UBC Theses and Dissertations

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UBC Theses and Dissertations

Effects of a nursing intervention utilizing personal decision-making on adherence to diet and fluid restrictions… McCormick, Janice Lyn 1977

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EFFECTS OF A NURSING INTERVENTION UTILIZING PERSONAL DECISION-MAKING ON ADHERENCE TO DIET AMD FLUID RESTRICTIONS BY HEMODIALYSIS PATIENTS by J a n i c e Lyn McCormick B.N., U n i v e r s i t y o f Manitoba, 1973 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING IN THE FACULTY OF GRADUATE STUDIES . t h e School o f N u r s i n g We a c c e p t t h i s t h e s i s as co n f o r m i n g t o the r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA May, 1977 s^c^ Janiice Lyn McCormick, 1977 In presenting th i s thes is in pa r t i a l fu l f i lment of the requirements for an advanced degree at the Univers i ty of B r i t i s h Columbia, I agree that the L ibrary sha l l make it f r ee l y ava i l ab le for reference and study. I fur ther agree that permission for extensive copying of th is thesis for scho lar ly purposes may be granted by the Head of my Department or by his representat ives. It is understood that copying or pub l i ca t ion of th is thes is fo r f inanc ia l gain sha l l not be allowed without my writ ten permission. Department of GRADUATE STIIHTFS The Univers i ty of B r i t i s h Columbia 2075 wesbrook Place Vancouver, Canada V6T 1W5 Date AUGUST. 1977 i i ABSTRACT An e x p e r i m e n t a l s t u d y was undertaken t o answer'the q u e s t i o n posed by the problem: "Does a n u r s i n g i n t e r v e n t i o n which u t i l i z e s a d e c i s i o n -making model t o a s s i s t p a t i e n t s i n e s t a b l i s h i n g p e r s o n a l g o a l s f o r adherence t o f l u i d and p o t a s s i u m r e s t r i c t i o n s s i g n i f i c a n t l y d e c r e a s e weight g a i n s between d i a l y s e s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s , compared w i t h the v a l u e s f o r t h e s e v a r i a b l e s i n a c o n t r o l group which does not have the i n t e r v e n t i o n ? " S i x t e e n c h r o n i c h e m o d i a l y s i s p a t i e n t s from one l a r g e t e a c h i n g h o s p i t a l were s e l e c t e d a c c o r d i n g t o p r e - e s t a b l i s h e d c r i t e r i a , and then randomly a s s i g n e d t o e i t h e r e x p e r i m e n t a l o r c o n t r o l c o n d i t i o n s . The E x p e r i m e n t a l group was exposed t o t h e n u r s i n g i n t e r v e n t i o n , which was the independent v a r i a b l e . The n u r s i n g i n t e r v e n t i o n c o n s i s t e d o f an i n i t i a l i n t e r v i e w , d u r i n g which t h e p a t i e n t s completed a B a l a n c e Sheet P r o c e d u r e , and e s t a b l i s h e d p e r s o n a l g o a l s f o r weight g a i n between d i a l y s e s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . T h e r e a f t e r , f o r a p e r i o d o f f i v e weeks, the p a t i e n t s i n the E x p e r i m e n t a l group completed a W e l l -Being R a t i n g S c a l e a t each d i a l y s i s and c h a r t e d t h e i r p r o g r e s s toward t h e i r g o a l s on a P r o g r e s s Sheet. The dependent v a r i a b l e s were between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . Data P e r t a i n i n g t o t h e dependent v a r i a b l e s were c o l l e c t e d on both E x p e r i m e n t a l and C o n t r o l p a t i e n t s i n a l l t h r e e phases o f the s t u d y : t h e s i x month P r e - I n t e r v e n t i o n Phase, the f i v e week I n t e r v e n t i o n Phase, and the t h r e e week Follow-Up Phase. The T h e o r e t i c a l Framework on which the s t u d y was based i s Jam's and Mann's C o n f l i c t T h e o ry (1968), and t h e i r B a l a n c e Sheet P r o c e d u r e , which was used t o f a c i l i t a t e p e r s o n a l d e c i s i o n - m a k i n g and goal s e t t i n g i i i by p a t i e n t s i n r e l a t i o n t o between d i a l y s e s weight g a i n s and p r e -d i a l y s i s serum p o t a s s i u m l e v e l s . The r e s u l t s i n d i c a t e d t h a t t h e E x p e r i m e n t a l group o b t a i n e d s i g n i f i c a n t l y lower p r e - d i a l y s i s serum p o t a s s i u m l e v e l s d u r i n g t h e I n t e r v e n t i o n Phase than the C o n t r o l group, but t h e r e were no s i g n i f i c a n t d i f f e r e n c e s between the two groups i n weight g a i n s between d i a l y s e s . The W e l l - B e i n g R a t i n g S c a l e s completed by t h e E x p e r i m e n t a l p a t i e n t s i n d i c a t e d t h a t w e l l - b e i n g tended t o i n c r e a s e s l i g h t l y o v e r t h e s t u d y p e r i o d , and was s i g n i f i c a n t l y r e l a t e d t o t h e achievement o f t h e g o a l s the p a t i e n t had e s t a b l i s h e d f o r w e i g h t g a i n s and p o t a s s i u m l e v e l s . A n e g a t i v e c o r r e l a t i o n was f o u n d between w e l l - b e i n g and weight g a i n . The i m p l i c a t i o n s o f t h e s e f i n d i n g s f o r the n u r s i n g c a r e o f h e m o d i a l y s i s p a t i e n t s a r e d i s c u s s e d , and recommendations f o r f u r t h e r r e s e a r c h a r e p r e s e n t e d . i v TABLE OF CONTENTS Page LIST OF TABLES v i i i C h a p t e r I INTRODUCTION 1 Purpose o f the Study 2 Problem Statement 2 Hypotheses 2 D e f i n i t i o n o f Terms 3 Assumptions 5 L i m i t a t i o n s 5 O u t l i n e o f the Study 6 S i g n i f i c a n c e t o N u r s i n g 6 E t h i c a l C o n s i d e r a t i o n s 8 Summary and F o l l o w i n g C h a p t e r s 9 II REVIEW OF THE PERTINENT LITERATURE 11 The Normal Kidney 11 Renal F a i l u r e 12 H e m o d i a l y s i s 14 P h y s i c a l Problems A s s o c i a t e d With C h r o n i c H e m o d i a l y s i s 15 D i e t and F l u i d R e s t r i c t i o n s i n C h r o n i c Renal F a i l u r e . . 16 M e a s u r i n g P a t i e n t Compliance t o D i e t a r y and F l u i d R e s t r i c t i o n s 18 RESEARCH ON COMPLIANCE TO MEDICAL REGIMENS 22 Demographic F e a t u r e s o f P a t i e n t s 25 F e a t u r e s o f the D i s e a s e 26 F e a t u r e s o f the T h e r a p e u t i c Regimen 26 F e a t u r e s o f the T h e r a p e u t i c Source 29 F e a t u r e s o f the P a t i e n t - T h e r a p i s t I n t e r a c t i o n . . . . 30 S o c i o b e h a v i o r a l F e a t u r e s o f P a t i e n t s 31 I n t e r v e n t i o n s t o Promote Compliance 34 E d u c a t i o n a l S t r a t e g i e s 35 v C h a p t e r Page B e h a v i o r a l S t r a t e g i e s 35 Combined S t r a t e g i e s 36 S t u d i e s o f Compliance i n H e m o d i a l y s i s P o p u l a t i o n s . . 37 P s y c h o l o g i c a l Problems A s s o c i a t e d With C h r o n i c H e m o d i a l y s i s ............ 40 Coping With Hemodialysis. 42 THEORETICAL FRAMEWORK D e c i s i o n - M a k i n g Model 48 Goal S e t t i n g 51 Summary . 52 II I METHODOLOGY 53 C l i n i c a l S e t t i n g 53 C r i t e r i a f o r Sample S e l e c t i o n 53 Research Design 54 D e s c r i p t i o n o f T o o l s Used 55 Data C o l l e c t i o n 59 Data A n a l y s i s 61 A d d i t i o n a l Research Q u e s t i o n s 61 S t a t i s t i c a l A n a l y s e s 62 Summary 63 IV RESULTS 64 The Sample 64 Responses t o the I n t e r v i e w 66 R e s u l t s o f the B a l a n c e Sheet P r o c e d u r e 70 Goal S e t t i n g 75 HYPOTHESES TESTING 76 Data A n a l y s i s — A d d i t i o n a l Research Q u e s t i o n s 84 Summary 87 V SUMMARY, IMPLICATIONS FOR NURSING AND RECOMMENDATIONS . . 88 I m p l i c a t i o n s f o r N u r s i n g 89 Recommendations f o r F u r t h e r Research 94 BIBLIOGRAPHY 96 v i Page APPENDIXES 105 A. B a l a n c e Sheet P r o c e d u r e 106 B. Goal S e t t i n g C o n t r a c t 109 C. W e l l - B e i n g R a t i n g S c a l e 110 D. Consent Form 112 E. Measurement o f Dependent V a r i a b l e s 113 F. Face Sheet 115 G. I n t e r v i e w Guide 116 H. P r o g r e s s Sheet 118 v i i LIST OF TABLES TABLE Page I. DEMOGRAPHIC CHARACTERISTICS EXPERIMENTAL AND CONTROL GROUPS 65 II MEAN BETWEEN DIALYSES WEIGHT GAINS INTERVENTION PHASE EXPERIMENTAL AND CONTROL GROUPS 76 I I I MEAN PRE-DIALYSIS SERUM POTASSIUM LEVELS INTERVENTION PHASE EXPERIMENTAL AND CONTROL GROUPS 77 IV BETWEEN DIALYSES WEIGHT GAINS PRE-INTERVENTION, INTERVENTION AND FOLLOW-UP PHASES EXPERIMENTAL AND CONTROL GROUPS 78 V PRE-DIALYSIS SERUM POTASSIUM PRE-INTERVENTION, INTERVENTION AND FOLLOW-UP PHASES EXPERIMENTAL AND CONTROL GROUPS 79 VI BETWEEN DIALYSES WEIGHT GAINS BETWEEN PHASES EXPERIMENTAL AND CONTROL GROUPS 81 VII PRE-DIALYSIS SERUM POTASSIUM BETWEEN PHASES EXPERIMENTAL AND CONTROL GROUPS . . . . . 82 V I I I RELATIONSHIPS BETWEEN DEMOGRAPHIC AND DEPENDENT VARIABLES EXPERIMENTAL AND CONTROL PATIENTS 85 v i i i ACKNOWLEDGEMENT The w r i t e r wishes t o e x p r e s s her g r a t i t u d e t o Dr. J . P r i c e and Miss Helen Smith, t o the s t a f f o f t h e Vancouver General H o s p i t a l Renal U n i t , and e s p e c i a l l y t o the p a t i e n t s f o r t h e i r a s s i s t a n c e and c o o p e r a t i o n d u r i n g t h i s s t u d y . i x CHAPTER I INTRODUCTION The p a t i e n t w i t h c h r o n i c r e n a l f a i l u r e who i s dependent on hemo-d i a l y s i s t o s u s t a i n h i s l i f e i s f a c e d w i t h a m u l t i t u d e o f problems which have r e p e r c u s s i o n s i n a l l a r e a s o f h i s p e r s o n a l and s o c i a l l i f e . These problems range from t h e p s y c h o l o g i c a l s t r e s s t h a t accompanies l e a r n i n g t o cope w i t h l i f e a r t i f i c i a l l y m a i n t a i n e d by machine r y , t o the d a i l y annoyances o f h a v i n g t o adhere t o a m e d i c a l regimen. O b s e r v a t i o n s o f p a t i e n t s on lo n g term h e m o d i a l y s i s i n t h e c l i n i c a l s e t t i n g r e v e a l t h a t both p a t i e n t s and t he d i a l y s i s s t a f f e x p r e s s g r e a t c o n c e r n and devote much o f t h e i r a t t e n t i o n and time t o the problems c r e a t e d by t h e consequences o f non-adherence t o t h e d i e t and f l u i d r e s t r i c t i o n s , which r e p r e s e n t a s i g n i f i c a n t p o r t i o n o f the h e m o d i a l y s i s regimen. In s p i t e o f p a t i e n t e d u c a t i o n programs which f r e q u e n t l y i n v o l v e d o c t o r s , n u r s e s and d i e t i t i a n s who a l l r e i n f o r c e t he same i n f o r m a t i o n , p a t i e n t s c o n t i n u e t o e x p e r i e n c e t h e s e d i f f i c u l t i e s w i t h t h e i r d i e t and f l u i d r e s t r i c t i o n s . Nurses i n h e m o d i a l y s i s s e t t i n g s a r e c o n f r o n t e d w i t h t h e e v i d e n c e o f non-adherence t o the d i e t a r y regimen and t h e a t t e n d a n t d i f f i c u l t i e s t h i s p r e s e n t s both i n terms o f p a t i e n t c o m f o r t and w e l l - b e i n g , and i n terms o f t h e management o f d i a l y s i s f o r t h e s e p a t i e n t s . Concern f o r p a t i e n t w e l f a r e l e a d s t o an attempt on the p a r t o f the d i a l y s i s s t a f f to encourage p a t i e n t adherence t h r o u g h r e p e a t e d r e m i n d e r s o f the n e c e s s i t y f o r the r e s t r i c t i o n s , and f r e q u e n t l y p r o g r e s s t o warnings and t h r e a t s o f the consequences t o the p a t i e n t o f c o n t i n u e d non-adherence. What too o f t e n d e v e l o p s i s a v i c i o u s c y c l e where p a t i e n t s 1 2 cannot meet s t a f f e x p e c t a t i o n s and withdraw from t he s t a f f when the l a t t e r attempt t o l e c t u r e them about t h e i r f a i l u r e t o adhere t o t h e i r r e s t r i c t i o n s . S t a f f , s e n s i n g t h a t t h e i r messages a r e not " g e t t i n g through", i n t e n s i f y t h e i r attempts by f r e q u e n t r e p e t i t i o n o f i n c r e a s i n g l y t h r e a t e n i n g i n f o r m a t i o n . The p a t i e n t o f t e n b e g i n s t o f e e l t h a t h i s i n a b i l i t y t o adhere t o t h e d i e t and f l u i d r e s t r i c t i o n s r e f l e c t s a l a c k o f c h a r a c t e r , and h i s s e l f - e s t e e m d e c r e a s e s . The p a t i e n t responds by f u r t h e r withdrawal from t he s t a f f , and the c y c l e i s complete. Why do p a t i e n t s have such d i f f i c u l t i e s i n a d h e r i n g t o t h e i r d i e t and f l u i d r e s t r i c t i o n s ? More i m p o r t a n t l y , what can n u r s e s do t o i n t e r -vene i n t o t h i s c y c l e and e f f e c t i n c r e a s e d p a t i e n t adherence t o t h e d i e t and f l u i d r e s t r i c t i o n s ? PURPOSE OF THE STUDY The p r e s e n t s t u d y was an attempt t o demonstrate i n c r e a s e d p a t i e n t adherence t o f l u i d and p o t a s s i u m r e s t r i c t i o n s t h r o u g h a n u r s i n g i n t e r -v e n t i o n which p r o v i d e d p a t i e n t s w i t h t he o p p o r t u n i t y t o e s t a b l i s h t h e i r own g o a l s w i t h i n a d e c i s i o n - m a k i n g model. PROBLEM STATEMENT Does a n u r s i n g i n t e r v e n t i o n which u t i l i z e s a d e c i s i o n - m a k i n g model t o a s s i s t p a t i e n t s i n e s t a b l i s h i n g p e r s o n a l g o a l s f o r adherence t o f l u i d and p o t a s s i u m r e s t r i c t i o n s s i g n i f i c a n t l y d e c r e a s e weight g a i n s between d i a l y s e s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s , compared w i t h t h e v a l u e s f o r t h e s e v a r i a b l e s i n a c o n t r o l group which does not have th e i n t e r v e n t i o n ? HYPOTHESES 1. There w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o f l u i d r e s t -r i c t i o n s between h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r -3 ..vention u t i l i z i n g goal s e t t i n g i n a d e c i s i o n - m a k i n g model and hemo-d i a l y s i s p a t i e n t s who were no t exposed t o t h e i n t e r v e n t i o n as measured by between d i a l y s e s w e i g h t g a i n s . A l t e r n a t i v e h y p o t h e s i s : Between d i a l y s e s w e i g h t g a i n s w i l l be s i g n i f i c a n t l y lower f o r h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n which u t i l i z e d goal s e t t i n g w i t h i n a d e c i s i o n - m a k i n g model than f o r h e m o d i a l y s i s p a t i e n t s not exposed t o t h e i n t e r v e n t i o n . 2. There w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o the d i e t r e s t r i c t i o n s between d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r -v e n t i o n u t i l i z i n g goal s e t t i n g i n a d e c i s i o n - m a k i n g model and h e m o d i a l y s i s p a t i e n t s who were not exposed t o t h e i n t e r v e n t i o n as measured by p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . A l t e r n a t i v e h y p o t h e s i s : P r e - d i a l y s i s serum p o t a s s i u m l e v e l s w i l l be s i g n i f i c a n t l y lower f o r h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n which u t i l i z e d g o a l s e t t i n g i n a d e c i s i o n - m a k i n g model than f o r h e m o d i a l y s i s p a t i e n t s not exposed t o the i n t e r v e n t i o n . DEFINITION OF TERMS 1. H e m o d i a l y s i s - " D i a l y s i s , as i t a p p l i e s t o c l i n i c a l m e d i c i n e may be d e f i n e d as t h e removal o f u n d e s i r a b l e s u b s t a n c e s from t h e body by d i f f u s i v e t r a n s f e r a c r o s s a semi-permeable membrane. I t a f f o r d s a d i r e c t means f o r c o r r e c t i n g t h e c h e m i c a l and c l i n i c a l a b n o r m a l i t i e s o f s e v e r e uremia.1.'"' 