ing to the washroom and d o e s n ' t f e e l w e l l . The doc tor t e l l s the f a m i l y the c h i l d has d i a b e t e s . The nurse demonstrates i n s u l i n i n j e c t i o n s (preceded by b lood g lucose m o n i t o r i n g , i f time p e r m i t s ) . The d i e t i t i a n e x p l a i n s the e f f e c t d i e t has on b lood g l u c o s e . The f a m i l y asks many q u e s t i o n s , i n c l u d i n g : "Why d i d t h i s happen?" and "What can we do?" Role P lav 2: "What do People Know?" Campers act as a d i a b e t i c and f r i e n d s at a candy s t o r e . D i s c u s s i o n s f o l l o w when the f r i e n d s l e a r n tha t one c h i l d i s a d i a b e t i c and i s n ' t suppposed to eat candy. The d i a b e t i c e x p l a i n s the r o l e of sugar i n d i a b e t e s . Role P lav 3 : "Be a Good S p o r t " A k i d wi th d i a b e t e s wants to go on a soccer t r i p . H i s / h e r parent s d o n ' t want to send the c h i l d because they are a f r a i d the team won't be a b l e to manage. The coach knows n o t h i n g about d i a b e t e s . The d i a b e t i c c h i l d has to convince h i s parents and the coach i t i s safe to go on the t r i p and tha t s /he , the coach and team can p lan ahead and handle r e a c t i o n s . 104 APPENDIX FOUR DEVELOPMENT OF INTERVIEW FORMAT C h i l d r e n ' s Terms and Ideas Used To E x p l a i n D i a b e t e s Kleinman's E x p l a n a t o r y Model Category I n t e r v i e w Q u e s t i o n and Probes P i c t u r e Pancreas stopped E t i o l o g y Why does she t h i n k she got d i a b e t e s ? G i r l i n h o s p i t a l bed How does she f e e l ? What would she ask you? What do you remember? Dis e a s e Course of s i c k n e s s / s e v e r i t y / type of s i c k r o l e What i s d i a b e t e s ? People w i t h d i a b e t e s Tease What problems do you have because you are d i a b e t i c ? What do people ask you about d i a b e t e s ? When would a d i a b e t i c f e e l l i k e t h i s ? G i r l s t a l k i n g i n a group /or boy La u g h i n g / Frowning/ C r y i n g / Boy w i t h woman over desk Are t h e r e t h i n g s you wonder about? C h i l d l o o k i n g up t o mother Do f r i e n d s w i t h d i a b e t e s t h i n k the same? Are t h e r e t h i n g s you can't do? What would you ( o t h e r s ) l i k e t o l e a r n about d i a b e t e s ? F a m i l y l o o k i n g a t book T h i s man has had d i a b e t e s f o r 50 ye a r s , What has he l p e d him l i v e t h a t l o n g ? What would a cure be? Old man d r i n k i n g t e a P a t h o p h y s i o l o g y ( E f f e c t s on body) What would t h a t mean f o r you? Why do you t e s t your blood? B e f o r e you t e s t can you t e l l what you're g o i n g t o be? What are your b l o o d t e s t s supposed to 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 bloo d t e s t s a re h i g h ? B l o o d t e s t i n g equipment Boy w r i t i n g i n book Mother and daughter U r i n e t e s t s Low b l o o d sugar Hypoglycemia High b l o o d sugar H y p e r g l y c e m i a Onset of Symptoms I n s u l i n Needles Treatment D i e t No sugar B i r t h d a y s / Hallowe» en E x e r c i s e Do you t e s t your u r i n e ? Why? What are keto n e s ? Box of Keto-d i a s t i x What i s i t l i k e when you are low? B l o o d g l u c o s e monitor What i s i t l i k e when you are h i g h ? When would your b l o o d sugar be the h i g h e s t ? What i s i n s u l i n d o i n g i n s i d e her body? Boy g i v i n g n eedle to d o l l T e l l me about Boy the d i a b e t i c e a t i n g way o f e a t i n g What do you do a t b i r t h d a y C h i l d r e n a t p a r t y What s p o r t s / games do you p l a y ? S p o r t s / k i d s p l a y i n g Any r u l e s you have l e a r n e d about s p o r t s ? 1 07 APPENDIX F I V E INTERVIEW 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 people l e a r n more about d i a b e t e s . We t h i n k 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 s l e a r n what i t i s l i k e to 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 you. We can t a l k about d i f f e r e n t t h i n g s t h a t you know about because you are a d i a b e t i c . I have some p i c t u r e s t h a t I'd l i k e you to see and t a l k about. There are paper and pens i f you'd l i k e to w r i t e or draw your i d e a s . I f you don't want to t a l k or want to stop a t any ti m e , i t i s up to you. I w i l l answer any q u e s t i o n s you or your f a m i l y might have, a f t e r we f i n i s h t a l k i n g . I t i s OK to s t a r t ? What i s your b i r t h d a t e ? How o l d were you when you became d i a b e t i c ? PICTURE: NARRATIVE AND QUESTION Boy, man and pregnant woman w i t h d i a b e t e s A l l these people have d i a b e t e s . Why d i d you get d i a b e t e s ? G i r l i n h o s p i t a l bed T h i s g i r l j u s t l e a r n e d she has d i a b e t e s . You a r e i n the h o s p i t a l and s t a r t t a l k i n g t o her. She as k s , "What i s i t l i k e ? You say.... 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 people s a i d t o you about d i a b e t e s ? What problems do you have because you have d i a b e t e s ? 