2. Compliance - Compliance may be d e f i n e d as "the e x t e n t t o which t h e L.W. Bluemele, " D i a l y s i s , " i n D i s e a s e s o f the Kidney, eds., M.B. S t r a u s s and L.G. Welt (2d. ed.; Boston: L i t t l e , Brown and Co.,1971), p. 343. 4 p a t i e n t ' s b e h a v i o r , i n terms o f t a k i n g m e d i c a t i o n s , f o l l o w i n g d i e t s o r e x e c u t i n g o t h e r l i f e - s t y l e changes, c o i n c i d e s w i t h t h e 2 c l i n i c a l p r e s c r i p t i o n . ' 3. Between D i a l y s e s Weight Gains - Between d i a l y s e s w e i g h t g a i n s i s t h e d i f f e r e n c e between t h e p a t i e n t ' s p r e - d i : a l y s i s w e i g h t and h i s most r e c e n t p o s t - d i a l y s i s w eight. 4. P r e - D i a l y s i s Serum Potassium - P r e - d i a l y s i s serum p o t a s s i u m i s t h e serum p o t a s s i u m l e v e l i n the p a t i e n t ' s b l o o d i m m e d i a t e l y p r i o r t o d i a l y s i s as measured by flame photometry. 5. B a l a n c e Sheet P r o c e d u r e - The B a l a n c e Sheet P r o c e d u r e i s a d e c i s i o n -making t o o l adapted from J a n i s and Mann. I t r e f e r s t o t h e i d e n t i -f i c a t i o n o f t h e p o s i t i v e and n e g a t i v e consequences o f adherence and non-adherence t o t h e d i e t and f l u i d r e s t r i c t i o n s . (See Appendix A.) 6. Goal S e t t i n g C o n t r a c t - Goal s e t t i n g r e f e r s t o the e s t a b l i s h m e n t o f a w r i t t e n s t a t e m e n t o f the p a t i e n t ' s g o a l s i n r e l a t i o n t o between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . (See Appendix B.) 7. W e l l - B e i n g R a t i n g S c a l e - The W e l l - B e i n g R a t i n g S c a l e r e f e r s t o the s c a l e d e v e l o p e d by t h e i n v e s t i g a t o r t o d e t e r m i n e t h e p a t i e n t ' s e x p e r i e n c e o f the consequences he had i d e n t i f i e d i n t h e B a l a n c e Sheet P r o c e d u r e . (See Appendix C. ) 8. P r e - I h t e r v e n t i o n Phase - The P r e - I n t e r v e n t i o n Phase r e f e r s t o the s i x month p e r i o d i m m e d i a t e l y p r e c e d i n g t he i n i t i a t i o n o f the n u r s i n g i n t e r v e n t i o n . ^D.L. Sackett.andoR.B. Haynes (efl s . ) , C bm p 1 i a n c e. Wi t h ^  T h e r a pe; u t i c  Regimens {Baltimore-:The Johns Hopkins U n i v e r s i t y Press:,; 1976), _p_i . x i . 3 I.L. J a n i s and L. Mann, "A C o n f l i c t T h e o ry Approach t o A t t i t u d e Change and D e c i s i o n - M a k i n g , " i n P s y c h o l o g i c a l F o u n d a t i o n s o f A t t i t u d e s , eds., A; Greenwald, T. Brock and T. Ostrom (New York: Academic P r e s s , 1 9 6 8 ) , pp. 329-363. 5 9. I n t e r v e n t i o n Phase - T h i s phase began w i t h t h e f i r s t d i a l y s i s a f t e r t he E x p e r i m e n t a l p a t i e n t s completed t he i n t e r v i e w , B a l a n c e Sheet P r o c e d u r e and goal s e t t i n g and c o n t i n u e d f o r a t o t a l o f f i f t e e n d i a l y s e s . D u r i n g t h i s phase d a t a on the between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s were c o l l e c t e d f o r both groups i n t h e st u d y . In a d d i t i o n , t h e E x p e r i m e n t a l group p a t i e n t s completed the W e l l - B e i n g R a t i n g S c a l e a t each d i a l y s i s . 10-Follow-Up Phase - The Follow-Up phase r e f e r s t o t h e n i n e d i a l y s e s i m m e d i a t e l y f o l l o w i n g t h e l a s t d i a l y s i s o f t h e i n t e r v e n t i o n phase. Data on the between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum po t a s s i u m l e v e l s c o n t i n u e d t o be c o l l e c t e d f o r both g r o u p s , but n e i t h e r group was approached by t h e i n v e s t i g a t o r . ASSUMPTIONS 1. Between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s a r e v a l i d i n d i c a t o r s o f adherence t o t h e d i e t a r y and f l u i d r e s t r i c t i o n s i n c h r o n i c h e m o d i a l y s i s p a t i e n t s . 2. Adherence t o the d i e t a r y and f l u i d r e s t r i c t i o n s r e s u l t s i n a h i g h e r l e v e l o f h e a l t h and w e l l - b e i n g f o r the p a t i e n t . LIMITATIONS 1. The sample c o n s i s t s o f o n l y i n - c e n t r e h e m o d i a l y s i s p a t i e n t s i n one l a r g e r e n a l u n i t . Both t he e x p e r i m e n t a l and c o n t r o l groups were drawn from t h a t group o f p a t i e n t s which d i a l y z e s t h r e e times p er week d u r i n g t h e day. They m a y , t h e r e f o r e , n o t be r e p r e s e n t a t i v e o f home d i a l y s i s p a t i e n t s , h e m o d i a l y s i s p a t i e n t s from o t h e r u n i t s , h e m o d i a l y s i s p a t i e n t s who d i a l y z e d u r i n g t h e n i g h t o r p a t i e n t s who d i a l y z e o n l y t w i c e per week. T h i s l i m i t s t h e g e n e r a l i z a b i l i t y o f the f i n d i n g s . 2. Data were o b t a i n e d on a s m a l l sample ( E x p e r i m e n t a l N=8, C o n t r o l N=8). T h i s must be taken i n t o a c c o u n t when i n t e r p r e t i n g t h e f i n d i n g s . 6 OUTLINE OF THE STUDY The p r e s e n t r e p o r t i s the d e s c r i p t i o n o f an e x p e r i m e n t a l study o f t h e e f f e c t s o f a n u r s i n g i n t e r v e n t i o n u t i l i z i n g p e r s o n a l goal s e t t i n g by p a t i e n t s i n r e l a t i o n t o between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s w i t h i n a d e c i s i o n - m a k i n g model on t h e i r adherence t o d i e t and f l u i d r e s t r i c t i o n s . The r e s e a r c h d e s i g n i n v o l v e s s e l e c t i o n o f a sample a c c o r d i n g t o p r e - e s t a b l i s h e d c r i t e r i a and random assignment o f s u b j e c t s t o e i t h e r E x p e r i m e n t a l o r C o n t r o l c o n d i t i o n s . The E x p e r i m e n t a l group was exposed t o the n u r s i n g i n t e r v e n t i o n which c o n s i s t e d o f d e c i s i o n - m a k i n g and p e r s o n a l goal s e t t i n g i n r e l a t i o n t o between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . The E x p e r i m e n t a l group p a t i e n t s a l s o completed a W e l l - B e i n g R a t i n g S c a l e a t each d i a l y s i s and c h a r t e d t h e i r p r o g r e s s toward t h e i r g o a l s on a P r o g r e s s Sheet f o r the f i f t e e n d i a l y s e s c o m p r i s i n g t h e I n t e r v e n t i o n Phase. The n u r s i n g i n t e r v e n t i o n was t h e independent v a r i a b l e . The dependent v a r i a b l e s were between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s , and data on t h e s e v a r i a b l e s were c o l l e c t e d f o r a l l p a t i e n t s i n t h e s t u d y i n a l l t h r e e phases: t h e s i x month P r e - I n t e r v e n t i o n Phase, the f i f t e e n d i a l y s e s d u r i n g t he I n t e r v e n t i o n Phase, and the n i n e d i a l y s e s d u r i n g t h e Follow-Up Phase. SIGNIFICANCE TO NURSING In view o f the f a c t t h a t r e s t r i c t i o n s o f f l u i d and c e r t a i n foods i s v i t a l l y i m p o r t a n t t o t h e h e a l t h and w e l l - b e i n g o f h e m o d i a l y s i s p a t i e n t s and t h a t t h e y e x p e r i e n c e much d i f f i c u l t y i n a d h e r i n g t o t h e s e r e s t r i c t i o n s , i t appears t h a t i n t e r v e n t i o n s aimed a t impr o v i n g adherence t o t h e d i e t and f l u i d r e s t r i c t i o n s a r e i m p o r t a n t . A l t h o u g h i t i s t h e r e s p o n s i b i l i t y o f the p h y s i c i a n t o p r e s c r i b e t h e r e s t r i c t i o n s f o r the p a t i e n t , and o f the d i e t i t i a n t o i n t e r p r e t t h e s e r e s t r i c t i o n s t o the p a t i e n t and h i s 7 f a m i l y and h e l p them e s t a b l i s h the d i e t p l a n , i t i s the n u r s e who i s i n t he b e s t p o s i t i o n t o a s s i s t t h e p a t i e n t i n f o l l o w i n g t h e s e r e s t r i c t i o n s on t h e l o n g - t e r m b a s i s r e q u i r e d due t o her c o n t i n u o u s c o n t a c t w i t h him. In r e l a t i o n t o t h e r e s e a r c h on c o m p l i a n c e t o m e d i c a l regimens, Marston comments t h a t , " N e a r l y a l l the r e s e a r c h t o d a t e has been condu c t e d by p h y s i c i a n s o r b e h a v i o r a l s c i e n t i s t s the problems o f e n c o u r a g i n g p e o p l e w i t h known d i s e a s e c o n d i t i o n s t o f o l l o w t h e i r p h y s i c i a n s ' 4 recommendations a r e a p p r o p r i a t e l y o f c o n c e r n t o n u r s i n g . " The n u r s i n g s t a f f has t h e o p p o r t u n i t y t o o b s e r v e the p a t i e n t ' s r e s p o n s e t o t h e r e s t r i c t i o n s and can i n t e r v e n e e a r l y and o v e r p r o l o n g e d p e r i o d s w i t h t h e p a t i e n t . The n u r s e i s i n a s t r a t e g i c p o s i t i o n t o e v a l u a t e c o n t i n u a l l y t h e p a t i e n t ' s r e s p o n s e t o her i n t e r v e n t i o n . T h e r e e x i s t s v e r y l i t t l e i n f o r m a t i o n o f s p e c i f i c i n t e r v e n t i o n s which t h e nurse can u t i l i z e t o improve her p a t i e n t ' s adherence t o the t h e r a p e u t i c regimen. T h e o r e t i c a l l y a t l e a s t , t h e b e n e f i t s o f such an i n t e r v e n t i o n would i n c l u d e b e t t e r p h y s i c a l and e m o t i o n a l h e a l t h f o r the p a t i e n t , d e c r e a s e d i n c i d e n c e o f c o m p l i c a t i o n s , d e c r e a s e d h e a l t h c a r e c o s t s , and i n c r e a s e d s a t i s f a c t i o n f o r t h e p a t i e n t and h i s f a m i l y . As a n u r s e i n v o l v e d i n the c a r e o f p a t i e n t s w i t h c h r o n i c r e n a l f a i l u r e , t h i s i n v e s t i g a t o r i s c o n c e r n e d about the e f f e c t s , i n p a r t i c u l a r " . ' the l o n g - t e r m p a t h o p h y s i o l o g i c a l e f f e c t s , o f non-compliance w i t h t h e d i e t and f l u i d r e s t r i c t i o n s i n h e m o d i a l y s i s p a t i e n t s . I n c r e a s e d m o r b i d i t y r e s u l t s i n more f r e q u e n t h o s p i t a l a d m i s s i o n s , which add t o t h e o v e r a l l h e a l t h - c a r e c o s t s , and r e s u l t s i n t h e l o s s o f work and a d i s r u p t i o n i n f a m i l y l i f e f o r the p a t i e n t . Most s e r i o u s o f c o u r s e , i s premature o r M.V. Marston, "Compliance With M e d i c a l Regimens: A Review o f the L i t e r a t u r e , " N u r s i n g R e s e a r c h , 19:312, J u l y - A u g u s t , 1970. 8 sudden death from p o t a s s i u m o v e r l o a d , which i s a v e r y r e a l p o s s i b i l i t y i n t h i s p a t i e n t group. The maintenance, p r o t e c t i o n and enhancement o f the s e l f - e s t e e m and d i g n i t y o f the p a t i e n t group i n v o l v e d was the fundamental c o n c e r n which prompted the s e l e c t i o n o f t h i s r e s e a r c h t o p i c . D i s c u s s i o n s o f d i e t a r y c o m p l i a n c e i s an a r e a o f p a r t i c u l a r ^ f r u s t r a t i o n t o both t h e p a t i e n t and the n u r s i n g s t a f f . V e r y o f t e n t h e s i t u a t i o n begins w i t h e x p l a n a t i o n s o f what i s e x p e c t e d o f t h e p a t i e n t , p r o g r e s s e s t o warnings and o c c a s i o n a l t h r e a t s o f d i r e consequences o f non-compliance, and d e t e r i o r a t e s t o a s t a l e m a t e o f h o p e l e s s r e s i g n a t i o n on both s i d e s . P a t i e n t s o f t e n c o m p l a i n t h a t t h e y a r e l e c t u r e d t o l i k e c h i l d r e n and p o i n t o u t , q u i t e c o r r e c t l y , t h a t t he n u r s e does not know what i t i s l i k e t o c o n s t a n t l y deny o n e s e l f t h e p l e a s u r e s o f c e r t a i n foods and bev e r a g e s . Resentment i s a commonly e x p r e s s e d emotion. In r e c o g n i t i o n o f the dependent, n o n - a d u l t s t a t u s p a t i e n t s o f t e n f e e l t h e y a r e a s s i g n e d , t h i s s t u d y attempts t o p l a c e t he i n t e r a c t i o n between the p a t i e n t and t h e nu r s e i n r e g a r d t o the d i e t a r y regimen on an equal b a s i s by g i v i n g t he p a t i e n t t he c o n t r o l o v e r e s t a b l i s h i n g g o a l s f o r h i m s e l f . ETHICAL CONSIDERATIONS A l l p a t i e n t s p a r t i c i p a t i n g i n t h e s t u d y s i g n e d a c o n s e n t form which was a l s o s i g n e d by h i s a t t e n d i n g p h y s i c i a n and a w i t n e s s . (See Appendix D.) The methodology d i d not r e q u i r e d e c e p t i o n o f any group i n o r d e r to p r e v e n t knowledge o f the r e a l purpose o f t h e s t u d y , nor d i d any group s u f f e r t he l a c k o f n e c e s s a r y t r e a t m e n t , i n c l u d i n g v i s i t s by d o c t o r s and d i e t i t i a n s . The purpose o f t h e s t u d y was e x p l a i n e d t o both groups. P a t i e n t s were t o l d t h a t c e r t a i n demographic i n f o r m a t i o n would be o b t a i n e d from t h e i r c h a r t s , but t h a t n e i t h e r names nor any o t h e r i d e n t i f y i n g 9 i n f o r m a t i o n would be used. A l l p a t i e n t s were i n f o r m e d t h a t p a r t i c i p a t i o n i n the st u d y i n v o l v e d a l l o w i n g one m i l l i l i t e r o f b l o o d t o be taken a t t h e b e g i n n i n g o f each d i a l y s i s f o r e i g h t weeks, f o r a t o t a l o f t w e n t y - f o u r m i l l i l i t e r s o v e r the s t u d y p e r i o d , and t h a t t h e i r pre and p o s t d i a l y s i s w e i g h t s would be r e c o r d e d t o determine w e i g h t g a i n s between d i a l y s e s . The amount o f b l o o d r e q u i r e d was m i n i m a l , a l t h o u g h i t i s r e c o g n i z e d t h a t p a t i e n t s w i t h c h r o n i c r e n a l f a i l u r e , and e s p e c i a l l y t h o s e on h e m o d i a l y s i s a r e anemic. The b l o o d specimen was o b t a i n e d a t t h e b e g i n n i n g o f d i a l y s i s , u s i n g t he n e e d l e t h a t was i n s e r t e d f o r t h e purpose o f d i a l y s i s , o r from the a r t e r i o - v e n o u s shunt i f t h e p a t i e n t had one, which e l i m i n a t e d t h e n e c e s s i t y o f an e x t r a v e n i p u n c t u r e t o o b t a i n t he sample. SUMMARY AND FOLLOWING CHAPTERS T h i s c h a p t e r d e s c r i b e s t he d i f f i c u l t i e s t h a t h e m o d i a l y s i s p a t i e n t s e x p e r i e n c e i n a d h e r i n g t o t h e d i e t and f l u i d r e s t r i c t i o n s and t h e l a c k o f e f f e c t i v e n u r s i n g i n t e r v e n t i o n t o promote t h i s adherence. The problem i n v e s t i g a t e d i n the s t u d y , the hypotheses t e s t e d , and the assumptions and l i m i t a t i o n s a r e s t a t e d , and terms d e f i n e d . The s i g n i f i c a n c e o f t h e problem t o the n u r s i n g c a r e o f t h i s group o f p a t i e n t s and the e t h i c a l c o n s i d e r a t i o n s a r e d i s c u s s e d . In t h e ne x t c h a p t e r , a s e l e c t e d r e v i e w o f t h e p e r t i n e n t l i t e r a t u r e i s p r o v i d e d which b r i e f l y c o v e r s t h e normal f u n c t i o n s o f the k i d n e y , r e n a l f a i l u r e and h e m o d i a l y s i s . The regimen which h e m o d i a l y s i s p a t i e n t s a r e p r e s c r i b e d i s d i s c u s s e d , and the major f i n d i n g s o f t h e r e s e a r c h on com p l i a n c e a r e h i g h l i g h t e d , w i t h s p e c i a l emphasis on the f i n d i n g s o f s t u d i e s o f co m p l i a n c e u s i n g h e m o d i a l y s i s p a t i e n t s . F i n a l l y , a d e s c r i p t i o n o f t h e t h e o r e t i c a l framework upon which t h i s s t u d y was based i s p r e s e n t e d . In C h a p t e r I I I , t h e methodology i s g i v e n , w i t h a d e s c r i p t i o n 10 o f the s e t t i n g i n w h i c h the s t u d y t o o k p l a c e , t h e c r i t e r i a f o r sample s e l e c t i o n , and the r e s e a r c h d e s i g n . A d e t a i l e d d e s c r i p t i o n o f the d a t a c o l l e c t i o n p r o c e d u r e s and t h e r e s e a r c h t o o l s used i s p r o v i d e d ; and a d d i t i o n a l r e s e a r c h q u e s t i o n s a r e posed. F i n a l l y , the methods used t o a n a l y z e the hypotheses and a d d i t i o n a l r e s e a r c h q u e s t i o n s a r e enumerated. An a n a l y s i s o f the c h a r a c t e r i s t i c s o f t h e s t u d y sample and t h e r e s p o n s e s o f the E x p e r i m e n t a l group t o the n u r s i n g i n t e r v i e w , the B a l a n c e Sheet and Goal S e t t i n g P r o c e d u r e s i s i n c l u d e d w i t h t h e p r e s e n t a t i o n o f the f i n d i n g s i n r e l a t i o n t o t h e t e s t i n g o f t h e hypotheses and a n a l y s i s o f t h e a d d i t i o n a l r e s e a r c h q u e s t i o n s i n C h a p t e r IV. The i m p l i c a t i o n s o f t h e s e f i n d i n g s f o r the n u r s i n g c a r e o f h e m o d i a l y s i s p a t i e n t s and t h e recommendations f o r f u r t h e r r e s e a r c h a r e p r e s e n t e d i n C h a p t e r V. CHAPTER II REVIEW OF THE PERTINENT LITERATURE The n a t u r e and scope o f the problem o f non-adherence t o t h e d i e t and f l u i d r e s t r i c t i o n s i n h e m o d i a l y s i s p a t i e n t s can be more f u l l y a p p r e c i a t e d by an u n d e r s t a n d i n g o f the f u n c t i o n s o f the normal k i d n e y , what o c c u r s when t h e s e normal f u n c t i o n s a r e l o s t , and a d e s c r i p t i o n o f the consequences o f non-adherence t o the regimen i n t h i s p a t i e n t popu-l a t i o n . In a d d i t i o n t o t h e s e t o p i c s , the d i s c u s s i o n i n t h i s c h a p t e r f o c u s e s on the p r e s e n t s t a t e o f knowledge o f c o m p l i a n c e b e h a v i o r and the r a t i o n a l e f o r the s e l e c t i o n o f J a n i s and Mann's D e c i s i o n - M a k i n g framework. THE NORMAL KIDNEY In h e a l t h , the k i d n e y i s the s i n g l e most i m p o r t a n t organ f o r the r e g u l a t i o n and maintenance o f the i n t e r n a l m i l i e u o f the body, w i t h i n the narrow l i m i t s c o m p a t i b l e w i t h l i f e . I t a c c o m p l i s h e s t h i s by s e l e c t i v e l y e x c r e t i n g , s e c r e t i n g , and r e a b s o r b i n g f l u i d s , e l e c t r o l y t e s , and the waste p r o d u c t s o f metabolism. The kidney a l s o s e r v e s as the major s i t e o f removal o f the m e t a b o l i c breakdown p r o d u c t s o f m e d i c a t i o n s , p o i s o n s and o t h e r t o x i n s ; and p l a y s an i m p o r t a n t r o l e i n the normal m i n e r a l i z a t i o n o f bones, and i n the p r o d u c t i o n o f r e d b l o o d c e l l s J M.R. W i l l s , The B i o c h e m i c a l Consequences o f C h r o n i c Renal  F a i l u r e ( L e i c e s t e r : The C a v e n d i s h P r e s s L t d . , 1971), p.12. 11 12 RENAL FAILURE The end r e s u l t o f a d i s t u r b a n c e i n r e n a l f u n c t i o n i s an a l t e r a t i o n i n the c o n s t i t u t i o n o f t h e i n t e r n a l environment,, which i s o f fundamental b i o c h e m i c a l s i g n i f i c a n c e i n t h e maintenance o f l i f e . The p a t i e n t can o f t e n s u r v i v e i n r e l a t i v e c o m f o r t u n t i l about n i n e t y p e r c e n t 2 o f h i s g l o m e r u l a r f i l t r a t i o n i s l o s t . The consequence o f c h r o n i c r e n a l f a i l u r e i s a p r o f o u n d and l e t h a l u p s e t i n the i n t e r n a l b i o c h e m i c a l b a l a n c e o f t h e body, known as uremia. The Uremic Syndrome i s compounded o f numerous p a t h o p h y s i o l o g i c a l and b i o c h e m i c a l changes r e f l e c t i n g d e c r e a s e d e x c r e t o r y , t u b u l a r , m e t a b o l i c and r e g u l a t o r y a c t i v i t i e s o f the k i d n e y . The c l i n i c a l syndrome o f uremia i n v o l v e s a l l o f t h e body's systems, due not o n l y t o the r e t a i n e d m e t a b o l i c p r o d u c t s , but a l s o t o t h e a s s o c i a t e d changes i n 3 e l e c t r o l y t e and a c i d - b a s e h o m e o s t a s i s . Brundage summarizes t h e s e h o m e o s t a t i c u p s e t s . They i n c l u d e : a z o t e m i a , as a r e s u l t o f t h e r e t e n t i o n o f n i t r o g e n o u s compounds such as u r e a , u r i c a c i d and c r e a t i n i n e ; e l e c t r o l y t e i m b a l a n c e s , caused by t h e r e t e n t i o n o f sodium, p o t a s s i u m , c h l o r i d e and magnesium; a c i d - b a s e i m b a l a n c e s , caused by t h e r e t e n t i o n o f hydrogen i o n s and a f a i l u r e o f the phosphate b u f f e r system; c a l c i u m and phosphate i m b a l a n c e s , caused by a r e t e n t i o n o f phosphate and poor a b s o r p t i o n o f c a l c i u m from t h e g u t , and h e m a t o l o g i c a l i m b a l a n c e s , caused by d e c r e a s e d p r o d u c t i o n o f e r y t h r o p o e i t i n by the k i d n e y and a d e c r e a s e d l i f e - s p a n o f r e d b l o o d c e l l s . There i s a l s o J.D. H a r r i n g t o n and E.R. B r e n e r , P a t i e n t Care i n Renal F a i l u r e ( P h i l a d e l p h i a : W.B. Saunders Co., 1973), p.47. W i l l s , o p . c i t . , p.25. 13 an i n c r e a s e d tendency to b l e e d , p r o b a b l y r e l a t e d t o a d e f i c i e n c y * i n 4 t h e number and q u a l i t y o f p l a t e l e t s . Hekelman and Ostendarp s t a t e t h a t t h e s e d i s t u r b a n c e s a f f e c t v i r t u a l l y a l l body systems and c r e a t e d i s t r e s s i n g symptoms f o r t h e p a t i e n t . N e u r o l o g i c a l l y , t h e r e i s f a t i g u e , d e c r e a s e d mental and p h y s i c a l v i g o r , r e s t l e s s n e s s , i n s o m n i a , p s y c h o t i c b e h a v i o r , muscle t w i t c h i n g and cramps, s e n s o r y and motor p e r i p h e r a l n e u r o p a t h i e s , c o n f u s i o n , c o n v u l s i o n s and coma. The g a s t r o i n t e s t i n a l system i s a l s o a f f e c t e d , w i t h a n o r e x i a , nausea and v o m i t i n g , s t o m a t i t i s , d i a r r h e a , and even g a s t r o i n t e s t i n a l b l e e d i n g b e i n g common problems. The s k i n f r e q u e n t l y becomes d r y and s c a l y , s e v e r e l y i t c h y and t a k e s on a y e l l o w i s h - b r o w n d i s c o l o r a t i o n , and t h e r e i s the l i k e l i h o o d o f bruising and p e t e c h i a due t o the i n c r e a s e d 5 b l e e d i n g tendency. Most o f t h e s e symptoms can be c o m p l e t e l y r e v e r s e d and o t h e r s a t l e a s t c o n t r o l l e d by i n t e r m i t t e n t h e m o d i a l y s i s . T h i s t r e a t m e n t i s r e s e r v e d f o r t h e t e r m i n a l s t a g e o f t o t a l r e n a l f a i l u r e when c o n s e r v a t i v e measures f o r c o n t r o l l i n g t h e uremic symptoms a r e no l o n g e r e f f e c t i v e , and t h e p a t i e n t ' s g l o m e r u l a r f i l t r a t i o n r a t e has dropped t o t h r e e t o f i v e p e r c e n t o f normal. D.J. Brundage, N u r s i n g Management o f Renal Problems ( S t . L o u i s : The C.V. Mosby Co., 1976), pp. 43-49. 5 F.P. Hekelman and C.A. O s t e n d a r p , " N u r s i n g Approaches t o C o n s e r v a t i v e Management o f Renal D i s e a s e , " N u r s i n g C l i n i c s o f North  America, 10:438-441, September, 1975. H a r r i n g t o n and B r e n e r , l o c . c i t . 14 HEMODIALYSIS In s p i t e o f t h e f a c t t h a t t h e f i r s t workable d i a l y z e r was a c t u a l l y used by A b e l , Rawntree and T u r n e r i n 1913 ?, and s e v e r a l models were d e v e l o p e d o v e r the y e a r s by o t h e r w o r k e r s , d i a l y s i s f o r t h e t r e a t m e n t o f c h r o n i c r e n a l f a i l u r e has o n l y become a r e a l i t y w i t h i n t h e p a s t two decades. T h i s l a g was caused by t h e m e c h a n i c a l and t e c h n i c a l d i f f i c u l t i e s i n v o l v e d i n implementing d i a l y s i s . The t h r e e fundamental problems were: the l a c k o f a dependable and r e p r o d u c i b l e d i a l y z i n g membrane, a good a n t i c o a g u l a n t , and most i m p o r t a n t l y f o r p a t i e n t s w i t h c h r o n i c r e n a l o f a i l u r e , t he l a c k o f b l o o d stream a c c e s s f o r r e p e a t e d t r e a t m e n t s . The d i s c o v e r y by S c r i b n e r and h i s c o l l e a g u e s o f the T e f l o n -S i l a s t i c shunt which c o u l d be used f o r r e p e a t e d a c c e s s t o the c i r c u l a t i o n g surmounted the f i n a l o b s t a c l e and opened t h e way f o r c h r o n i c h e m o d i a l y s i s . S i n c e t h e e a r l y 1960 1s h e m o d i a l y s i s f a c i l i t i e s have expanded r a p i d l y . A l t h o u g h the t e c h n i c a l and e n g i n e e r i n g problems have not been s o l v e d c o m p l e t e l y , h e m o d i a l y s i s i s now a r e l a t i v e l y s i m p l e , s a f e , and e f f e c t i v e method f o r m a i n t a i n i n g the l i v e s o f thousands o f i n d i v i d u a l s w i t h end-s t a g e r e n a l d i s e a s e . However, t h i s a r t i f i c i a l means o f p r e s e r v i n g l i f e i s not w i t h o u t i t s problems and drawbacks. As Abram p o i n t s o u t , " D i a l y s i s makes you f e e l b e t t e r . I t does not make you f e e l w e l l . " 1 0 7 J . J . A b e l , L.G. Rawntree and B.B. T u r n e r , "The Removal o f D i f f u -s a b l e S u b s t a n c es from the C i r c u l a t i n g B l o o d by Means o f D i a l y s i s , " T r a n s a c t i o n s o f t h e A s s o c i a t i o n o f American P h y s i o l o g i s t s , 28:41, 1913. Q C.F. Gutch and M.H. S t o n e r , Review o f H e m o d i a l y s i s f o r Nurses  and D i a l y s i s P e r s o n n e l (2d. ed.; S t . L o u i s : The C.V. Mosby Co., 1975), p.38. q W.E. Q u i n t o n , D.H. D i l l a r d and B.H. S c r i b n e r , " C a n n u l a t i o n o f B l o o d V e s s e l s f o r P r o l o n g e d D i a l y s i s , " T r a n s a c t i o n s o f the American  S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, 6:104, 1960. 1 0H.S. Abram, G.L. Moore and F.B. W e s t e r v e l t , " S u i c i d a l B e h a v i o r i n C h r o n i c D i a l y s i s P a t i e n t s , " American J o u r n a l o f P s y c h i a t r y , 127: 1202, March, 1971. 15 PHYSICAL PROBLEMS ASSOCIATED WITH CHRONIC HEMODIALYSIS D e s p i t e the f a c t t h a t d i a l y s i s c o r r e c t s the major b i o c h e m i c a l a b n o r m a l i t i e s o f uremia, the p a t i e n t on :Tohg t e r m / h e m o d i a l y s i s i s f a c e d w i t h c o n t i n u i n g p h y s i c a l problems. Some o f t h e s e a r e the r e s u l t o f the f a c t t h a t h e m o d i a l y s i s can o n l y a p p r o x i m a t e , a t b e s t , t h e f u n c t i o n o f t h e normal k i d n e y i n r i d d i n g the body o f uremic t o x i n s , and a l s o t h a t t h i s i s an i n t e r m i t t e n t p r o c e d u r e . In between d i a l y s e s , t o x i c wastes b u i l d up i n the b l o o d and then a r e r a p i d l y removed i n f o u r t o e i g h t hours on d i a l y s i s . The e f f e c t s o f t h i s r a p i d s h i f t o f l a r g e volumes o f f l u i d and waste p r o d u c t s i s not f u l l y known. S t i l l o t h e r problems a r i s e from the h e m o d i a l y s i s p r o c e d u r e i t s e l f . F o r d has i d e n t i f i e d t h e s e c o n t i n u i n g p h y s i c a l problems a s : anemia, which l e a d s t o l e t h a r g y , f a t i g u e , weakness, and an i n a b i l i t y t o s u s t a i n p h y s i c a l e f f o r t ; bone d i s e a s e , which m a n i f e s t s i t s e l f i n bone and j o i n t p a i n , c a l c i f i c a t i o n o f s o f t t i s s u e s , and p a t h o l o g i c a l f r a c t u r e s ; i n s o m n i a ; p r u r i t u s ; p e r i p h e r a l n e u r o p a t h i e s ; a n o r e x i a , nausea and v o m i t i n g and muscle w a s t i n g ; an i n c r e a s e d s u s c e p t i b i l i t y t o i n f e c t i o n ; and the d i a l y s i s d i s e q u i l i b r i u m syndrome, which may cause nausea, v o m i t i n g , head-ache and even c o n v u l s i o n s when t h e p a t i e n t i s on d i a l y s i s . ^ V e r t e s d i s c u s s e s t h e problem, o f h y p e r t e n s i o n i n c h r o n i c hemo-d i a l y s i s p a t i e n t s and t h e tendency f o r them t o become volume o v e r l o a d e d which can c r e a t e o r e x a c e r b a t e c a r d i o v a s c u l a r problems, s h o r t n e s s o f 12 b r e a t h and pulmonary edema. In an e f f o r t t o m i n i m i z e t h e s e n e g a t i v e symptoms and t o i n c r e a s e t h e p a t i e n t ' s w e l l - b e i n g and p h y s i c a l h e a l t h , a s p e c i a l l y t a i l o r e d d i e t M L . F o r d , "A Q u e s t i o n o f B a l a n c e : The E f f e c t s o f C h r o n i c Renal F a i l u r e and Long-Term D i a l y s i s , " The Canadian Nurse, 75:23-24, March, 1977. 1 p V. V e r t e s , "Management o f H y p e r t e n s i o n A s s o c i a t e d With C h r o n i c Renal F a i l u r e , " P o s t g r a d u a t e M e d i c i n e , 52:123-126, F e b r u a r y , 1972. 