1 0 8 PICTURE: Boy s m i l i n g G i r l f r o w n i n g Boy c r y i n g Woman l e a n i n g over boy w o r k i n g a t desk Boy g i v i n g i n j e c t i o n to d o l l / G i r l g i v i n g i n j e c t i o n i n her l e g Bloo d t e s t i n g equipment P u t t i n g t e s t s t r i p i n bloo d g l u c o s e monitor Box o f ketone t e s t s t r i p s Woman t a l k i n g t o a young g i r l Boy e a t i n g sandwich C h i l d r e n p l a y i n g p a r t y game C h i l d r e n c l i m b i n g t r e e G i r l p l a y i n g t e n n i s 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 Fa m i l y l o o k i n g a t book t o g e t h e r NARRATIVE: When would a d i a b e t i c f e e l l i k e t h i s ? L i k e t h i s ? L i k e t h i s ? L i k e t h i s ? How does i n s u l i n work? Why do you t e s t your blood? B e f o r e you t e s t your b l o o d , can you t e l l what you are g o i n g t o be? What i s i t l i k e to have low b l o o d sugar? What i s i t l i k e to have h i g h b l o o d sugar? Why do you t e s t your u r i n e ? What i s t h i s mother s a y i n g when her daughter's b l o o d t e s t i s hi g h ? What i s the d i a b e t i c way of e a t i n g l i k e ? What do you eat a t b i r t h d a y p a r t i e s ? What r u l e s t o you have about s p o r t s ? What do you wonder about d i a b e t e s ? What do people need t o l e a r n about d i a b e t e s ? Could you draw a p i c t u r e of what d i a b e t e s means to you? 109 APPENDIX S I X BIOMEDICAL MODEL OF DIABETES 1. E t i o l o g y THEORY: The cause i s not known, but f a c t o r s c o n t r i b u t i n g t o i t s development a re 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 i n d i v i d u a l s a t r i s k o f d e v e l o p i n g d i a b e t e s . Awareness o f the symptoms o f h y p e r g l y c e m i a may l e a d t o e a r l y d e t e c t i o n and d i a g n o s i s . 2. Course of S i c k n e s s / S e v e r i t y and Type of S i c k Role THEORY: Normally the pancreas r e l e a s e s i n s u l i n i n t o the blo o d s t r e a m when the b l o o d g l u c o s e r i s e s a f t e r e a t i n g . D i a b e t e s i s a d i s o r d e r i n which the body cannot r e g u l a t e the use of g l u c o s e because of a sh o r t a g e of the r e g u l a t i n g hormone i n s u l i n . 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 , w i t h a l i a b i l i t y t o d i a b e t i c k e t o a c i d o s i s . 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 of the body, g l u c o s e c o l l e c t s i n the bl o o d s u p p l y , 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 as the body t r i e s t o e l i m i n a t e excess sugar; water i s drawn from the t i s s u e s ; 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 the body t r i e s t o r e p l a c e these l o s s e s ; F a t i g u e , weakness and weight l o s s o ccur because the body i s unable to use or s t o r e g l u c o s e ; and A p p e t i t e i n c r e a s e s i n an attempt to p r o v i d e the body w i t h more 1 1 0 food f o r energy. S t r e s s i n c r e a s e s b l o o d g l u c o s e . The e m o t i o n a l impact of d i a b e t e s on the 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 can be: g u i l t or anger about become i l l ; f e a r and worry about death or c r i p p l i n g c o m p l i c a t i o n s such 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 about embarassing 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 caused by hypoglycemic e p i s o d e s ; 24 hour a day s t r u g g l e to m a i n t a i n normal b l o o d g l u c o s e i n s p i t e of an abnormal m e t a b o l i c s t a t e combined w i t h the u s u a l s t r e s s e s c r e a t e d by the demands o f l i v i n g . 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 t o cope s u c c e s s f u l l y w i t h f e e l i n g s . PRINCIPLES : Prol o n g e d u n c o n t r o l l e d d i a b e t e s ( h y p e r g l y c e m i a ) may l e a d t o k e t o a c i d o s i s . Treatment w i t h i n s u l i n i s mandatory. Symptoms of d i a b e t e s ( h i g h b l o o d g l u c o s e ) can be c o n t r o l l e d . I t i s i m p e r a t i v e to base a d v i c e on r e a l i s t i c optimism and t o convey s e r i o u s n e s s of 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 c o u n t e r p r o d u c t i v e . 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 i n d i v i d u a l s t o m a i n t a i n d i a b e t e s c o n t r o l . KEY 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 h i g h b l o o d g l u c o s e l e v e l s . a) S h o r t term: k e t o a c i d o s i s . b) Long term: t r i o p a t h y o f the eyes, k i d n e y s and nerves due to a t h i c k e n i n g and n a r r o w i n g o f bl 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 the a b i l i t y t o p r o v i d e oxygen and n u t r i e n t s , thought to be the r e s u l t of sugar or breakdown p r o d u c t s . K e t o a c i d o s i s : 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 of k e t o n e s . A c o m p l i c a t i o n of d i a b e t e s 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 odor of the 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 , weight l o s s and, i f u n t r e a t e d , coma. Ketone: breakdown p r o d u c t s t h a t occur when f a t i s used i n s t e a d 111 of g l u c o s e as f u e l i n muscles. E x c e s s i v e p r o d u c t i o n of these b o d i e s 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 of ketones i s an i n d i c a t o r o f impending k e t o a c i d o s i s . K e t o s i s : an abnormal 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 po 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 the b r e a t h . 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 D i a b e t e s BLOOD (GLUCOSE) TESTING THEORY: I n c i d e n c e and s e v e r i t y o f lo n g - t e r m c o m p l i c a t i o n s can be reduced 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 b l o o d g l u c o s e d e t e r m i n a t i o n s a re the b a s i s f o r m o n i t o r i n g day-to-day v a r i a t i o n s i n management and making changes i n i n s u l i n t h e r a p y . Assessment of 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 of bloo 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 time of day and t r e a t m e n t s t a t u s of the i n d i v i d u a l . Assessment 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 of bloo 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 time of day and t r e a t m e n t s t a t u s o f the i n d i v i d u a l . I n d i a b e t i c c h i l d r e n , b l o o d g l u c o s e l e v e l s a f t e r meals a r e almost always out of the normal range. PRINCIPLES: Blo o d g l u c o s e l e v e l s between 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 of the treatment e f f e c t . Test r e s u l t s must be r e c o r d e d and used. 