16 i s p r e s c r i b e d f o r each i n d i v i d u a l , which i s d e s i g n e d t o r e d u c e t h e i n t a k e o f s u b s t a n c e s which c o n t r i b u t e t o t h e s e d i s t r e s s i n g symptoms. DIET AND FLUID RESTRICTIONS IN CHRONIC RENAL FAILURE Gutch and S t o n e r p o i n t o u t t h a t i n o r d e r t o a c h i e v e t h e same r e s u l t s as do the normal k i d n e y s , d i a l y s i s would have t o be c o n t i n u o u s , which a t t h e p r e s e n t s t a g e o f 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 i s both u n d e s i r a b l e and i m p r a c t i c a l . Thus a compromise between what i s b e s t f o r t h e p a t i e n t ' s h e a l t h , and t h e p r a c t i c a l c o n s i d e r a t i o n s o f t i m e , f a c i l i t i e s and money i s r e a c h e d by h a v i n g p a t i e n t s d i a l y z e two o r t h r e e times per week. In between d i a l y s e s t h e waste p r o d u c t s and excess f l u i d s a ccumulate. For the sake o f t h e p a t i e n t ' s h e a l t h , w e l l - b e i n g and c o m f o r t , i t i s u n d e s i r a b l e t h a t he become o v e r l o a d e d w i t h t h e s e waste p r o d u c t s between d i a l y s e s . Rapid s h i f t s o f l a r g e volumes o f f l u i d , u r e a , p o t a s s i u m and 13 o t h e r s u b s t a n c e s can make the p a t i e n t v e r y i l l , and c o u l d be dangerous. O e h l a r t s t a t e s t h a t the aim o f d i e t t h e r a p y f o r p a t i e n t s on h e m o d i a l y s i s i s t o m a i n t a i n t h e p a t i e n t i n b i o c h e m i c a l c o n t r o l between d i a l y s e s and t o a v o i d t h e development o f c o m p l i c a t i o n s . She says t h a t w h i l e the a c t u a l d i e t and f l u i d r e s t r i c t i o n s v a r y w i t h t h e i n d i v i d u a l p a t i e n t , i n g e n e r a l , p r o t e i n , sodium, p o t a s s i u m and f l u i d s a r e r e s t r i c t e d 14 to some degree. Gutch and S t o n e r emphasize t h e importance o f d i e t a r y management, " I t i s v i t a l l y i m p o r t a n t t o remember t h a t f o r the p a t i e n t , d i a l y s i s i s an i n t e r m i t t e n t t r e a t m e n t f o r h i s l a c k o f k i d n e y f u n c t i o n . Proper d i e t and f l u i d management a r e h i s r x o h t i n u o u s " t r e a t m e n t . O v e r a l l management Gutch and S t o n e r , o p . c i t . , p. 154. ^ C . F . O e h l a r t , " A n Assessment o f D i e t a r y C o n t r o l i n P a t i e n t s on H e m o d i a l y s i s , " i n N u r s i n g and The Nephrology P a t i e n t , ed. L. S c h l o t t e r ( F l u s h i n g , New York: M e d i c a l E x a m i n a t i o n P u b l i s h i n g Co.; I n c . , 1973), p.58. 17 involves both, and no amount of d i a l y s i s can compensate for inappropriate • + , ..15 in take. The consequences for the pat ient which resu l t from excess intake of p ro te in , sodium, potassium and f l u i d can range from mi ld ly annoying prur i tus to sudden death from potassium overload. In addit ion to physical manifestations between d ia l yses , excessive intake of food and f l u i d create unique problems for the patient during d i a l y s i s when they are rap id ly removed from the c i r c u l a t i o n . Davidson and Scribner state that excessive protein intake i s re f -lected in a high blood urea nitrogen l e v e l . This has been implicated as the cause of the a l tered i n te l l ec tua l and emotional states that are frequently found in patients wi th,chronic renal f a i l u r e . High blood urea nitrogen leve ls are also believed to be responsible for the d i a l y s i s d i s -equi l ibr ium syndrome, and may be cause peripheral neuropa th ies .^ Levinsky and Relman state that f l u i d and sodium work together in maintaining f l u i d balance. An overload of f l u i d can cause elevated blood pressure, resu l t ing in vascular problems, increased kidney damage,increased r i sk of cerebral vascular accident , v isual problems, pulmonary edema, congestive heart f a i l u r e , and systemic edemaJ 7 Excessive intake of potassium leads to an elevat ion of the serum potassium level in patients on hemodialysis, who are unable to excrete th is substance through the kidneys. T h i s , says Harrington and Brener can cause electrocardiographic changes, cardiac arrythmias and eventual ly — Gutch and Stoner, op. c i t . , p.153. 16 R.C. Davidson and B.H. Scr ibner , A Phys ic ian 's Syllabus for the  Treatment of Chronic Renal Fa i lu re (Seat t le , Washington: Seat t le A r t i f i c i a l Kidney Center, 1967), p.7. ~ ^ ? N . G . Levinsky and A .S . Relman, "F lu id and E lec t ro ly te Balance," in Medicine, eds . , C.S. Keefer and R.W. Wilk ins (Boston: L i t t l e , Brown and Co. , 1970), p.836. 18 c a r d i a c s t a n d s t i l l . O ther m a n i f e s t a t i o n s o f e x c e s s i v e l y h i g h serum p o t a s s i u m i n c l u d e f l a c c i d p a r a l y s i s , slow r e s p i r a t i o n s , a n x i e t y , c o n v u l s s i o n s and a n e s t h e s i a . The m e d i c a l regimen p r e s c r i b e d f o r the d i a l y s i s p a t i e n t i s p o s s i b l y one o f the most d i f f i c u l t o f any regimen, both i n terms o f l e a r n i n g t h e regimen and o f c a r r y i n g i t o u t . T h i s , c o u p l e d w i t h t h e f a c t t h a t the p a t i e n t i s e x p e c t e d t o f o l l o w i t on a l o n g term b a s i s , perhaps the r e s t o f h i s l i f e , c r e a t e s an e s p e c i a l l y f o r m i d a b l e t a s k . Brundage summarizes t h e p r o s c r i p t i o n s and p r e s c r i p t i o n s o f t h e h e m o d i a l y s i s regimen, which i n c l u d e : h e m o d i a l y s i s appointments and r e s t r i c t i o n o f p r o t e i n , p o t a s s i u m , sodium and f l u i d and v a r i o u s medi- . 19 c a t i o n s . Hekelman and Ostendarp i n d i c a t e t h a t t h e p r e s c r i b e d m e d i c a t i o n s amount t o a major regimen by t h e m s e l v e s , and i n c l u d e such n e c e s s a r y drugs as p h o s p h a t e - b i n d i n g m e d i c a t i o n s i n a d d i t i o n t o v i t a m i n s , c a l c i u m , V i t a m i n D, a n t i h y p e r t e n s i v e s , s t o o l s o f t e n e r s o r l a x a t i v e s , 20 s e d a t i v e s and s l e e p i n g p i l l s . MEASURING PATIENT COMPLIANCE TO DIETARY AND FLUID RESTRICTIONS Measuring c o m p l i a n c e t o the d i e t a r y and f l u i d a s p e c t s o f t h e h e m o d i a l y s i s regimen would i d e a l l y i n c l u d e measurement o f t h o s e p h y s i o l o g i c a l parameters used i n the c l i n i c a l a r e a t o e s t i m a t e t h e p a t i e n t ' s b a l a n c e o f p r o t e i n , sodium, p o t a s s i u m and f l u i d . However, t h e r e i s c o n s i d e r a b l e e v i d e n c e t h a t s e v e r a l o f t h e s e measurements a r e s u b j e c t t o i n f l u e n c e by s e v e r a l f a c t o r s u n r e l a t e d t o the p a t i e n t ' s d i e t a r y i n t a k e . Koushanpour s t a t e s t h a t t h e b l o o d u r e a n i t r o g e n l e v e l H a r r i n g t o n and B r e n e r , op. c i t . , p.41. Brundage, op. c i t . , pp.59-67. Hekelman and O s t e n d a r p , op. c i t . , pp.444-446. 19 can be found t o be e l e v a t e d by p r o t e i n c a t a b o l i s m , t h y r o i d hormone, c o n g e s t i v e h e a r t f a i l u r e , d e h y d r a t i o n , and s t r e s s , such as s u r g e r y , 21 i n f e c t i o n , b urns, and s e v e r e t o x i c i t y . Burnbeck s t a t e s t h a t the b l o o d urea n i t r o g e n l e v e l i n c h r o n i c h e m o d i a l y s i s p a t i e n t s w i l l r i s e i f the p a t i e n t i s i n a n e g a t i v e n i t r o g e n b a l a n c e . T h i s w i l l o c c u r i n s p i t e o f d e c r e a s e d p r o t e i n i n t a k e i f i n s u f f i c i e n t h i g h - q u a l i t y p r o t e i n i s consumed. Under t h e s e c o n d i t i o n s , a h i g h b l o o d urea n i t r o g e n l e v e l i n d i c a t e s d e s t r u c t i o n o f the body's p r o t e i n s t o r e s t o s u p p l y c a l o r i e s f o r e n e r g y , 22 t i s s u e r e p a i r , and maintenance. L e v i n s k y and Relman p o i n t out t h a t t h e p h y s i o l o g i c mechanisms t h a t r e g u l a t e sodium and water m e t a b o l i s m a r e c l o s e l y i n t e r r e l a t e d and n e i t h e r can be c o n s i d e r e d i n i s o l a t i o n . Plasma sodium c o n c e n t r a t i o n r e f l e c t s the r e l a t i v e p r o p o r t i o n s o f sodium and water, not the a b s o l u t e 23 amount o f sodium i n the body. While b l o o d p r e s s u r e tends t o r e f l e c t t h e p a t i e n t ' s sodium and f l u i d b a l a n c e , i t too can be i n f l u e n c e d by s e v e r a l f a c t o r s . , A c c o r d i n g t o V e r t e s , b l o o d p r e s s u r e i n c h r o n i c h e m o d i a l y s i s p a t i e n t s can be i n f l u e n c e d by s t r e s s and a n x i e t y , d r u g s , such as a n t i h y p e r t e n s i v e s , and 24 c e r t a i n p a t h o p h y s i o l o g i c a l s t a t e s such as r e n i n - d e p e n d e n t h y p e r t e n s i o n . F o r the p a t i e n t on d i a l y s i s , who i s u s u a l l y a n u r i c o r o l i g u r i c , f l u i d s i n g e s t e d between d i a l y s e s cannot be e x c r e t e d and t h e r e f o r e a r e r e t a i n e d i n the body u n t i l removed by u l t r a f i l t r a t i o n d u r i n g the next d i a l y s i s . Gutch and S t o n e r t h e r e f o r e conclude, t h a t f o r the p a t i e n t w i t h 21 E. Koushanpour, Renal P h y s i o l o g y : P r i n c i p l e s and F u n c t i o n s ( P h i l a d e l p h i a : W.B. Saunders Co., 1976), p.504. 22 L . I . Burnbeck, " C o n s e r v a t i v e Care o f P a t i e n t s With Renal F a i l u r e , " i n N u r s i n g and The Nephrology P a t i e n t , ed. L. S c h l o t t e r ( F l u s h i n g , New York: M e d i c a l E x a m i n a t i o n P u b l i s h i n g Co., 1973), p.41. 23 L e v i n s k y and Relman, op. c i t . , pp.835-836. 24 V e r t e s , op. c i t . p.125. 20 c h r o n i c r e n a l f a i l u r e on h e m o d i a l y s i s , changes i n body weight between 25 d i a l y s e s p r o v i d e s t h e b e s t i n d i c a t o r o f f l u i d b a l a n c e . N a t e l s o n and Nate!son s t a t e t h a t because p o t a s s i u m i s t h e major c a t i o n w i t h i n t h e c e l l , and a l m o s t a l l n a t u r a l f o o d s a r e composed o f c e l l s , p e o p l e who cannot e x c r e t e p o t a s s i u m a r e i n danger o f a c c u m u l a t i n g 26 d a n g e r o u s l y h i g h l e v e l s o f p o t a s s i u m i n t h e i r b l o o d . P o t a s s i u m i s l o s t i n small amounts i n the f e c e s and t h r o u g h the s k i n , but t h e major e x i t s i t e i s t h r o u g h the k i d n e y s , where e i g h t y t o n i n e t y p e r c e n t o f the 27 p o t a s s i u m i s e x c r e t e d . A l t h o u g h Hayes and Robinson have su g g e s t e d t h a t t h e r e i s e v i d e n c e o f an i n c r e a s e i n p o t a s s i u m c o n c e n t r a t i o n i n the f e c e s o f uremic i n d i v i d u a l s , which i s not a s s o c i a t e d w i t h o v e r t d i a r r h e a , 28 s t e a t o r r h e a or o b v i o u s a l t e r a t i o n i n t h e i n t e s t i n a l t r a n s i t t i m e , t h i s a c c o u n t s f o r a v e r y s m a l l p r o p o r t i o n o f t h e d a i l y i n g e s t i o n o f p o t a s s i u m and i s i n e f f e c t i v e i n c o n t r o l l i n g the h i g h serum p o t a s s i u m l e v e l s found i n p a t i e n t s w i t h c h r o n i c r e n a l f a i l u r e . As a r e s u l t , says Bernbeck, p o t a s s i u m l e v e l s r i s e i n t h e b l o o d o f i n d i v i d u a l s w i t h r e n a l f a i l u r e , o f t e n t o d a n g e r o u s l y h i g h p r o p o r t i o n s . T h i s i s augmented by the a c i d o s i s t h a t e x i s t s i n r e n a l f a i l u r e , as p o t a s s i u m tends t o move ou t o f the c e l l s i n exchange f o r hydrogen i o n s i n t h e p r e s e n c e o f 29 a c i d o s i s . Thus t h e e s t i m a t e o f t h e p a t i e n t ' s c o m p l i a n c e t o t h e p r o t e i n and sodium r e s t r i c t i o n s i s made by i n d i r e c t means, which have been shown t o 25 Gutch and S t o n e r , op. c i t . , p.150 26 S. N a t e l s o n and E.A. N a t e l s o n , P r i n c i p l e s o f A p p l i e d C l i n i c a l  C h e m i s t r y (New York: Plenum P r e s s , 1975). p.130. 2 7 I b i d , p.121. 28 C P . Hayes and R.R. Robinson, " F e c a l Potassium E x c r e t i o n i n P a t i e n t s on C h r o n i c I n t e r m i t t e n t H e m o d i a l y s i s , " T r a n s a c t i o n s o f the  American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, 11:244, 1965. 29 Bernbeck, l o c . c i t . 21 be i n f l u e n c e d by s e v e r a l f a c t o r s i n a d d i t i o n t o the p a t i e n t ' s d i e t a r y i n t a k e . In c o n t r a s t , weight g a i n s between d i a l y s e s and serum p o t a s s i u m l e v e l s t e n d t o r e f l e c t more a c c u r a t e l y t h e p a t i e n t ' s consumption o f f l u i d and h i s i n t a k e o f p o t a s s i u m r e s p e c t i v e l y . Because p o t a s s i u m i s found i n v i r t u a l l y a l l n a t u r a l f o o d s , the p r e - d i a l y s i s serum p o t a s s i u m l e v e l i s an i m p o r t a n t i n d i c a t o r o f the p a t i e n t ' s adherence t o h i s d i e t a r y r e s t r i c t i o n s . The l i t e r a t u r e s u p p o r t s the s e l e c t i o n o f t h e s e two v a r i a b l e s : between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s , as i n d i c a t o r s o f the p a t i e n t ' s c o m p l i a n c e t o f l u i d and p o t a s s i u m r e s t r i c t i o n s . A d d i t i o n a l s u p p o r t i s p r o v i d e d by p r e v i o u s r e s e a r c h o f d i e t a r y and f l u i d 30 31 c o m p l i a n c e i n h e m o d i a l y s i s p a t i e n t s by Chidoda and P i e r c e , both o f whom used between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s as dependent measures o f c o m p l i a n c e t o the regimen. While adherence t o the d i e t and f l u i d regimen i s a problem i n h e m o d i a l y s i s p o p u l a t i o n s , t h e s e p a t i e n t s a r e not a l o n e i n t h e i r i n a b i l i t y t o comply c o n s i s t e n t l y w i t h t h e i r m e d i c a l regimens. Compliance t o m e d i c a l regimens has r e c e i v e d much a t t e n t i o n from r e s e a r c h e r s , and some g e n e r a l p a t t e r n s and c o n c l u s i o n s a r e now emerging from t h i s f i e l d . In the next s e c t i o n , t h i s r e s e a r c h i s examined t o d e t e c t the major t r e n d s t h a t have been found t o i n f l u e n c e c o m p l i a n c e b e h a v i o r . o uS.M. Chidoda, "A D e s c r i p t i v e Study o f Compliance With M e d i c a l Regimen: D i a l y s i s and D i a b e t i c P a t i e n t s , " ( u n p u b l i s h e d M a s t e r ' s t h e s i s , McGi11 U n i v e r s i t y , 1976). ... 31 P.H. P i e r c e , " I n f l u e n c e o f a N u r s e - P a t i e n t R e l a t i o n s h i p Upon H e m o d i a l y s i s P a t i e n t s ' D e c i s i o n t o Adhere t o a D i e t as a Task o f Adapta-t i o n , " ( u n p u b l i s h e d M a s t e r ' s t h e s i s , Y a l e U n i v e r s i t y , 1975). 22 RESEARCH ON COMPLIANCE TO MEDICAL REGIMENS The c o m p l e x i t y o f c o m p l i a n c e b e h a v i o r and i t s d e t e r m i n a n t s i s r e f l e c t e d i n t h e volume o f l i t e r a t u r e on the s u b j e c t and the number o f f a c t o r s which have been i n v e s t i g a t e d . S a c k e t t and Haynes i d e n t i f i e d o v e r 150 i n d i v i d u a l f a c t o r s as p o s s i b l e d e t e r m i n a n t s o f c o m p l i a n c e i n the 32 more than two hundred a r t i c l e s on c o m p l i a n c e t h e y r e v i e w e d . There i s a l a c k o f u n i f o r m i t y among such s t u d i e s i n t h e o p e r a t i o n a l d e f i n i t i o n o f c o m p l i a n c e . Moreover, due t o a l a c k o f o b j e c t i v e and p r e c i s e measures o f p a t i e n t c o m p l i a n c e , a m u l t i t u d e o f methods have been used: p a t i e n t r e p o r t , p i l l and b o t t l e c o u n t s , r a t e o f r e f i l l o f p r e -s c r i p t i o n s , r e t u r n c l i n i c v i s i t s , d i r e c t o b s e r v a t i o n , p h y s i o l o g i c a l parameters such as w e i g h t and b l o o d p r e s s u r e , and b l o o d and u r i n e a s s a y s . Many o f t h e s e methods a r e n o t a b l y i n a c c u r a t e , says Marston; such as t h e 33 p a t i e n t ' s r e p o r t o f h i s c o m p l i a n c e . The a c c u r a c y w i t h which p a t i e n t c o m p l i a n c e can be e s t i m a t e d i s somewhat b e t t e r i n h e m o d i a l y s i s p a t i e n t s . Kaplan De-Nour and Czaczkes p o i n t out t h a t i n t h e s e p a t i e n t s , a c c u r a t e and o b j e c t i v e d a t a i n t h e form 34 o f weight changes and b l o o d c h e m i s t r y v a l u e s a r e e a s i l y o b t a i n e d . However, t h i s does n o t h o l d t r u e f o r t h e m a j o r i t y o f s t u d i e s o f c o m p l i a n c e , and thus i t i s d i f f i c u l t t o compare d i f f e r e n t s t u d i e s t o make g e n e r a l i z a t i o n s about t h e f a c t o r s which i n f l u e n c e c o m p l i a n c e b e h a v i o r . 32 R.B. Haynes and D.L. S a c k e t t , i n c o l l a b o r a t i o n w i t h D.W. T a y l o r , B.C. H a c k e t t , E. L u t e r b a c h , and J.R. C l o a k , "An A n n o t a t e d B i b l i o g r a p h y ; I n c l u d i n g Notes on M e t h o d o l o g i c S t a n d a r d s f o r Compliance R e s e a r c h , " i n Compliance With T h e r a p e u t i c Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), pp.193-287. 33 M.V. M a r s t o n , "Compliance With M e d i c a l Regimens: A Review o f the L i t e r a t u r e , " N u r s i n g R e s e a r c h , 19:313-314, J u l y - A u g u s t , 1970. 34 A. Kaplan De-Nour and J.W. C z a c z k e s , " P e r s o n a l i t y F a c t o r s i n C h r o n i c H e m o d i a l y s i s P a t i e n t s C a u s i n g Noncompliance With M e d i c a l Regimen," Psyc h o s o m a t i c M e d i c i n e , 34:333, J u l y - A u g u s t , 1972. 23 A few s e r i o u s i n v e s t i g a t o r s have p r e p a r e d e x c e l l e n t r e v i e w s o f the l i t e r a t u r e on co m p l i a n c e which r e v e a l some major t r e n d s t h a t appear t o h o l d t r u e from s t u d y t o st u d y and p r o v i d e an o v e r v i e w o f t h o s e v a r i a b l e s which i n f l u e n c e c o m p l i a n c e b e h a v i o r . The f o l l o w i n g d i s c u s s i o n p r e s e n t s a summary o f t h e s e major f i n d i n g s , w i t h a s p e c i a l emphasis on s t u d i e s c o n d u c t e d i n h e m o d i a l y s i s s e t t i n g s . F o l l o w i n g t h i s , some o f the t h e o r e t i c a l frameworks on which i n t e r v e n t i o n s t o e f f e c t c o m p l i a n c e have been based a r e d i s c u s s e d b r i e f l y . A c c o r d i n g t o Parsons'; S i c k Role C o n s t r u c t , an i n d i v i d u a l who becomes i l l assumes the r i g h t s and o b l i g a t i o n s o f t h e s i c k r o l e . He i s exempt from h i s usual r o l e o b l i g a t i o n s and assumes no blame f o r h i s c o n d i t i o n , but a t the same time i s e x p e c t e d t o seek competent m e d i c a l s u p e r v i s i o n and t o c o o p e r a t e w i t h h i s p h y s i c i a n i n o r d e r t o e x p e d i t e 35 h i s r e c o v e r y . The s i t u a t i o n d e s c r i b e d by Parsons i s c l e a r l y an a c u t e , r e v e r s i b l e e p i s o d e o f i l l n e s s from which t h e i n d i v i d u a l r e c o v e r s . However, P e t r o n i ' s s t u d y o f t h e i n f l u e n c e o f such v a r i a b l e s as age, sex, and c h r o n i c i t y on p a t i e n t s ' p e r c e i v e d l e g i t i m a c y o f the s i c k r o l e , r e v e a l e d t h a t t h e assumption o f t h e s i c k r o l e i s ju d g e d t o be more l e g i t i m a t e f o r persons w i t h c h r o n i c i l l n e s s than t h o s e w i t h a c u t e i l l n e s s Thus i t may be assumed t h a t even f o r c h r o n i c a l l y i l l persons such as h e m o d i a l y s i s p a t i e n t s t h e r e i s a no r m a t i v e e x p e c t a t i o n t h a t p a t i e n t s w i l l c o o p e r a t e w i t h t h e m e d i c a l a u t h o r i t y t h e y seek o u t . Yet. the a c t u a l T. P a r s o n s , The S o c i a l S y s t e m , ( C h i c a g o : The Free P r e s s , 1951). 36 F.A. P e t r o n i , "The I n f l u e n c e o f Age, Sex and C h r o n i c i t y i n P e r c e i v e d L e g i t i m a c y o f the S i c k R o l e , " S o c i o l o g i c a l and S o c i a l R e s e a r c h , 53:180-193, J a n u a r y , 1969. ~ ~ 24 degree o f c o o p e r a t i o n f a l l s f a r s h o r t o f t h i s e x p e c t a t i o n . P u b l i s h e d r e p o r t s o f c o m p l i a n c e b e h a v i o r i n d i c a t e t h a t from f o u r p e r c e n t t o one 37 hundred p e r c e n t o f p a t i e n t s f a i l t o f o l l o w t h e i r m e d i c a l regimens. Davis e s t i m a t e s t h a t f o r any g i v e n t r e a t m e n t group, a t l e a s t a t h i r d 38 o f t he p a t i e n t s w i l l f a i l t o comply w i t h t h e i r d o c t o r ' s recommendations. R e l i a b l e f i g u r e s f o r t h e degree o f p a t i e n t non-compliance a r e d i f f i c u l t t o o b t a i n f o r h e m o d i a l y s i s p a t i e n t s . Kaplan De-Nour and Czaczkes have r e p o r t e d o n l y f a i r t o poor c o m p l i a n c e t o t h e d i e t i n f o r t y o u t o f a group o f f i f t y - t w o h e m o d i a l y s i s p a t i e n t s t h e y s t u d i e d , i n d i c a t i n g 39 a non-compliance r a t e o f a l m o s t e i g h t y p e r c e n t . In d i s c u s s i n g the r e s u l t s o f a l a t e r s t u d y o f f a c t o r s c o n t r i b u t i n g t o non-compliance t o the d i e t i n h e m o d i a l y s i s p a t i e n t s , t h e y r e p o r t , "On t h e whole, adherence t o the d i e t seemed t o be r a t h e r poor; about h a l f o f t h e p a t i e n t s c o u l d be 40 r e g a r d e d as a b u s e r s o f t h i s p a r t o f the m e d i c a l regimen." In a s u r v e y o f 201 h e m o d i a l y s i s c e n t e r s i n the U n i t e d S t a t e s , c o n s i s t i n g o f o v e r t h r e e thousand h e m o d i a l y s i s p a t i e n t s , Abram, Moore and W e s t e r v e l t r e p o r t e d 117 deaths as a r e s u l t o f non-adherence t o t h e t r e a t m e n t regimen i n such ways as the " . . . i n g e s t i o n o f l a r g e amounts o f f l u i d s and foods f o r b i d d e n by the d i a l y s i s r e g i m e n . " 4 1 Thus i t appears t h a t the problem o f non-adherence t o the d i e t and f l u i d r e s t r i c t i o n s i n h e m o d i a l y s i s p o p u l a t i o n s i s s i g n i f i c a n t . 37 Marston, op. c i t . , p.312. 38 M.S. D a v i s , " V a r i a t i o n s i n P a t i e n t s ' Compliance With D o c t o r s ' O r d e r s : A n a l y s i s o f Congruence Between Survey Responses and R e s u l t s o f E m p i r i c a l I n v e s t i g a t i o n s , " J o u r n a l o f M e d i c a l E d u c a t i o n , 41:1039, 1969. 39 A. Kaplan De-Nour and J.W. C z a c z k e s , " P e r s o n a l i t y and Adjustment to C h r o n i c H e m o d i a l y s i s , " i n L i v i n g o r Dying: A d a p t a t i o n t o H e m o d i a l y s i s , ed., N.B. Levy ( S p r i n g f i e l d , 111., C h a r l e s C. Thomas, Pub., 1974), p. 122. 40 Kaplan De-Nour and C z a c z k e s , "Noncompliance," p.333. 41 H.S. Abram, G.L. Moore and F.B. W e s t e r v e l t , " S u i c i d a l B e h a v i o r i n C h r o n i c D i a l y s i s P a t i e n t s , " American J o u r n a l o f P s y c h i a t r y , 127:119-124, March, 1971. 25 The f i n d i n g s o f the l i t e r a t u r e on c o m p l i a n c e t o med i c a l regimens w i l l be summarized under the f o l l o w i n g h e a d i n g s : demographic f e a t u r e s o f p a t i e n t s , f e a t u r e s o f the d i s e a s e , f e a t u r e s o f t h e t h e r a p e u t i c regimen, f e a t u r e s o f the t h e r a p e u t i c s o u r c e , f e a t u r e s o f t h e p a t i e n t - t h e r a p i s t i n t e r a c t i o n , and s o c i o b e h a v i o r a l f e a t u r e s o f p a t i e n t s . DEMOGRAPHIC FEATURES OF PATIENTS M a r s t o n , i n her r e v i e w o f t h e l i t e r a t u r e on compl i a n c e d i s c u s s e s the f i n d i n g s o f more than e i g h t y s t u d i e s . Research i n t o t h e e f f e c t s o f the demographic c h a r a c t e r i s t i c s o f p a t i e n t s on c o m p l i a n c e t o t h e r a p e u t i c regimens i s c o n f l i c t i n g ; a l t h o u g h some s t u d i e s s u g g e s t t h a t demographic v a r i a b l e s may be p r e d i c t i v e o f c o m p l i a n c e , t he e v i d e n c e from s e v e r a l s t u d i e s i s c o n t r a d i c t o r y . Marston c o n c l u d e s t h a t , "Demographic v a r i a b l e s such as age, sex, s o c i o e c o n o m i c s t a t u s , e d u c a t i o n , r e l i g i o n , m a r i t a l s t a t u s and r a c e , when examined a p a r t from o t h e r v a r i a b l e s have 42 r a r e l y been p r e d i c t i v e o f c o m p l i a n c e w i t h m e d i c a l regimens." T h i s c o n c l u s i o n i s s u p p o r t e d by D a v i s , who found t h a t demographic v a r i a b l e s were not p r e d i c t i v e o f c o m p l i a n t b e h a v i o r i n a group o f 156 43 o u t p a t i e n t s he s t u d i e d . In h i s e x t e n s i v e r e v i e w o f t h e l i t e r a t u r e on co m p l i a n c e , Haynes c o n c l u d e s t h a t t he e f f e c t o f demographic f a c t o r s would appear t o be much g r e a t e r upon a c c e s s t o h e a l t h s e r v i c e s than upon 44 compli a n c e w i t h t h e r a p y among p a t i e n t s who a r e a l r e a d y i n the system. M a r s t o n , op. c i t . , p.317. 43 M.S. D a v i s , " V a r i a t i o n i n P a t i e n t s ' Compliance With D o c t o r s ' O r d e r s : M e d i c a l P r a c t i c e and D o c t o r - P a t i e n t I n t e r a c t i o n , " P s y c h i a t r y  i n M e d i c i n e , 2:42, 1971. R.B. Haynes, "A C r i t i c a l Review o f t h e 'Determinants' o f P a t i e n t Compliance With T h e r a p e u t i c Regimens," i n Compliance With T h e r a p e u t i c  Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), p.30. 26 FEATURES OF THE DISEASE S e v e r i t y o f the i l l n e s s b e i n g t r e a t e d may i n f l u e n c e whether the i n d i v i d u a l seeks and f o l l o w s m e d i c a l a d v i c e . Watts found t h a t the more s e v e r e the c o n d i t i o n o r symptoms, t h e more l i k e l y t he i n d i v i d u a l was t o 45 seek and f o l l o w m e d i c a l recommendations. However, the r e s u l t s o f a s t u d y by E l l i n g have shown t h e o p p o s i t e t e n d e n c y : t h e more s e v e r e t h e 46 i l l n e s s , t he l e s s l i k e l y were p a t i e n t s t o f o l l o w the d o c t o r s o r d e r s . Haynes reviewed more than f i f t y s t u d i e s i n v e s t i g a t i n g t h e e f f e c t s o f the d i s e a s e on p a t i e n t c o m p l i a n c e t o the t h e r a p e u t i c regimen, c o v e r i n g such a r e a s a s : d i a g n o s i s , s e v e r i t y o f t h e i l l n e s s , d u r a t i o n o f t h e i l l n e s s , e f f e c t s o f p r e v i o u s bouts o f t h e d i s e a s e , t h e r e c e n c y o f t h e l a s t a t t a c k , e f f e c t s o f p r e v i o u s t h e r a p y , the degree o f d i s a b i l i t y and the symptoms o f the d i s e a s e . He c o n c l u d e d t h a t , e x c e p t f o r a c o n s i s t e n t f i n d i n g t h a t a p s y c h i a t r i c d i a g n o s i s i s a s s o c i a t e d w i t h non-compliance, one c o u l d not i d e n t i f y the n o n - c o m p l i e r by h i s d i a g n o s i s , nor by t h e 47 f e a t u r e s o f h i s d i s e a s e . FEATURES OF THE THERAPEUTIC REGIMEN Dav i s p o i n t s out t h a t a m e d i c a l regimen i s a composite o f recommendations and t h a t p a t i e n t s may comply w i t h a l l , some, o r none o f 48 the a d v i c e . S t r a u s s s t a t e s t h a t regimens a r e not j u s t a u t o m a t i c a l l y a c c e p t e d . They a r e judged on the b a s i s o f e f f i c i e n c y , l e g i t i m a c y , o r both. A l s o , t h e y a r e judged on s o c i a l r a t h e r than m e d i c a l bases. He i d e n t i f i e d the c o n d i t i o n s t h a t d e t e r m i n e whether o r not p a t i e n t s w i l l 4 5 D.D. Watts, " F a c t o r s R e l a t e d t o t h e A c c e p t a n c e o f Modern M e d i c i n e " American J o u r n a l o f P u b l i c H e a l t h , 56:1205-1212, August, 1966. 46 R. E l l i n g e t a l . , " P a t i e n t P a r t i c i p a t i o n i n a P e d i a t r i c Program," J o u r n a l o f H e a l t h and Human B e h a v i o r , 1:183-191, F a l l , 1960. 47 Haynes, op. c i t . , p.30. 48 D a v i s , "Survey Responses," p.1044. adhere t o a p r e s c r i b e d regimen. Compliance, says S t r a u s s , w i l l be more l i k e l y i f : a) t h e r e i s an i n i t i a l o r c o n t i n u i n g t r u s t i n t h e p h y s i c i a n o r whoever e l s e p r e s c r i b e s the regimen, b) no r i v a l s u p e r c e d e s the p h y s i c i a n i n h i s l e g i t i m a t i n g , c) t h e r e i s e v i d e n c e t h a t the regimen works e i t h e r t o c o n t r o l symptoms o r the d i s e a s e i t s e l f , o r b o t h , d) no d i s -t r e s s i n g , f r i g h t e n i n g s i d e e f f e c t s appear, e) the s i d e e f f e c t s a r e o u t -weighed by symptom r e l i e f o r by s u f f i c i e n t f e a r o f t h e d i s e a s e i t s e l f , f ) t h e r e i s a r e l a t i v e n o n i n t e r f e r e n c e w i t h i m p o r t a n t d a i l y a c t i v i t i e s , e i t h e r o f t h e p a t i e n t o r o f the p e o p l e around him, g) t h e regimen's p e r c e i v e d good e f f e c t s a r e not outweighed by a n e g a t i v e impact on the 49 p a t i e n t s sense o f i d e n t i t y . The v e r y c h a r a c t e r i s t i c s o f t h e regimen, says S t r a u s s , c o n s t i t u t e i m p o r t a n t c o n t r i b u t i n g c o n d i t i o n s f o r a d h e r i n g t o , r e l a x i n g , o r even r e j e c t i n g t he p r e s c r i b e d regimen a l t o g e t h e r . Thus, the ease w i t h which the regimen i s l e a r n e d , t h e amount o f t i m e , expense and energy i t t a k e s , and the d i s c o m f o r t o r s i d e e f f e c t s t h a t o c c u r w i l l i n f l u e n c e t h e degree t o which the p a t i e n t w i l l adhere t o i t . Regimens which c o n t r i b u t e t o the p a t i e n t ' s s o c i a l i s o l a t i o n o r cause him t o be s t i g m a t i z e d by o t h e r s a r e 50 u n l i k e l y t o be f o l l o w e d . Haynes r e p o r t s t h a t a r e v i e w o f t h e l i t e r a t u r e i n d i c a t e s t h a t one o f the few f e a t u r e s o f the regimen about which t h e r e a r e no d i s s e n t i n g r e p o r t s c o n c e r n s the degree o f b e h a v i o r a l change t h e regimen r e q u i r e s o f the p a t i e n t . P a s s i v e c o o p e r a t i o n i s most e a s i l y a t t a i n e d , and a c t i v e co-o p e r a t i o n i s l e s s e a s i l y a c h i e v e d . A s t e e p g r a d i e n t has been demonstrated A.L. S t r a u s s , C h r o n i c I l l n e s s and t h e Q u a ! i t y o f L i f e ( S t . L o u i s The C.V. Mosby Co., 1975), pp.21-22. 