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 blood g l u c o s e l e v e l s , u s i n g m e t i c u l o u s t e c h n i q u e to o b t a i n c l i n i c a l l y u s e f u l r e s u l t s . 1 CONCEPTS : Home B l o o d Glucose M o n i t o r i n g : t echn ique that measures b lood 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 of l i g h t r e f l e c t a n c e meter . Haemoglobin A1C THEORY: Measurement of the p r o p o r t i o n of g l y c o s y l a t e d haemoglobin i n the b lood i s an i n d i c a t o r o f mean blood g lucose l e v e l s f o r a p e r i o d of s e v e r a l weeks p r e c e d i n g the 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 over 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 adjustments i n G l y c o s y l a t e d hemoglobin: g lucose f r a c t i o n bound to c i r c u l a t i n g hemoglobin i n an almost 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 average b lood g lucose over the past few weeks s i n c e red b lood c e l l s l i v e for approx imate ly 120 days . Blood g lucose l e v e l s be fore meals and bedt ime: I d e a l : A c c e p t a b l e : U n d e s i r a b l e : U n a c c e p t a b l e : Too Low: 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 to 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 the d i a b e t e s regimen i s not b e i n g e f f e c t i v e or adhered t o . CONCEPT: G l y c o s y l a t e d haemoglobin: a l a b o r a t o r y t e s t tha t p r o v i d e s an i n d i c a t o r o f m e t a b o l i c c o n t r o l . 113 DRIME (KETONE) TESTING THEORY: K e t o a c i d o s i s i s caused by an ina d e q u a t e supply o f i n s u l i n which p r e v e n t s the body from u s i n g g l u c o s e f o r energy. The body burns f a t i n an u n c o n t r o l l e d manner which r e s u l t s i n a b u i l d u p of "ketones n. PRINCIPLE: Glucose u s u a l l y appears i n the u r i n e when the bl 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 (180 mg/100 m l ) . Test u r i n e f o r ketones whenever b l o o d g l u c o s e l e v e l i s e l e v a t e d (over 300 mg/dL) and/or i f not f e e l i n g w e l l . 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 between meals. K e t o a c i d o s i s : e x c e s s i v e l e v e l o f a c i d i n the b l o o d accompanied by an i n c r e a s e of ketones due to a l a c k o f i n s u l i n . Ketone: substance produced i n the body through a normal change f a t s undergo i n the l i v e r . Ketones a re used as f u e l i n muscles. E x c e s s i v e p r o d u c t i o n of these b o d i e s 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 . 4. Onset of Symptoms LOW BLOOD GLUCOSE THEORY: Hypoglycemia ( i n s u l i n r e a c t i o n or low bl o o d sugar) o c c u r s when t h e r e i s too much i n s u l i n or too l i t t l e sugar i n the b l o o d . Symptoms develop r a p i d l y , w i t h i n 15 minutes to one hour: 1) D u l l n e s s , headache, i r r i t a b i l i t y , c r y i n g 2) S h a k i n g , s w e a t i n g , l i g h t h e a d e d n e s s 114 3) Hunger, change i n mood or behav ior 4) Numbness o f l i p s or tongue, pa le s k i n , weakness, moist s k i n I f not t r e a t e d t h i s may progres s t o : 5) D i z z i n e s s 6) Loss o f c o o r d i n a t i o n , s l u r r e d speech 7) C o n f u s i o n , u n c o n s c i o u s n e s s . Opt imal c o n t r o l may r e s u l t i n symptoms of hypoglycemia from time to t i m e . Ep i sodes r e l a t e d to r e c o g n i z a b l e events such as i n c r e a s e d a c t i v i t y and decreased food i n t a k e i n d i c a t e symptomatic treatment o n l y . Hypoglycemia that i s s e v e r e , r e p e t i t i v e or wi thout obv ious cause demands the p h y s i c i a n ' s assessment and u s u a l l y a change i n d i e t or i n s u l i n dosage. Hypoglycemia that i s s e v e r e , r e p e t i t i v e or wi thout obv ious cause demands the p h y s i c i a n ' s assessment and u s u a l l y a change i n d i e t or i n s u l i n dosage. The set p o i n t of 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 i s h i g h e r than normal c a u s i n g them to e x p e r i e n c e symptoms of hypoglycemia when b lood g lucose i s normal or even when above normal . PRINCIPLE: D i a b e t i c s shou ld c a r r y q u i c k a c t i n g sugar at a l l t i m e s . Wearing i d e n t i f i c a t i o n and i n s t r u c t i o n s can a s s i s t i n symptomatic t r e a t m e n t . CONCEPTS: Normal b lood g l u c o s e : 80-120 mg/100ml ( 4 . 4 - 6 . 6 mmol/L) 80-180 mg/100ml (4 .4 -10 mmol/L) for c h i l d r e n Hypog lycemia: M i l d : 50-79 mg/dL Severe : 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 nondie t carbonated beverage; 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 . sugar , honey or j e l l y ; or g lucose c o n c e n t r a t e ( D e x t r o s o l t a b l e t s , G lutose tube , Monoje l packets ) 115 HIGH BLOOD SDGAH THEORY: Hyperg l y c e m i a i n d i c a t e s c o n t r o l i s poor. S i g n s of h i g h b l o o d sugar a r e : e x c e s s i v e u r i n a t i o n , t h i r s t , weakness, 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 . Frequent or prol 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 n e r ves, 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 response causes i n c r e a s e s i n plasma e p i n e p h r i n e , n o r e p i n e p h r i n e and C o r t i s o l . The r e s u l t may be i n o r e a s e d b l o o d sugars a t the same food i n t a k e and i n s u l i n dosages. 