5 0 I b i d , p.27. 28 i n which the c o m p l i a n c e e x h i b i t e d by p a t i e n t s who must a c q u i r e new h a b i t s , such as t a k i n g m e d i c a t i o n s ; is.much g r e a t e r than t h a t e x h i b i t e d by t h o s e who must a l t e r o l d b e h a v i o r s , such as d i e t a r y o r v o c a t i o n a l h a b i t s , which 51 exceeds i n t u r n , t h a t o f t h o s e who must break p e r s o n a l h a b i t s . These c o n c l u s i o n s a r e a l s o s u p p o r t e d by D a v i s , who found t h a t the g r e a t e r the e f f e c t o f t h e i l l n e s s and i t s t r e a t m e n t i n i n t e r f e r i n g w i t h the a c t i v i t i e s o f d a i l y l i v i n g , t h e l e s s l i k e l y t he p a t i e n t was t o 52 f o l l o w the d o c t o r ' s a d v i c e . Research s u g g e s t s t h a t an i n v e r s e r e l a t i o n s h i p e x i s t s between co m p l i a n c e and t h e d i f f i c u l t y o f t h e regimen. D a v i s and E i c h h o r n found t h a t when more than one recommendation was made, p a t i e n t s were u n l i k e l y 53 t o f o l l o w a l l o f them. A l s o , F r a n c i s found t h a t c o m p l i a n c e was lower f o r p a t i e n t s f o r whom both drugs and o t h e r recommendations were made than 54 f o r t h o s e w i t h s i m p l e r regimens. Johnson has s t a t e d t h a t recommendations 55 r e g a r d i n g d i e t show t h e g r e a t e s t d e c r e a s e i n c o m p l i a n c e o v e r time. Haynes s u g g e s t s t h a t the degree o f b e h a v i o r change r e q u i r e d i n a regimen may a l s o e x p l a i n the d e c l i n e i n c o m p l i a n c e t h a t accompanies i n c r e a s i n g l y c o m p l i c a t e d regimens. He r e p o r t s t h a t t h e r e i s a r e l a t i o n -s h i p between the l e n g t h o f time t h a t p a t i e n t s a r e under t r e a t m e n t and 51 Haynes, op. c i t . , p.31. CO M.S. D a v i s , " P h y s i o l o g i c , P s y c h o l o g i c a l and Demographic F a c t o r s i n P a t i e n t Compliance With D o c t o r s ' O r d e r s , " M e d i c a l Care, 6:121, 1968. CO M.S. D a v i s and R.L. E i c h h o r n , "Compliance With M e d i c a l Regimens: A Panel Study," J o u r n a l o f H e a l t h and Human B e h a v i o r , 4:247, W i n t e r , 1963. 5 4 V . F r a n c i s e t a l . , "Gaps i n D o c t o r - P a t i e n t Communication: P a t i e n t s ' Response t o M e d i c a l A d v i c e , " New England J o u r n a l o f M e d i c i n e , 280:539, March 6, 1969. 55 W.L. Johnson, " C o n f o r m i t y t o M e d i c a l Recommendations i n C o r o n a r y H e a r t D i s e a s e " (paper p r e s e n t e d a t the American S o c i o l o g i c a l A s s o c i a t i o n m e e t i n g , September 2, 1965, C h i c a g o , 111.). 29 56 t h e i r compliance-,with c o m p l i a n c e d e c r e a s i n g o v e r t i m e . In summary, the r e s e a r c h i n d i c a t e s t h a t p a t i e n t s who a r e r e q u i r e d t o f o l l o w a d i f f i c u l t and complex regimen t h a t n e c e s s i t a t e s a major change i n p e r s o n a l h a b i t s , and must f o l l o w t h i s regimen f o r l o n g p e r i o d s a r e u n l i k e l y t o a c h i e v e a h i g h degree o f c o m p l i a n c e . T h i s d e s c r i b e s t h e type o f regimen t h a t h e m o d i a l y s i s p a t i e n t s a r e p r e s c r i b e d , and s u g g e s t s p o s s i b l e e x p l a n a t i o n s f o r t h e degree o f non-compliance o b s e r v e d i n t h e s e p a t i e n t s . FEATURES OF THE THERAPEUTIC SOURCE Haynes r e p o r t s the f i n d i n g s o f s e v e r a l s t u d i e s which i n d i c a t e t h a t h e a l t h p r o f e s s i o n a l s a r e u n a b l e t o d i s t i n g u i s h between n o n - c o m p l i e r s and c o m p l i e r s among t h e i r own p a t i e n t s ; t e n d i n g t o o v e r e s t i m a t e t h e degree 57 o f c o m p l i a n c e a c h i e v e d . In h e m o d i a l y s i s p a t i e n t s , where immediate and r e l a t i v e l y o b j e c t i v e e v i d e n c e o f non-compliance i s more r e a d i l y a v a i l a b l e from the p a t i e n t s ' w e i g h t g a i n s , b l o o d p r e s s u r e s and p r e - d i a l y s i s b l o o d c h e m i s t r i e s , t h i s may not be the c a s e . P i e r c e r e p o r t s t h a t s t a f f members tended t o under-e s t i m a t e t h e c o m p l i a n c e o f the h e m o d i a l y s i s p a t i e n t s i n her s t u d y . ^ Kaplan De-Nour and Czaczkes r e p o r t t h a t t h e y s u c c e s s f u l l y p r e d i c t e d h e m o d i a l y s i s p a t i e n t s ' d i e t a r y c o m p l i a n c e a f t e r t w e l v e months 5' o f d i a l y s i s from a p e r s o n a l i t y assessment made b e f o r e t h e y began d i a l y s i s . 56 Haynes, op. c i t . , p.32. 57 I b i d , p.33. 58 P i e r c e , op. c i t . , p.87. 59 Kaplan De-Nour and C z a c z k e s , " P e r s o n a l i t y and Adjustment," p. 122. 30 FEATURES OF THE PATIENT-THERAPIST INTERACTION Haynes r e p o r t s t h a t a l l s t u d i e s on the r e l a t i o n s h i p between the degree o f s u p e r v i s i o n and c o m p l i a n c e have found a p o s i t i v e a s s o c i a t i o n . Thus, h o s p i t a l i z e d p a t i e n t s a r e more c o m p l i a n t than day p a t i e n t s , who a r e more c o m p l i a n t than o u t - p a t i e n t s . F u r t h e r m o r e , i n c r e a s e s i n com-." p l i a n c e have been shown when the f r e q u e n c y o f o u t - p a t i e n t v i s i t s i s i n c r e a s e d , when home v i s i t s a r e added, when t h e p a t i e n t ' s f a m i l y i s r e c r u i t e d t o a s s i s t i n s u p e r v i s i o n , when o b j e c t i v e e v i d e n c e o f non-c o m p l i a n c e i s f e d back t o the p a t i e n t , and when c o n t i n u i t y o f c a r e i s p r o v i d e d . The second c o n s i s t e n t f i n d i n g i s t h a t t h e p a t i e n t ' s s t a t e d l e v e l o f s a t i s f a c t i o n w i t h the t h e r a p i s t and c l i n i c i s c o r r e l a t e d w i t h c o m p l i a n c e , and t h a t c o m p l i a n c e i s p o s i t i v e l y a s s o c i a t e d w i t h t h e p a t i e n t ' s 60 c o n c l u s i o n s t h a t h i s e x p e c t a t i o n s have been met by h i s t h e r a p i s t . The e f f e c t s o f d o c t o r - p a t i e n t communication on c o m p l i a n c e was i n v e s t i g a t e d by D a v i s , u s i n g B a l e ' s I n t e r a c t i o n P r o c e s s A n a l y s i s . He found t h a t a l l t y p e s o f d o c t o r - p a t i e n t communication were a s s o c i a t e d w i t h non-compliance e x c e p t : s o l i d a r y r e l a t i o n s h i p , e v a l u a t i v e congruence, and t e n s i o n - r e l e a s e ; and o f t h e s e , o n l y t e n s i o n - r e l e a s e was s i g n i f i c a n t l y c o r r e l a t e d w i t h p a t i e n t c o m p l i a n c e . ^ No s t u d y c o u l d be found which i n v e s t i g a t e d the e f f e c t s o f the c a r e - g i v e r - p a t i e n t r e l a t i o n s h i p on h e m o d i a l y s i s p a t i e n t s ' adherence t o t h e i r d i e t and f l u i d r e s t r i c t i o n s , nor o f t h e e f f e c t s o f s t r u c t u r i n g the i n t e r a c t i o n t o p r o v i d e f o r c o n t i n u i t y o f c a r e o r home v i s i t s . Haynes, op. c i t . , p.35. 61 M.S. D a v i s , " V a r i a t i o n s i n P a t i e n t s ' Compliance With D o c t o r s ' A d v i c e : An E m p i r i c a l A n a l y s i s o f P a t t e r n s o f Communication," American  J o u r n a l o f P u b l i c H e a l t h , 58:283, F e b r u a r y , 1968. 31 SOCIOBEHAVIORAL FEATURES !0F PATIENTS § I n v e s t i g a t i o n s i n t o t h e m e d i a t i n g p s y c h o l o g i c a l v a r i a b l e s have y i e l d e d l i t t l e toward the u n d e r s t a n d i n g o f c o m p l i a n c e . Marston c a u t i o n s a g a i n s t t h e assumption t h a t p s y c h o l o g i c a l t e s t s , which have been v a l i d a t e d on groups o f u n i v e r s i t y s t u d e n t s w i l l be v a l i d f o r groups o f c h r o n i c a l l y .,, 62 i l l p e r s o n s . A d j e c t i v e c h e c k - l i s t s have been used i n some s t u d i e s t o d e s c r i b e t h e c h a r a c t e r i s t i c s o f c omplying and non-complying p a t i e n t s . D a v i s found t h a t o u t p a t i e n t s who were d e s c r i b e d by t h e i r d o c t o r s as r e s p o n s i v e , co-o p e r a t i v e , g r a t e f u l , a r t i c u l a t e , i n t e l l i g e n t , and formal were more l i k e l y t o comply w i t h t h e d o c t o r ' s recommendations than were t h o s e d e s c r i b e d as a u t h o r i t a r i a n , demanding, o v e r b e a r i n g , and o b s t r u c t i v e ; but t h e r e was no s i g n i f i c a n t c o r r e l a t i o n between d e p e n d e n t - s u b m i s s i v e r a t i n g s and c o m p l i a n c e . ^ Research by J a n i s and o t h e r s i n t o t h e use o f f e a r communications has i n d i c a t e d t h a t , when accompanied by p r a c t i c a l i n s t r u c t i o n s f o r r e d u c i n g o r e l i m i n a t i n g t h e t h r e a t , f e a r communications a r e e f f e c t i v e i n m o t i v a t i n g p e o p l e t o u n d e r t a k e d i a g n o s t i c and p r e v e n t i v e h e a l t h measures. However, the r e l a t i o n s h i p between f e a r a r o u s a l and w i l l i n g n e s s t o f o l l o w the s u g g e s t e d t h e r a p y appears t o be c u r v i l i n e a r , and when t h e l e v e l o f f e a r a r o u s a l i s v e r y h i g h , the i n d i v i d u a l i s l e s s l i k e l y t o remember o r f o l l o w the s p e c i f i c measures t o a v o i d the t h r e a t . ^ "'"Marston, op. c i t . , p.321. 6 3 D a v i s , " P h y s i o l o g i c , " p.121. 64 I.L. J a n i s and S. F e s h b a c k , " E f f e c t s o f F e a r - A r o u s i n g Communica-t i o n s , " Jo_jrn_n__)_^ 48:78-92, 1953; see a l s o I.L. J a n i s and R.F. T e r w i l l i g e r , "An E x p e r i m e n t a l Study o f P s y c h o l o g i c a l R e s i s t a n c e t o F e a r - A r o u s i n g Communications," J o u r n a l o f Abnormal S o c i a l  P s y c h o l o g y , 65:403-410, 1962. 32 Sw i n e h a r t su g g e s t e d t h a t messages t h a t a r e r e p e a t e d t o p . . o f t e n can produce h o s t i l i t y toward the communicator, g r e a t e r r i g i d i t y i n a t t i t u d e s and f o r g e t t i n g o r d i s t o r t i o n o f p r e v i o u s l y r e c e i v e d i n f o r m a t i o n . 65 T h i s i s e s p e c i a l l y t r u e i f the message i s f e a r - p r o d u c i n g . T h u s . f r e q u e n t r e p e t i t i o n o f t h r e a t e n i n g i n f o r m a t i o n by nurses t o h e m o d i a l y s i s p a t i e n t s i n an attempt t o promote comp l i a n c e i s i n e f f e c t i v e and moreover, may produce h o s t i l i t y toward the s t a f f by t h e p a t i e n t s and i n t e r f e r e w i t h the l e a r n i n g o f the v e r y i n f o r m a t i o n the s t a f f seeks t o impart. Marston c o n c l u d e s t h a t the l i t e r a t u r e on c o m p l i a n c e t o med i c a l regimens s u p p o r t s t he f a c t t h a t knowledge a l o n e c o n c e r n i n g t h e i l l n e s s and i t s t r e a t m e n t has not p r o v i d e d s u f f i c i e n t m o t i v a t i o n f o r p a t i e n t s t o 66 f o l l o w t h e i r regimens. T h i s c o n c l u s i o n r e c e i v e s s u p p o r t from t he f r e q u e n t o b s e r v a t i o n made i n d i a l y s i s s e t t i n g s t h a t p r o v i d i n g t h e p a t i e n t w i t h i n f o r m a t i o n c o n c e r n i n g t he d i e t and f l u i d r e s t r i c t i o n s does not guarantee t h a t t he p a t i e n t w i l l a c t u a l l y adhere t o t h e s e r e s t r i c t i o n s . Haynes r e p o r t s t h a t t he i n f l u e n c e o f t h e f a m i l y appears t o be c o n s i d e r a b l e i n s t u d i e s o f c o m p l i a n c e . Compliance i s h i g h e r among p a t i e n t s w i t h i n t a c t , " s u p p o r t i v e " f a m i l i e s and lower among t h o s e from 67 u n s t a b l e f a m i l i e s . A t t i t u d e s toward work have been r e l a t e d t o c o m p l i a n c e w i t h m e d i c a l regimens. G o l d s t e i n and E i c h h o r n found t h a t i n g e n e r a l , h i g h work-o r i e n t e d i n d i v i d u a l s a r e l i k e l y t o r e p o r t non-compliance and low work-o r i e n t e d i n d i v i d u a l s r e p o r t a hi g h degree o f co m p l i a n c e w i t h d o c t o r s ' R. S w i n e h a r t , Seek W i s e l y to P r e v e n t , ed., J . W a k e f i e l d (London: Her M a j e s t y ' s S t a t i o n e r y O f f i c e , 1973), p.172. 6 6 M a r s t o n , op. c i t . , pp.320-321. 67 Haynes, op. c i t . , p.36. 33 recommendations i n t h e i r s t u d y o f a group o f c a r d i a c p a t i e n t s who were CO a d v i s e d t o d e c r e a s e t h e i r work l o a d s . O t h e r c h a r a c t e r i s t i c s t h a t were found t o p r e d i c t both p r e s e n t and f u t u r e c o m p l i a n c e a c c o r d i n g t o Haynes' r e v i e w o f the l i t e r a t u r e , i n c l u d e a h i s t o r y o f c o m p l i a n c e w i t h a p r e v i o u s regimen, and c o m p l i a n c e w i t h one 69 o r more a s p e c t s o f t h e p r e s e n t regimen the p a t i e n t i s f o l l o w i n g . The H e a l t h B e l i e f Model f o r m u l a t e d by Rosenstock and o t h e r s 7 0 r e c e i v e s s u p p o r t from t h e l i t e r a t u r e f o r i t s p r e d i c t i v e v a l u e i n com-p l i a n c e s t u d i e s . The model makes p r e d i c t i o n s o f an i n d i v i d u a l ' s c o m p l i a n c e b e h a v i o r from h i s a t t i t u d e s toward i l l n e s s , h i s b e l i e f i n p e r s o n a l s u s c e p t i b i l i t y t o i l l n e s s , h i s p e r c e i v e d s e r i o u s n e s s o f the consequences, and h i s b e l i e f t h a t some c o u r s e o f a c t i o n i s a v a i l a b l e t o him t o a v o i d t h e s e consequences. Becker, i n h i s summary o f the r e s e a r c h i n t h e use o f the model, found s u p p o r t f o r t h e f o l l o w i n g : i n d i v i d u a l s w i t h a n e g a t i v e a t t i t u d e toward i l l n e s s a r e more w i l l i n g t o f o l l o w m e d i c a l a d v i c e i n o r d e r t o a v o i d s e r i o u s consequences, and t h o s e who r e g a r d the d i s e a s e as s e r i o u s , and t h a t t h e y a r e p e r s o n a l l y s u s c e p t i b l e , and t o a l e s s e r e x t e n t , t h a t t h e r e i s an a v a i l a b l e , e f f e c t i v e t h e r a p y t o a v o i d the t h r e a t , a r e more w i l l i n g t o comply w i t h m e d i c a l r e c o m m e n d a t i o n s . 7 1 In summary, the e v i d e n c e from s t u d i e s o f t h e r e l a t i o n s h i p o f v a r i o u s s o c i o b e h a v i o r a l p a t i e n t c h a r a c t e r i s t i c s t o c o m p l i a n c e s u p p o r t s B. G o l d s t e i n and R.L. E i c h h o r n , "The Changing P r o t e s t a n t E t h i c : R u r a l P a t t e r n s i n H e a l t h , Work and L e i s u r e , " American S o c i o ! o g i c Review, 26:557-565, August, 1961. 