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 b l o o d g l u c o s e l e v e l s due to the a c t i o n of a d r e n a l i n . 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 dec r e a s e h i s or her 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 . CONCEPTS: Hy p e r g l y c e m i a : b l o o d g l u c o s e l e v e l s above normal. 5. Treatment THEORY: The major g o a l o f the care p l a n i s to a c h i e v e as normal a 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 replacement must be bal a n c e d a g a i n s t food i n t a k e and amount of energy expended. Management i n c l u d e s r e c o g n i t i o n and tre a t m e n t of c o m p l i c a t i o n s . 116 The a b i l i t y o f the f a m i l y t o i n c o r p o r a t e the care p l a n i n t o t h e i r l i f e s t y l e depends on t h e i r adjustment to the 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 . The most i m p o r t a n t f a c t o r i n compliance 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 of the h e a l t h care team. F e e l i n g w e l l and optimum growth and development a r e b e s t a c h i e v e d through good c o n t r o l . PRINCIPLE: S t r a t e g i e s f o r management of 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 accommodating 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: 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 between meals. G l u c o s e : sugar i n the form which c a r b o h y d r a t e i s a s s i m i l a t e d by a n i m a l s . I n s u l i n : n a t u r a l l y o c c u r r i n g hormone r e l e a s e d by the pancreas. I N g U M N R E P L A C E M E N T 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 and d u r a t i o n at a g i v e n dose. 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 taken 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 blo o d g l u c o s e l e v e l s may be normal 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 the day. For a c c e p t a b l e c o n t r o l o f b l o o d g l u c o s e a m i x t u r e of 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 meals i s r e q u i r e d . I n s u l i n i s absorbed more q u i c k l y from an e x e r c i s e d muscle. T i s s u e damage can 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 dose may be inadequate d u r i n g s t r e s s , growth or i l l n e s s . 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 of i n s u l i n . The s i t u a t i o n s which c a l l them f o r t h a r e : Trauma, i n f e c t i o n , i l l n e s s , f e v e r , exposure 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 ; ca techo lamines 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 produced 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 should be i n j e c t e d i n t o areas tha t have a l a y e r of f a t under the s k i n and are f r e e of l a r g e b lood 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 shou ld be used, changing the s i t e f o r each 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 approx imate ly 2.5 cm. a p a r t . Avo id i n j e c t i n g i n s u l i n i n t o an area over a muscle to be e x e r c i s e d . CONCEPTS : L i p o d y s t r o p h y : a trophy of subcutaneous f a t pads; a s i d e e f f e c t more l i k e l y wi th poor r o t a t i o n o f s i t e s . S t r e s s : any e m o t i o n a l , p h y s i c a l , s o c i a l , economic or o t h e r f a c t o r tha t r e q u i r e s a response or change. Somogyi e f f e c t : f l u c t u a t i o n s of b lood g lucose betwen h igh and low w i t h i n one to two hours 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 causes the body to 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 g lucose a g a i n s t h y p o g l y c e m i a . T h i s o f t e n r e s u l t s i n n igh t time r e a c t i o n s . Dawn Phenomenon: b lood g lucose l e v e l s h i g h e r than normal i n the e a r l y morning; a r e s u l t of the Somogyi e f f e c t . WAY OF EATING THEORY: The body uses g lucose from food f o r energy . 118 B e c a u s e i n d i v i d u a l s c a n n o t s e c r e t e e n d o g e n o u s i n s u l i n i n r e s p o n s e t o n u t r i e n t s , f o o d i n t a k e must 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 i n s u l i n . F a i l u r e t o do so 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 o r h y p e r g l y c e m i a . E a t i n g must be p l a n n e d a c c o r d i n g t o t h e amount o f i n s u l i n a v a i l a b l e i n t h e b o d y . W e l l - b a l a n c e d r e g u l a r m e a l s h e l p c o n t r o l t h e amount o f g l u c o s e i n t h e b l o o d . 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 b e c a u s e t h e y r a p i d l y r e l e a s e s u g a r i n t o t h e b l o o d and r e q u i r e l a r g e a m o u n t s o f i n s u l i n t o r e s t o r e b a l a n c e . The p h y s i c i a n and d i e t i t i a n p r e s c r i b e a m e a l p l a n b a s e d on i n d i v i d u a l n e e d s . S i m p l e c a r b o h y d r a t e s a r e r e a d i l y a b s o r b e d and c a u s e h y p e r g l y c e m i a . P R I N C I P L E S : 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 f o l l o w a m e a l p l a n and n e e d 3 m e a l s and 3 b e t w e e n - m e a l s n a c k s . The k i n d and amount o f c a r b o h y d r a t e i n a m e a l o r s n a c k s h o u l d be k e p t c o n s i s t e n t f r o m day t o d a y . F o o d s h i g h i n s u g a r c o n t e n t t o be a v o i d e d i n c l u d e : c a n d y , h o n e y , j e l l i e s , s y r u p , p i e and c a k e . CONCEPTS : G l u c o s e : 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 the f o o d we e a t . The body u s e s g l u c o s e f o r e n e r g y S i m p l e c a r b o h y d r a t e s : mono and d i s a c c h a r i d e s ( s u g a r s ) C o m p l e x c a r b o h y d r a t e s : p o l y s a c c h a r i d e s ( s t a r c h e s ) E X E R C I S E THEORY: 119 E x e r c i s e most l i k e l y a l t e r s the r e c e p t i v i t y of i n s u l i n r e c e p t o r s as w e l l as t h e i r c o n c e n t r a t i o n . E x e r c i s e i n c r e a s e s glucose u t i l i z a t i o n and u s u a l l y lowers blood sugar i n untreated d i a b e t i c s . Hypoglycemia can occur during, immediately or up to 18 hours f o l l o w i n g p h y s i c a l a c t i v i t y . During the excitement and i n t e n s i t y of the game, e a r l y symptoms can be missed. E x c e s s i v e e x e r c i s e without adequate food may lower blood sugar too much, r e s u l t i n g i n hypoglycemia. PRINCIPLES: A l l i n d i v i d u a l s r e q u i r e a r e g u l a r schedule of a c t i v i t y . A f r i e n d , coach or team-mate should know the symptoms and treatment of hypoglycemia. E x t r a food before, d u r i n g and/or a f t e r a c t i v i t y i s recommended. For strenuous a c t i v i t y : Eat 1-2 F r u i t / V e g e t a b l e s Choices (10-20 grams carbohydrate) f o r each h a l f hour of hockey, running, swimming or t e n n i s . For moderate a c t i v i t y : Eat 1 F r u i t / V e g e t a b l e s Choice (10 grams carbohydrate) f o r each h a l f hour of a c t i v i t y or 1 Starchy Choice (15 grams carbohydrate) f o r each hour of b r i s k walking or c y c l i n g . For l i g h t a c t i v i t y : Eat 1 Starchy Choice f o r the whole e x e r c i s e p e r i o d — a longer walk or bowling. Reducing the i n s u l i n may be a u s e f u l a l t e r n a t i v e when a c t i v i t y i s planned ahead. 1 20 APPENDIX SEVEN EXEMPLARY TRANSCRIPT FROM AD INTERVIEW S u b j e c t : Vanessa L. 22 January 1986 12 y e a r s 11 months S=Subject I = I n t e r v i e w e r I : We're t r y i n g t o f i n d ways to h e l p people l e a r n more about d i a b e t e s . I'd l i k e t o t a l k to you and l e a r n the s p e c i a l t h i n g s t h a t you know about because you are a d i a b e t i c . T h i s i s n ' t a t e s t . I have some p i c t u r e s t h a t I'd l i k e you to see and t a l k about. There are paper and pens i f you'd l i k e to w r i t e or draw your i d e a s . I f you don't want to t a l k or want to stop a t any ti m e , i t i s up to you. I ' l l t r y t o answer any q u e s t i o n s you might have, a f t e r we f i n i s h t a l k i n g . I s i t O.K. to s t a r t ( t h e tape r e c o r d e r ) ? S: Yes I : What date was your b i r t h d a y ? S: F e b r u a r y 19, 1973 I : When d i d you become d i a b e t i c ? S: March 10, 1983 I : I'd l i k e you to t e l l me your s t o r y about d i a b e t e s . What's i t l i k e to be a d i a b e t i c ? S: A l l t h a t ' s d i f f e r e n t i s I take s h o t s and eat d i f f e r e n t f o o d — t h a t ' s a l l . I : When you hear the word ' d i a b e t e s ' i s t h e r e an image you get? S: No. I get embarassed sometimes. At s c h o o l , t h e r e ' s another d i a b e t i c i n my c l a s s and we have to eat at 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 can eat and you c a n ' t " and we get embarassed. I : Many d i f f e r e n t people have d i a b e t e s . T h i s 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 has 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 day. ( L e t ' s say) 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 her because you have d i a b e t e s , t o o . She as k s , "What i s i t l i k e ? " You say, " D i a b e t e s i s . . " S: I'd t e l l them i t s not t h a t h a r d , r e a l l y . You j u s t have to get used to i t and a f t e r you do get used to i t , i t s s o r t of l i k e 1 2 1 a r o u t i n e . S ometimes i n t h e m o r n i n g y o u 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 u s e d t o i t . You j u s t g e t u s e d t o i t . A l l y o u r f r i e n d s — t h e y d o n ' t r e a l l y s a y y o u ' r e d i f f e r e n t o r n o t h i n g — y o u ' r e w i t h them. Nobody r e a l l y bugs y o u a b o u t i t o r n o t h i n g — i t s n o t h i n g t o be a f r a i d o f . I : T e l l me how she f e e l s [ p i c t u r e o f g i r l i n h o s p i t a l bed] S: P r o b a b l y s c a r e d I : What w o u l d she a s k y o u ? S: Y e h ! I f she was a f r a i d o f n e e d l e s l i k e I was a t f i r s t , s h e ' d a s k i f i t h u r t s and i f she has t o g i v e i t h e r s e l f . I : Do you remember what you t h o u g h t b e f o r e t h e d o c t o r t o l d y o u ? S: My mom knew--she 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. They t o o k my b l o o d and t h e n e x t day my dad came t o s c h o o l and t o o k me t o t h e h o s p i t a l — I d i d n ' t know what was g o i n g on. We went t o t h e h o s p i t a l - - I s t i l l d i d n ' t know what was g o i n g 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 n e v e r been i n t h e h o s p i t a l b e f o r e . I : C o u l d y o u i m a g i n e why t h e y were d o i n g t h o s e t h i n g s ? S: My mom on t h e way t h e r e — i t t o o k us a b o u t 2 h o u r s t o g e t 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 me a l l a b o u t i t . I : A n y t h i n g e l s e ? S: Not r e a l l y . 'Cus I was i n t h e h o s p i t a l w i t h some o t h e r g i r l s , t o o . T h e y ' d o n l y been i n t h e r e one d a y , t o o . I : Do you remember l e a r n i n g t o g i v e a n e e d l e ? 