69 Haynes, op. c i t . , p.36. 7 ° I . M . Ros e n s t o c k , "Why People Use H e a l t h S e r v i c e s , " M i l bank  Memorial Fund Q u a r t e r l y , 44:94-124, J u l y , 1966. 7^M.H. Becker, " S o c i o b e h a v i o r a l D e t e r m i n a n t s o f Compliance," i n Compliance With M e d i c a l Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), p.41. 34 the f o l l o w i n g c o n c l u s i o n s : f i r s t , t h e H e a l t h B e l i e f Model appears t o be o f p r e d i c t i v e v a l u e ; s e c o nd, a gap e x i s t s between t h e p a t i e n t ' s know-l e d g e o f h i s d i s e a s e and t h e r a p y and h i s c o m p l i a n c e w i t h t h a t t h e r a p y ; t h i r d , c o m p l i a n c e w i t h one a s p e c t o f the regimen f a v o u r s c o m p l i a n c e w i t h o t h e r a s p e c t s ; and f i n a l l y , t h e s t a b i l i t y and s u p p o r t o f t h e p a t i e n t ' s f a m i l y a r e s t r o n g l y c o r r e l a t e d w i t h h i s o r her c o m p l i a n c e . Haynes' r e v i e w o f 185 s t u d i e s on c o m p l i a n c e s u g g e s t s ,that .the f o l l o w i n g c h a r a c t e r i s t i c s a r e a s s o c i a t e d w i t h non-compliance t o me d i c a l regimens: p s y c h i a t r i c d i a g n o s i s ; regimens which a r e complex, i n v o l v e a g r e a t degree o f b e h a v i o r a l change, and a r e o f l o n g d u r a t i o n ; i n e f f i c i e n t and i n c o n v e n i e n t c l i n i c s ; i n a d e q u a t e s u p e r v i s i o n ; p a t i e n t d i s s a t i s f a c t i o n w i t h t h e r a p y ; i n a p p r o p r i a t e h e a l t h b e l i e f s ; p r e v i o u s o r p r e s e n t non-72 compliance w i t h m e d i c a l regimens; and f i n a l l y , f a m i l y i n s t a b i l i t y . INTERVENTIONS TO PROMOTE COMPLIANCE Becker p o i n t s out t h a t r e s e a r c h i n t o t h e f a c t o r s a s s o c i a t e d w i t h p a t i e n t c o m p l i a n c e , w h i l e p r o v i d i n g i n f o r m a t i o n c o n c e r n i n g t h i s phenomenon, a r e d e f i c i e n t because t h e m a j o r i t y o f t h e s e f a c t o r s a r e n o t amenable t o change. C h a r a c t e r i s t i c s o f the regimen, p a t i e n t - p h y s i c i a n r e l a t i o n s h i p and t h e w a i t i n g time i n c l i n i c s can be a l t e r e d t o some degree t o promote g r e a t e r p a t i e n t c o o p e r a t i o n , but o t h e r f a c t o r s such as demographic, p h y s i o l o g i c a l and s o c i o b e h a v i o r a l c h a r a c t e r i s t i c s o f p a t i e n t s a r e 73 r e l a t i v e l y e n d u r i n g and u n a l t e r a b l e . Haynes reviewed o v e r f o r t y s t u d i e s t h a t r e p o r t e d c l i n i c a l maneuvers t o improve c o m p l i a n c e , and has d i v i d e d t h e s e s t u d i e s i n t o t h r e e c l a s s i f i c a t i o n s based on the s t r a t e g y used: e d u c a t i o n a l , b e h a v i o r a l and Haynes, op. c i t . , p.39. Becker, op. c i t . , p.40. 35 a m i x t u r e o f t h e s e two, o r combined s t r a t e g i e s . He examined the f i n d i n g s f o r m e t h o d o l o g i c a l soundness, c l i n i c a l l y s i g n i f i c a n t r e s u l t s , and t h e degree t o which the s t r a t e g y was e f f e c t i v e i n promoting t h e r a p e u t i c outcomes. While the m e t h o d o l o g i c r a t i n g was s i m i l a r f o r a l l s t r a t e g i e s , i t appears t h a t the b e h a v i o r a l and combined s t r a t e g i e s h o l d a s u b s t a n t i a l edge ov e r e d u c a t i o n a l s t r a t e g i e s i n terms o f improving both c o m p l i a n c e 73 and t h e r a p e u t i c outcomes. EDUCATIONAL STRATEGIES Rosenberg s t a t e s t h a t a resume' o f t h e d a t a from s t u d i e s u s i n g e d u c a t i o n a l s t r a t e g i e s proves the t h e s i s t h a t p l a n n e d , o r g a n i z e d p a t i e n t e d u c a t i o n , when p r o v i d e d as a p a r t o f r o u t i n e p a t i e n t c a r e , can and does i n c r e a s e adherence t o a p r e s c r i b e d : m e d i c a l r e g i m e n . 7 4 However, N e u f e l d ' s c o n c l u s i o n i s t h a t t h e e v i d e n c e t h a t p a t i e n t e d u c a t i o n improves comp-75 1 i a n c e i s c o n v i n c i n g on n e i t h e r m e t h o d o l o g i c nor e d u c a t i o n a l grounds. BEHAVIORAL STRATEGIES B a r o f s k y s t a t e s t h a t the p h y s i c i a n ' s management o f t h e t h e r a p e u t i c regimen c o n s t i t u t e s an example o f o p e r a n t b e h a v i o r o c c u r r i n g ' i n . a s o c i a l s i t u a t i o n . B e h a v i o r a l t h e r a p e u t i c s i s c o n c e r n e d w i t h the r e c o g n i t i o n and t r e a t m e n t o f b e h a v i o r s t h a t i n t e r f e r e w i t h o p t i m a l h e a l t h and i t s achievement and a r e t h e r e f o r e , " n o n - a d a p t i v e " . B a r o f s k y i d e n t i f i e s t h r e e '°R.B. Haynes, " S t r a t e g i e s f o r Improving Compliance: A M e t h o d o l o g i c A n a l y s i s and Review," i n Compliance With M e d i c a l Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), pp.69-74. 73 S.G. Rosenberg, " P a t i e n t E d u c a t i o n : An E d u c a t o r ' s View," i n Compliance With T h e r a p e u t i c Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), p.98. 75 V.R. N e u f e l d , . " P a t i e n t E d u c a t i o n : A C r i t i q u e , " i n Compliance With  T h e r a p e u t i c Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), p.'88. 36 s t r a t e g i e s t h a t have been shown t o a f f e c t p a t i e n t c o m p l i a n c e t o m e d i c a l regimens: f i r s t i s t h e use o f b e h a v i o r m o d i f i c a t i o n t e c h n i q u e s which i n c l u d e d i f f e r e n t i a l r e i n f o r c e m e n t , e x t i n c t i o n , s h a p i n g , m o d e l l i n g , and d e s e n s i t i z a t i o n , and can be d e v e l o p e d i n t o t h e s t r a t e g i e s o f a v e r s i v e c o u n t e r c o n d i t i o n i n g , s e l f - c o n t r o l p r o c e d u r e s , f a m i l y - p a t i e n t m o n i t o r i n g o r feedback m o d e l l i n g o f s e l f - c a r e , and d e s e n s i t i z a t i o n t o a v e r s i o n s . The s u c c e s s o f any b e h a v i o r c o n t r o l p r o c e d u r e , he s a y s , depends on making e x p l i c i t the consequences o f a p a t i e n t : 1 s b e h a v i o r t o him. The second s t r a t e g y i s t h e use o f a l l members o f the h e a l t h d e l i v e r y team to i n c r e a s e t h e number o f c o n t a c t s t h e p a t i e n t has w i t h t h e r e i n f o r c e m e n t o f c o m p l i a n c e b e h a v i o r s . The t h i r d s t r a t e g y seeks t o improve c o m p l i a n c e by p r o v i d i n g s o c i a l c o n t r o l i n the form o f a p a t i e n t c o n t r a c t which s p e c i f i e s what t h e p a t i e n t can e x p e c t and what i s e x p e c t e d o f him. 76 B a r o f s k y f i n d s s u p p o r t f o r t h e s e s t r a t e g i e s i n the l i t e r a t u r e . COMBINED STRATEGIES F i n k d e s c r i b e s a combined s t r a t e g y , t h e c o n s e n s u a l regimen, which i s a p r o d u c t o f a p a r t i c u l a r t y p e o f n e g o t i a t i o n between the p a t i e n t and t h e h e a l t h c a r e p r o v i d e r s , where t h e regimen r e p r e s e n t s a consensus o r mutual c o n t r a c t . 7 7 In a s t u d y u t i l i z i n g a c o n s e n s u a l c o n t r a c t and a "management s p e c i a l i s t " who d e a l t w i t h both t h e f a m i l y and the c h i l d , f a m i l i e s r e p o r t e d i n c r e a s e d f e e l i n g s o f p e r s o n a l worth, c o n v i c t i o n o f t h e i n t e r e s t and r e s p e c t o f t h e p r o v i d e r and i n s t i t u t i o n toward the h e a l t h ; s t a t u s o f the c h i l d and f a m i l y , and a sense t h a t t h e p r o v i d e r showed 7 ^ I . B a r o f s k y , " B e h a v i o r a l T h e r a p e u t i c s and the Management o f T h e r a p e u t i c Regimens," i n Complinace With T h e r a p e u t i c Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), pp.100-109. 7 7 D . L . F i n k , " T a i l o r i n g the Consensual Regimen," i n Compliance With  T h e r a p e u t i c Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), p.110. 37 78 a p p r e c i a t i o n o f i n d i v i d u a l f a m i l y c i r c u m s t a n c e s . STUDIES OF COMPLIANCE IN HEMODIALYSIS POPULATIONS Kaplan De-Nour and Czaczkes s t u d i e d "compliance t o t h e d i e t and f l u i d r e s t r i c t i o n s i n f o r t y - t h r e e h e m o d i a l y s i s p a t i e n t s . They found t h a t a low f r u s t r a t i o n t o l e r a n c e and p r i m a r y and s e c o n d a r y g a i n s from t h e s i c k r o l e were most f r e q u e n t l y a s s o c i a t e d w i t h non-compliance and t h e s e d i f f e r e n t i a t e d s i g n i f i c a n t l y between c o m p l i e r s and n o n - c o m p l i e r s . " A c t i n g - o u t " b e h a v i o r , which was found i n both g r o u p s , was more s e v e r e i n t he n o n - c o m p l i a n t group. D e n i a l o f t h e s i c k r o l e , s u i c i d a l and homi-c i d a l i n t e n t i o n s , u s u a l l y on t h e p a r t o f t h e p a t i e n t ' s f a m i l y , were l e s s o f t e n a s s o c i a t e d w i t h non-compliance t o t h e d i e t and f l u i d r e s t -r i c t i o n s . In t h i s p a r t i c u l a r sample, a l m o s t h a l f o f t h e p a t i e n t s were 79 c o n s i d e r e d as a b u s e r s o f t h e d i e t a r y regimen. Czaczkes and Kaplan De-Nour a n a l y z e d p s y c h i a t r i c and p s y c h o l o g i c a l f a c t o r s o f h e m o d i a l y s i s p a t i e n t s p r i o r t o b e g i n n i n g c h r o n i c h e m o d i a l y s i s i n an e f f o r t t o p r e d i c t t h e i r c o m p l i a n c e t o t h e d i e t and f l u i d r e s t r i c -t i o n s . They were a b l e t o s u c c e s s f u l l y p r e d i c t which p a t i e n t s would have "good", " f a i r " and "bad" c o m p l i a n c e t o the d i e t t w e l v e months a f t e r t h e y began d i a l y s i s , more than s e v e n t y - f i v e p e r c e n t o f t h e t i m e . F a c t o r s which were a s s o c i a t e d w i t h non-compliance were a low f r u s t r a t i o n t o l e r a n c e , i n a b i l i t y t o d e l a y g r a t i f i c a t i o n , a tendency t o a c t out aggressive f e e l i n g s , d e n i a l o f i l l h e a l t h and e x c e s s i v e g a i n from the s i c k D.L. F i n k e t a l . , "The Management S p e c i a l i s t i n E f f e c t i v e P e d i a -t r i c Ambulatory Care," American J o u r n a l o f P u b l i c H e a l t h , 59:527-533, 1969. 79 Kaplan De-Nour and C z a c z k e s , "Noncompliance," pp.333-344. 38 r o l e ; w h i l e o b s e s s i v e - c o m p u l s i v e t r a i t s and a h i g h f r u s t r a t i o n t o l e r a n c e 80 seemed t o h e l p p a t i e n t s comply w i t h t h e i r r e s t r i c t i o n s . Winokur and o t h e r s made p s y c h o l o g i c a l and i n t e l l i g e n c e assessments p r i o r t o the i n i t i a t i o n o f p a t i e n t s i n t o c h r o n i c h e m o d i a l y s i s programs and compared t h e s e w i t h t he d i e t a r y adherence and work l e v e l s s i x months a f t e r t he s t a r t o f t h e r a p y . They were unable t o r e l a t e d i e t a r y adherence w i t h i n t e l l i g e n c e , but showed a tendency f o r d e n i a l o f t h e s i c k r o l e and 81 " a c t i n g - o u t " b e h a v i o r t o be a s s o c i a t e d w i t h non-compliance. Chidoda u t i l i z e d t h e H e a l t h B e l i e f Model i n her s t u d y o f com-p l i a n c e t o the me d i c a l regimen by h e m o d i a l y s i s p a t i e n t s and p a t i e n t s w i t h d i a b e t e s m e l l i t u s . She found t h a t h e m o d i a l y s i s p a t i e n t s w i t h a h i g h degree o f p e r c e i v e d s e r i o u s n e s s ; : t h a t i s , t h a t t h e y p e r c e i v e d t h e i r c o n d i t i o n s t o be s e r i o u s , were l e s s c o m p l i a n t than t h o s e w i t h low p e r c e i v e d s e r i o u s n e s s , c o n t r a r y t o t h e p r e d i c t e d r e s u l t s . The h y p o t h e s e s , d e r i v e d from t he model, were not s u p p o r t e d by the d a t a , and Chidoda c o n c l u d e s t h a t t he H e a l t h B e l i e f Model i s not a v a l i d p r e d i c t o r o f 82 b e h a v i o r f o r c h r o n i c a l l y i l l i n d i v i d u a l s . In her s t u d y o f c o m p l i a n c e i n h e m o d i a l y s i s p a t i e n t s , P i e r c e 83 u t i l i z e d t h e B a l a n c e Sheet P r o c e d u r e d e v e l o p e d by J a n i s and Mann as an i n t e r v e n t i o n d e s i g n e d t o i n c r e a s e d i e t a r y c o m p l i a n c e . Her r e s u l t s i n d i c a t e d t h a t t h a t t h e B a l a n c e Sheet P r o c e d u r e was h e l p f u l i n l o w e r i n g the p r e - d i a l y s i s serum p o t a s s i u m and between d i a l y s e s w e i g h t g a i n s i n some d i a l y s i s p a t i e n t s , but was not e f f e c t i v e f o r t h e group as a whole. 80 Kaplan De-Nour and C z a c z k e s , " P e r s o n a l i t y and Adjustment," p.104. 81 M.Z. Winokur e t a l . , " I n t e l l i g e n c e and Adjustment t o C h r o n i c H e m o d i a l y s i s , " J o u r n a l o f Ps y c h o s o m a t i c R e s e a r c h , 17:29-34, 1973. 82 Chi d o d a , l o p . c i t . p.89. 83 I.L. J a n i s and L. Mann, "A C o n f l i c t Theory Approach t o A t t i t u d e Change and D e c i s i o n - m a k i n g , " i n P s y c h o l o g i c a l F o u n d a t i o n s o f A t t i t u d e s , eds., A. Greenwald and o t h e r s (New York: Acedemic P r e s s , 1968), pp.329-363. 39 P i e r c e c o n c l u d e d t h a t her r e s u l t s i n d i c a t e d t h a t c o n s c i o u s , d e l i b e r a t i v e d e c i s i o n - m a k i n g by the p a t i e n t i n f l u e n c e s h i s a b i l i t y t o adhere t o the d i e t a r y r e s t r i c t i o n s and she urged f u r t h e r use o f the B a l a n c e Sheet 84 P r ocedure i n s t u d i e s o f c o m p l i a n c e . The l i t e r a t u r e on f a c t o r s a s s o c i a t e d w i t h c o m p l i a n c e r e v e a l t h a t the m e d i c a l regimens t h a t c h r o n i c h e m o d i a l y s i s p a t i e n t s must f o l l o w make i t u n l i k e l y t h a t a h i g h degree o f c o m p l i a n c e w i l l o c c u r . The regimen i s complex, i n v o l v e s a major d i s r u p t i o n o f p e r s o n a l h a b i t s and p a t i e n t s a r e e x p e c t e d t o c o n t i n u e i t i n d e f i n i t e l y . A r e v i e w o f the s t u d i e s t o d a t e o f c o m p l i a n c e i n h e m o d i a l y s i s p a t i e n t s r e v e a l s t h a t the m a j o r i t y o f such s t u d i e s have been conduc t e d by p s y c h i a t r i s t s who have i d e n t i f i e d c e r t a i n p s y c h i a t r i c d i a g n o s e s t h a t a r e a s s o c i a t e d w i t h non-compliance t o t h e d i e t a r y regimen. As has been p o i n t e d o u t , f a c t o r s which p e r t a i n t o the p e r s o n a l i t y , s o c i o b e h a v i o r a l o r demographic c h a r a c t e r i s t i c s o f i n d i v i d u a l s a r e r e l a t i v e l y e n d u r i n g and u n a l t e r a b l e . Such s t u d i e s do not o f f e r the n u r s e d i r e c t i o n i n e s t a b l i s h i n g e f f e c t i v e i n t e r v e n t i o n s t o i n c r e a s e c o m p l i a n c e . The s t u d y by P i e r c e i s a n o t a b l e e x c e p t i o n , and the B a l a n c e Sheet Procedure u t i l i z e d i n her s t u d y w i l l be d i s c u s s e d f u r t h e r i n the T h e o r e t i c a l Framework. The d i s c u s s i o n which f o l l o w s examines t h e p s y c h o l o g i c a l d i f f i -c u l t i e s e n c o u n t e r e d by h e m o d i a l y s i s p a t i e n t s as a r e s u l t o f t h e i r d i s e a s e and i t s t r e a t m e n t . P i e r c e , op. c i t . , p.134. 