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 me a l i t t l e b i t and I was a f r a i d . A f t e r t h a t I j u s t d i d i t e v e r y d a y . I : How does i t w o r k ? S: I t f l o w s i n t o you s y s t e m and 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 were t a l k i n g a b o u t t h i s was 2 y e a r s ago. I t g o es i n t o y o u r p a n c r e a s and t h e r e ' s no B c e l l s t h e r e . i t w o r k s 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 s y s t e m ? S: T h a t ' s t h e one I d o n ' t k n o w — I c a n ' t remember, but i t s n o t t h e b l o o d s y s t e m . 1 22 I : Where do you l i k e t o g i v e your i n s u l i n ? S: I g i v e i t i n my stomach; i n my r e a r and i n my l e g s a t n i g h t . I : Can you t e l l me the re a s o n you do blo o d t e s t s ? S: To see how much sugar I have i n my b l o o d , to see 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 see i f I'm too h i g h - - t h e sugar i n my b l o o d , and i f I am I can b r i n g i t down. I : B e f o r e you t e s t , can you t e l l what your b l o o d sugar i s g o i n g to be? [ P i c t u r e of bl o o d t e s t i n g equipment] S: I can t e l l when I nm low, but the r e s t of the time I don't know. Sometimes 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 can, but t h e n i t s j u s t a guess. I : No symptoms? S: I can f e e l when I'm about under 1 2 0 — b u t the r e s t of the ti m e , I haven't a c l u e . I : What's the lo w e s t you've ever been? S: 31 I : I know what some people l o o k and a c t l i k e when they are h a v i n g a r e a c t i o n . Some people say i t f e e l s l i k e h a v i n g an earthquake i n s i d e your body. T e l l me what i t s l i k e f o r you when you a r e low: " I t s as i f " S: I get a l l shaky, my head s o r t of f e e l s l i k e I got a h e a d a c h e — n o t r e a l l y , but i t h u r t s a b i t . When I t r y to walk, my 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 don't have enough suga r i n my b l o o d and I s h o u l d eat something, I : What do you do about i t ? S: F i r s t of a l l , my mom makes me do my blood t o make sure I'm not h i g h . And then a t s c h o o l , I have D e x t r o s o l , cheese 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 of j u i c e an eat 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 you blo o d sugar i s g o i n g up? S: I t take s about f i v e minutes and the s h a k i n g goes down and as my f r i e n d s would say, I get a l l hyper a g a i n . I : A n y t h i n g e l s e ? 123 S: J u s t the s h a k i n g and a l l the a c h i n g goes away. I j u s t f e e l b e t t e r . My head and my knees ache sometimes, not ache, i t j u s t f e e l s l i k e t h a t . I : T e l l me what i t s l i k e when you bl o o d sugar i s h i g h . " I t s as S: Then I g e t r e a l shaky, t o o , but I f e e l r e a l hot and sometimes I f e e l d i z z y . That's a l l r e a l l y , I've v e r y r a r e l y had t h a t so I don't know. I : When would you blood sugar be the 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 about 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 to g i v e more i n s u l i n , I t h i n k . I : What do you do when your b l o o d sugar i s h i g h ? Any r u l e s ? S: Yes, i f I remember i t s 5-10-15. No, i t s not t h a t one. I t h i n k I'm supposed to add one or two of Tor o n t o . I : Who d e c i d e s ? S: My mom. She used to be a nurse. I f i t was my d e c i s i o n , I wouldn't know what to do. I : When do you t e s t ? S: B e f o r e I go to s c h o o l , b e f o r e supper, at ( e v e n i n g ) snacktime and l u n c h t i m e when I nm home. I do i t every 2 days, s k i p a day, every 2 days. I : Are your t e s t s d i f f e r e n t on weekends? S: Not t h a t much d i f f e r e n c e . I do l o t s more e x e r c i s e at s c h o o l than a t home. I : Do you change your i n s u l i n ? S: No I ; What are your b l o o d t e s t s supposed to be? S: I u s u a l l y l i k e i t to be between 80 and 180. But I l i k e t o be normal, 120 to 80. But i f i t s o v e r , i t doesn't m a t t e r so. My b l o o d u s u a l l y does s t a y under 200, but when i t does (go over) I j u s t g i v e more i n s u l i n . I : Why over 200? S: Maybe I a t e something t h a t was too sweet. My mom c o u l d have made some c o o k i e s and I d i d n ' t know what k i n d they were and I 124 j u s t grabbed them. Or I d i d n ' t do enough e x e r c i s e t h a t day. I : Have you ever had a hi g h t h a t you can't e x p l a i n ? S: I've had t h a t a few times and I k i n d of f i g u r e d out I maybe at e too much or something or I was j u s t l a z i n g around the house. I : Do you t a l k t o anyone about your bl o o d t e s t s ? S: Yeh I : Who? S: My mom u s u a l l y l o o k s a t them. I ; Do you get feedback a t the c l i n i c ? S: Not r e a l l y , they j u s t phone back and t e l l you what the bl o o d i s . When you've a l r e a d y gone t h e r e and they've taken the blo o d i n the tu b e s . I t h i n k some o t h e r k i n d o f check. I f o r g e t what i t s c a l l e d . I : Hemoglobin A1C? S: Yes, t h a t ' s what i t i s . I t h i n k I'm always over or something. I : Can you t e l l me what you t h i n k t h i s mother i s s a y i n g t o her daughter, because her blood t e s t s were hig h ? S: No, I c o u l d n ' t I : I s t h e r e a n y t h i n g you do i f your sugar i s over 300? S: I t e s t f o r k e t o n e s . I don't t h i n k I've ever had those 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 or go o u t s i d e f o r a w h i l e , h o p i n g the bl o o d w i l l go down. I u s u a l l y run around the b l o c k a co u p l e of times or go b i k e r i d i n g or 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 says sugar i s o v e r f l o w i n g i n t o your b l a d d e r system--u r i n e — I t h i n k t h a t ' s the way i t went. I : What would you say about the d i a b e t i c way of e a t i n g ? S: Ask my dad t h a t - - h e s a y s I e a t too 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 eat s l o w l y and my dad l o o k s a t me because 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 of the f a m i l y i s s i t t i n g around the t a b l e e a t i n g , i t s a l s o because I don't get a much as they do. I : At p a r t i e s or r e s t a u r a n t s i s i t d i f f i c u l t b e i n g a d i a b e t i c ? Not r e a l l y , i f the o r d e r ' s too 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 or she j u s t g i v e s me some of h e r s . I : What's your best s p o r t or game? S: At s c h o o l , at r e c e s s , we have to run a m i l e everyday; l u n c h we p l a y b a s e b a l l , ( s t r e e t ) hockey, and s o c c e r . I l i k e t o s k a t e 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 you t e s t b e f o r e and a f t e r s p o r t s ? S: Yes. Not when I'm t h e r e , but when I come home, u s u a l l y I'm a l o t l o w e r . Grade 7 has c o m p e t i t i o n . I got p i c k e d f o r a hockey tournament so I'm g o i n g i n t h a t f o r 6 hours. Soccer 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 never t r u s t s h e r s e l f t o run 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 went i n c r o s s c o u n t r y and she d i d n ' t a l l the o t h e r k i d s asked. Kim was always a f r a i d of g e t t i n g low. And I t h i n k i t got to her head t h a t i f she'd g o i n g t o get low she won't do i t , but now she does e v e r y t h i n g because I came. They c o u l d see t h a t we're 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 to b i r t h d a y p a r t i e s , she got more (f o o d ) than I d i d so they thought something i s wrong, l i k e Kim's e a t i n g too much, r i g h t ? They c o u l d always t e l l the d i f f e r e n c e . They s a i d i f I hadn't t o l d them they wouldn't know I was d i a b e t i c because I was always i n t e r e s t e d i n s p o r t s and I always d i d them and r a n the c r o s s c o u n t r y and t r a c k and f i e l d . About a r u l e f o r s p o r t s , I'd say 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 out and do l i k e you d i d b e f o r e , I u s u a l l y eat my normal snack and ta k e something a l o n g j u s t i n case. When I go swimming or s k a t i n g , i t s j u s t f o o l i n g around and i t s r e a l l y n o t h i n g . When I go to c o m p e t i t i o n , I b r i n g supper 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 , cheese and c r a c k e r s . My mom sometimes g i v e s me f r u i t r o l l - u p . I take maybe she'd g i v e me some candy j u s t i n case. 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 about d i a b e t e s or q u e s t i o n s they've asked? S: They d i d n ' t r e a l l y ask 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 had to b r i n g my l i t t l e computer a l o n g and they j u s t asked me how i t worked and i f i t h u r t when I took the t h i n g . Then one of them was brave enough to t r y i t and now they a l l know i t doesn't h u r t t h a t much. That's about the o n l y q u e s t i o n they ever asked me. I : Can you t h i n k of times i t s d i f f i c u l t b e i n g a d i a b e t i c ? S: When I f i r s t found out my f r i e n d s d i d n ' t understand and they a c t e d w i e r d around me. They thought maybe i t would be ca t c h y or something so they s t a y e d away. Then I guess my t e a c h e r got mad and s t r a i g h t e n e d them out. That was about the o n l y t i m e . Sometimes when I go to b i r t h d a y p a r t i e s and t h e r e ' s such good f o o d around and I know I'm not a l l o w e d t o have i t . I t s s o r t of 126 hard then. I : Do any of your f r i e n d s have d i a b e t e s ? S: J u s t the ones at camp. I : Do your o t h e r f r i e n d s w i t h d i a b e t e s t h i n k the same way t h a t you do? S: There was a boy t h a t was i n our s c h o o l who had d i a b e t e s t o o , but he r e a l l y d i d n ' t t a k e agood c a r e of i t . He a t e too much jun k f o o d — h e wasn't a l l o w e d t o , but he d i d anyways--potato c h i p s , normal gum, c h o c o l a t e b a r s . Somebody says t h a t around the age I am now i t s hard not to eat t h a t k i n d of f o o d . So i f you eat the r i g h t foods 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 they s a i d i f I watched 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 don'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 the age. I : Are you ever tempted? S: I know I'm not supposed t o , so I push i t a s i d e and l e a v e the room. I : Can you t e l l me when a d i a b e t i c would f e e l l i k e t h i s ? [ P i c t u r e of boy s m i l i n g ] S: He's somewhere w i t h h i s f r i e n d s , h a v i n g a p i c n i c o r s o m e t h 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 f r o w n i n g ] S: What k i n d of l o o k i s t h a t ? I : What do you t h i n k ? S: Her f r i e n d s pushed her a s i d e and when she's d o i n g something or e a i n g what she's not supposed t o . She knows t h a t i t s wrong and she'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 about i t . [ P i c t u r e of boy c r y i n g ] S: He j u s t found out about i t . [ P i c t u r e of woman l e a n i n g over boy a t desk] S: I s t h a t a t e a c h e r or h i s mom? They're angry w i t h him and s a y i n g he's u s e l e s s or something. He l o o k s mad, c o n f u s e d . I : Are t h e r e t h i n g s you wonder about because you have d i a b e t e s ? S: I wonder i f t h e y ' r e ever g o i n g t o f i n d a c u r e . 127 I : Can you t e l l me any s t o r i e s about o t h e r d i a b e t i c s t h a t h e l p e d you l e a r n about d i a b e t e s ? S: WHen I went to camp the f i r s t time I d i d n ' t l i k e g i v i n g n e e d l e s . And I saw a l l those 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 of encouraged me and I had t o do my own now, because 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 people have asked you. S: was hard to e x p l a i n or they ask. People l o o k a t me when they hear I have to take 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 they l e a r n e d the way a d i a b e t i c has to l i v e , maybe they'd understand a l o t more. I : T h i s man has had d i a b e t e s f o r 50 y e a r s . Can you t e l l me what has h e l p e d him l i v e t h i s l o n g ? S: He's p r o b a b l y one of those people t h a t f o l l o w s h i s d i e t and goes t o see t h e d o c t o r a l l the t i m e . He p r o b a b l y i s one of t h o s e people who e x e r c i s e a l o t . That p r o b a b l y kept him h e a l t h y . I : What would a cure 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 put them i n the d i a b e t i c s . I know i t sounds funny. I : What would t h a t mean f o r you? S: I don't know. No more s h o t s . No more bl o o d t e s t s . No more d i e t . I'd have the urge to eat more f o o d . I : You know the t h i n g s you have to do e v e r y day because you have d i a b e t e s . What do o t h e r people need to know? S: Where the i n s u l i n comes from. People ask me and i t s s o r t of 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 person needs i t . How they become a d i a b e t i c i f they know somebody. I've t o l d them i t s not 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 o f 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 got i t , everybody thought 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 s i s t e r c o u l d understand what I h a v e — i t might h e l p a b i t . I : Do your p a r e n t s t a l k t o them? S: My mom and dad have, I don't t h i n k t h e y ' r e o l d enough to f i g h t over i t . They're not t h a t o l d . Teachers. Most of them know a l l about i t . I t h i n k they do, they've had q u i t e a few d i a b e t i c s i n the s c h o o l and they've 128 l e a r n e d from e x p e r i e n c e . I : What would you l i k e to do a f t e r you f i n i s h s c h o o l ? S: I'd l i k e to be a t e a c h e r . My dad wants me to 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 nurse but then I t h i n k o f a l l the g r o s s s t u f f and gory t h i n g s I have to do and I d e c i d e not t o . I : Are t h e r e any t h i n g s we haven't t a l k e d about t h a t can h e l p us und e r s t a n d the meaning of d i a b e t e s ? S: What do you mean by t h a t ? I : Things people c o u l d l e a r n about d i a b e t e s . S: How t o r e a c t a t s c h o o l , l i k e when you're 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 your f r i e n d s . You s h o u l d t e l l your f r i e n d s how to cope w i t h i t . I don't t h i n k any o f my f r i e n d s know what to do. 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 , or you're low or something. Then I h o l d up my h a n d — i t s shaky. L i k e Kim, t e a r s r o l l i h n g down her f a c e because you're so l o w . You're r i g h t i n the middl e of a s u b j e c t and you don't r e e l l i k e g o i n g , "Can I go out of the 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 , then i t s g e t t i n g worser and worse. The person 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 and, " I t h i n k she's low". I had i t i n my desk l a s t y e a r . I t happened when we were at F rench. The t e a c h e r runs up and runs 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 don't know what's g o i n g on. Then everybody'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 ok?" I : Good. That's a l l . Thanks 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 mother as w e l l as s i s t e r and b r o t h e r were i n the l i v i n g room w h i l e we were i n the k i t c h e n s i t t i n g , a t the t a b l e . A f t e r the i n t e r v i e w we t a l k e d i n the l i v i n g room about my s t u d y . Vanessa mentioned t h a t when they go camping i t s j u s t l i k e b e i n g at home, except no t r a v e l l i n g . She thought her b r o t h e r and 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 f o o d s . 129 APPEHDIX EIGHT CHILDBEI'S DiAYIIGS OF DIABETES 1. What I n s u l i n Does Drawer: Dianne (\2 O v e r a l l I m p r e s s i o n : S p e c i f i o I n d i c a t o r : y e a r s ) r o t e l e a r n i n g o f i n s u l i n one key and one c e l l a o t i o n 2. Diabetes 130 S p e o i f i c i n d i c a t o r s ! 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 vein', panoreas and incomplete and enlarged abdomen without head or legs. 131 3. Diabetes Drawer: Tyson (11 years) Overall impression: concerned with i n s u l i n , testing and 'balancing 1, food not included i n balance. S p e c i f i c i n d i c a t o r s : glucose monitor, balance of i n s u l i n and exercise. Food omitted. 132 4. Diabetes Drawer: K r i s t a (10 years) Overall impression: concerned with testing and i n j e c t i o n s , r e a l i z i n g exercise i s part of the routine; not integrated 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 s e l f omitted. 133 5. Morning Routine Drawer: Vanessa (12 years) Overall impression: Aspeots that make l i k e d i f f e r e n t . S p e c i f i c i n d i c a t o r s : testing, i n j e c t i n g , breakfast and running to the bus stop. Dpper body omitted. 134 6. Me Drawer: Cathy (12 years) Overall Impression: Good s e l f image. S p e c i f i c Indicators: Doesn't dwell on medical aspects. 

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