40 PSYCHOLOGICAL PROBLEMS ASSOCIATED WITH CHRONIC HEMODIALYSIS The p h y s i c a l problems which h e m o d i a l y s i s p a t i e n t s s u f f e r , c o u p l e d w i t h the s t r e s s o f l i f e on a machine and t h e n e c e s s i t y o f a d h e r i n g t o a s t r i n g e n t m e d i c a l regimen have c r e a t e d unique problems i n body image and s e l f - e s t e e m f o r the p a t i e n t . Wijsenbeek and Munitz note t h a t t h e p a t i e n t i s c o n t i n u a l l y c o n f r o n t e d w i t h t he e v i d e n c e o f the e x i s t e n c e o f h i s d i s e a s e by the a r t e r i o v e n o u s shunt o r the s c a r s from the n e e d l i n g o f h i s f i s t u l a . The attachment t o the d i a l y s i s machine and t h e c o n c o m i t a n t f l o w i n g o f b l o o d o u t s i d e t he body a r e p o t e n t causes f o r d i s t u r b a n c e s o f 85 the i n t e g r i t y o f body image. I t has been s u g g e s t e d t h a t t h e r e i s perhaps no s i t u a t i o n which i s as s t r e s s f u l t o p a t i e n t s and t h e i r f a m i l i e s as c h r o n i c h e m o d i a l y s i s . Shea has remarked t h a t t h e emotional r e a c t i o n t o the need f o r c h r o n i c h e m o d i a l y s i s may r e p r e s e n t t he g r e a t e s t o b s t a c l e t o s u c c e s s f u l 87 r e h a b i l i t a t i o n . I t i s not s u r p r i s i n g t h e n , t h a t soon a f t e r c h r o n i c h e m o d i a l y s i s programs became e s t a b l i s h e d , r e p o r t s o f t h e p s y c h o l o g i c a l s t r e s s e s o f a d a p t i n g t o l i f e on a machine began t o appear i n t h e l i t e r a t u r e . The formal p s y c h i a t r i c s t u d i e s r e f l e c t e d t he l o s s e s s u f f e r e d by h e m o d i a l y s i s p a t i e n t s as a r e s u l t o f t h e i r d i s e a s e , i t s t r e a t m e n t , o r both , and su g g e s t e d t he u n d e r l y i n g s o u r c e s o f c o n f l i c t . A. Wijsenbeek and A. Mu n i t z , "Group Treatment i n a H e m o d i a l y s i s C e n t r e , " P s y c h i a t r y , N e urology and N e u r o s u r g e r y , 73:213-220, 1970. 86 C. Hampers and E. Schupak, Long-Term H e m o d i a l y s i s (New York: Grune and S t r a t t o n , T967), p.147. 87 E . J . Shea e t a l . , " H e m o d i a l y s i s f o r C h r o n i c Renal F a i l u r e : IV, P s y c h o l o g i c a l C o n s i d e r a t i o n s , " Anna!s o f I n t e r n a l M e d i c i n e , 62:558, March, 1965. 41 W r i g h t o u t l i n e s t h e p s y c h o l o g i c a l s t r e s s o f h e m o d i a l y s i s i n t h r e e c a t e g o r i e s : a) a c t u a l o r t h r e a t e n e d l o s s e s , such as the l o s s o f body p a r t s o r f u n c t i o n s , l o s s o f membership i n gro u p s , f a i l u r e o f p l a n s o r v e n t u r e s , changes i n t h e way o f l i f e o r l i v i n g , l o s s o f home, p o s s e s s i o n s o r f i n a n c i a l s t a t u s , and the l o s s o f one's j o b o r o c c u p a t i o n ; b) i n j u r y o r t h r e a t o f i n j u r y , such as s u r g e r y , and the f e a r o f l o s i n g the p a t e n c y o f one's shunt o r f i s t u l a ; c) f r u s t r a t i o n o f d r i v e s o r d e r i v a t i v e s , such as d i e t a r y r e s t r i c t i o n s , and the l o s s o f se x u a l 88 s a t i s f a c t i o n . Kaplan De-Nour i d e n t i f i e d f i v e s o u r c e s o f s t r e s s f o r h e m o d i a l y s i s p a t i e n t s . These a r e : a) dependency; on t h e machine and s t a f f f o r hemo-d i a l y s i s t r e a t m e n t s , b) f r u s t r a t i o n ; t he f r u s t r a t i o n o f d r i v e s and t h e d e l a y o f g r a t i f i c a t i o n caused by the fo o d and f l u i d r e s t r i c t i o n s , t h e i n a b i l i t y t o t r a v e l , and sexual problems, c) a g g r e s s i o n ; as a r e s u l t o f the many l o s s e s t he p a t i e n t s u f f e r s , such as t h e l o s s o f f i n a n c i a l s t a t u s , p o s i t i o n , appearance, and the l o s s o f body f u n c t i o n s , and a l s o as a r e s u l t o f the r e s t r i c t i o n s o f d i a l y s i s and h i s dependency on the t r e a t m e n t , d) the changes i n body image; caused by r e p e a t e d o p e r a t i o n s , 89 the shunt, and the l a c k o f u r i n a t i o n , and e) t h e t h r e a t o f d e a t h . F i n a l l y , Abram has d e s c r i b e d t h e s t r e s s e s f o r p a t i e n t s a s : a) dependence v e r s u s independence needs i n t h e p a t i e n t , b) t h e r e l a t i o n -s h i p w i t h an i n a n i m a t e o b j e c t , t he h e m o d i a l y s i s machine, c) the R.G. W r i g h t , P. Sand and G. L i v i n g s t o n e , " P s y c h o l o g i c a l S t r e s s D u r i n g H e m o d i a l y s i s f o r C h r o n i c Renal F a i l u r 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 , 64:611-621, March, 1966. : A. Kaplan De-Nour, " P s y c h o t h e r a p y With P a t i e n t s on C h r o n i c H e m o d i a l y s i s , " B r i t i s h J o u r n a l o f P s y c h i a t r y , 116:207-215, F e b r u a r y , 1970. 42 ambivalence o v e r l i f e and d e a t h , d) the r o l e o f d e n i a l as a major d e f e n c e mechanism, and e) i n t e r p e r s o n a l c o n f l i c t s w i t h t h e d i a l y s i s p e r s o n n e l and the s p o u s e . ^ In c o n t r a s t t o the p s y c h i a t r i c l i t e r a t u r e which proposes a m e d i c a l model, p a t h o p h y s i o l o g i c a l a p p roach t o t h e r e a c t i o n s o f p a t i e n t s t o h e m o d i a l y s i s , S a n t o p i e t r o sees p a t i e n t s ' r e a c t i o n s as a normal r e s p o n s e t o t h e i r s t r e s s f u l c i r c u m s t a n c e s . She views the b e h a v i o r o f t h e s e p a t i e n t s as a means o f e x p r e s s i n g u n d e r l y i n g e m o t i o n a l needs, which she i d e n t i f i e s a s : a) t h e need t o g r i e v e t h e l o s s e s s u f f e r e d as a r e s u l t o f the d i s e a s e , b) t h e need f o r i d e n t i t y i n the f a c e o f a t h r e a t t o one's s e l f - c o n c e p t , c ) the need f o r s a f e t y and c o n t r o l o f t h e environment, d) t he need f o r communication o f one's f e a r s and hopes w i t h s i g n i f i c a n t o t h e r s , e) the need f o r l o v e and a c c e p t a n c e , and f ) the need t o e s t a b l i s h 91 one s o p t i m a l l e v e l o f w e l l n e s s . These a r t i c l e s g i v e r e c o g n i t i o n t o t h e f a c t t h a t an a r t i f i c i a l means o f s u p p o r t i n g l i f e c r e a t e p s y c h o l o g i c a l d i f f i c u l t i e s i n t h o s e who a r e dependent on machines f o r s u r v i v a l and demand o f them a complex a d a p t a t i o n p r o c e s s . COPING WITH HEMODIALYSIS A c c o r d i n g t o Levy and Reichsman, t h e p r o c e s s o f a d a p t a t i o n t o d i a l y s i s i n v o l v e s t h r e e s t a g e s . The f i r s t phase o r "Honeymoon Phase" i s marked by i n c r e a s e d p h y s i c a l w e l l - b e i n g , c o n f i d e n c e and hope. The 90 H.S. Abram, " S u r v i v a l by Machine: The P s y c h o l o g i c a l S t r e s s o f C h r o n i c H e m o d i a l y s i s , " P s y c h i a t r y i n M e d i c i n e , 1:41, 1971. 91 M.S. S a n t o p i e t r o , "Meeting t h e Emotional Needs o f H e m o d i a l y s i s P a t i e n t s and T h e i r Spouses," American J o u r n a l o f N u r s i n g , 75:629, A p r i l , 43 "Disenchantment o r Discouragement P e r i o d " f o l l o w s and i s c h a r a c t e r i z e d by s a d n e s s , h o p e l e s s n e s s and h e l p l e s s n e s s . F i n a l l y , i n the " P e r i o d o f Long-Term A d a p t a t i o n " t he p a t i e n t attempts t o cope w i t h h i s d i s e a s e and t r e a t m e n t . They remark t h a t some p a t i e n t s never r e a c h t he f i n a l 92 s t a g e . L i p o w s k i has s t a t e d t h a t t h e p r o c e s s o f l e a r n i n g t o cope w i t h a s e v e r e , l i f e - t h r e a t e n i n g d i s e a s e and an e q u a l l y t h r e a t e n i n g t r e a t m e n t i s a f o r m i d a b l e t a s k . I n d i v i d u a l s r e s o r t t o h a b i t u a l modes o f c o p i n g when 93 f a c e d w i t h i l l n e s s . However, most p e o p l e a r e i l l - p r e p a r e d t o have t o dea l w i t h . problems o f the scope and s i g n i f i c a n c e o f t h o s e f a c i n g t he d i a l y s a n d . He must somehow f i n d t h e r e s o u r c e s f o r the c o g n i t i v e and motor s k i l l s which a r e r e q u i r e d f o r d e v e l o p i n g new c o p i n g s t r a t e g i e s a t a time when h i s p h y s i c a l and emotional energy a r e a t t h e i r l o w e s t . Anger s t a t e s t h a t : " D e p r i v e d o f us u a l methods o f c o p i n g w i t h s t r e s s , t h a t i s , e a t i n g , d r i n k i n g , and sex, the d i a l y s i s p a t i e n t may r e s o r t t o t h e use o f d e f e n c e mechanisms i n o r d e r t o m a i n t a i n a sense o f e q u i l i b r i u m and s e l f - w o r t h . " 9 4 There i s much e v i d e n c e t o s u g g e s t t h a t d i a l y s i s ..patients-use d e n i a l e x t e n s i v e l y as t h e i r d e f e n c e a g a i n s t a n x i e t y . S h o r t and. W i l s o n found t h a t p s y c h o l o g i c a l t e s t i n g , u s i n g t h e M i n n e s o t a M u l t i p h a s i c P e r s o n a l i t y I n v e n t o r y showed t h a t as time on d i a l y s i s p r o g r e s s e d , p a t i e n t s used i n c r e a s i n g l e v e l s o f d e n i a l and r e p r e s s i o n , which i n t u r n was 95 a s s o c i a t e d w i t h d e c r e a s e d a n x i e t y . 92 F. Reichsman and N.B. Le v y , "Problems i n A d a p t a t i o n t o Main^ tenance H e m o d i a l y s i s , " A n n a l s o f I n t e r n a l M e d i c i n e , 70:860, December, 1972. QQ Z . J . L i p o w s k i , " P h y s i c a l I l l n e s s and t h e Coping P r o c e s s , P s y c h i a t r y i n M e d i c i n e , 3:95, 1972. 94 D. Anger, "The P s y c h o l o g i c a l S t r e s s o f C h r o n i c Renal D i s e a s e and Long-Term H e m o d i a l y s i s , " N u r s i n g C l i n i c s o f North A m e r i c a , 10:454, 1975. ^ . J . S h o r t and W.P. W i l s o n , " R o l e s o f D e n i a l i n C h r o n i c Hemo-d i a l y s i s , " A r c h i v e s o f General P s y c h i a t r y , 20:433-437, A p r i l , 1969. • 44 In e f f e c t says MacElveen, d e n i a l h e l p s t h e p a t i e n t t o cope w i t h t he l i f e and death i s s u e s and w i t h t h e c o m p l i c a t i o n s o f h i s i l l n e s s , and i n t h i s way h e l p s t o p r e v e n t s e v e r e d e p r e s s i o n . D e n i a l thus s e r v e s an a d a p t i v e f u n c t i o n f o r t h e p a t i e n t and i s seen as h e l p f u l as l o n g as 96 i t i s not so s t r o n g t h a t he f a i l s t o f o l l o w h i s t h e r a p e u t i c regimen.' T h i s view i s s u p p o r t e d by G i l m o r e , who su g g e s t s t h a t d e f e n c e mechanisms a r e not n e c e s s a r i l y a n t i t h e t i c a l t o s u c c e s s f u l c o p i n g , but 97 may be p a r t o f the o v e r a l l c o p i n g e f f o r t . However, G o l d s t e i n proposed t h a t d e n i a l c o u l d f u n c t i o n t o reduce c o m p l i a n c e i n h e m o d i a l y s i s p a t i e n t s . He found t h a t a group o f c h r o n i c h e m o d i a l y s i s p a t i e n t s s c o r e d s i g n i f i c a n t l y h i g h e r i n d e n i a l as measured by t he Min n e s o t a M u l t i p h a s i c P e r s o n a l i t y I n v e n t o r y , and s i g n i f i c a n t l y more e x t e r n a l on R o t t e r ' s Locus o f C o n t r o l S c a l e than a c o n t r o l group o f 98 p a t i e n t s w i t h o u t a l i f e - t h r e a t e n i n g o r s e v e r e m e d i c a l c o n d i t i o n . A c c o r d i n g t o R o t t e r , i n d i v i d u a l s p e r c e i v e t h e s o u r c e o f r e i n -forcement f o r t h e i r a c t i o n s as e i t h e r w i t h i n t hemselves and t h e r e f o r e under t h e i r c o n t r o l , o r under the c o n t r o l o f powerful o t h e r s o r chance, QQ and beyond t h e i r c o n t r o l . G o l d s t e i n and R e z n i k o f f propose t h a t as a r e s u l t o f the c o n t i n u o u s 96 P. MacElveen, " C o o p e r a t i v e T r i a d i n Home D i a l y s i s , " i n Com- m u n i c a t i n g N u r s i n g R e s e a r c h , V o l . I l l , ed., M. Batey ( B o u l d e r , C o l o r a d o : WICHE, 1972), p.137. 9 7 J . V . G i l m o r e , The P r o d u c t i v e P e r s o n a l i t y (San F r a n s c i s c o : A l b i o n P u b l i s h i n g Co., 1974), p.137. go A.M. G o l d s t e i n , " D e n i a l as a F u n c t i o n o f I n t e r n a l - E x t e r n a l C o n t r o l i n C h r o n i c Renal F a i l u r e " ( u n p u b l i s h e d d o c t o r a l d i s s e r t a t i o n , Fordham U n i v e r s i t y , New York, 1971). 99 J.B. R o t t e r , " G e n e r a l i z e d E x p e c t a n c i e s f o r I n t e r n a l V e r s u s E x t e r n a l C o n t r o l o f R e i n f o r c e m e n t , " P s y c h o l o g i c a l Monographs, 80:1-28, 1966. 45 r e s p o n s i b i l i t y and a n x i e t y d i a l y s i s p a t i e n t s f a c e i n m a i n t a i n i n g t h e i r l i v e s , t h e y adopt an E x t e r n a l Locus o f C o n t r o l framework and u t i l i z e m a s sive amounts o f d e n i a l i n an attempt t o cope w i t h t h i s a n x i e t y . The end r e s u l t i s an i n a b i l i t y t o p e r c e i v e the i m p o r t a n t r o l e t h e y p l a y i n keeping themselves a l i v e through adherence t o t h e i r d i e t and f l u i d r e s t r i c t i o n s . They recommend t h a t d i a l y s i s p a t i e n t s be encouraged t o see t h i s r o l e , and be a s s i s t e d i n managing t h e i r t h e r a p e u t i c r e g i m e n s . 1 0 0 The recommendation t h a t p a t i e n t s need encouragement t o assume an a c t i v e r o l e i n managing t h e i r regimens i s echoed by Anger. She s t a t e s t h a t p a t i e n t s w i l l be m o t i v a t e d t o a c h i e v e t h e i r h i g h e s t l e v e l o f r e h a b i l i t a t i o n , o n l y i f t h e y f e e l t h e y a r e i n c o n t r o l and have o p t i o n s i n l i f e from which t o c h o o s e . 1 0 1 T h i s s u g g e s t s a p r o b l e m - s o l v i n g a p p r o a c h , which G i l m o r e s t a t e s i s the f i n a l s t e p i n the c o p i n g p r o c e s s . T h i s p r o c e s s i n v o l v e s : a) p e r c e i v i n g a s t i m u l u s o r problem, b) a p p r a i s i n g t h e a l t e r n a t i v e p o s s i b i l i t i e s f o r r e s o l v i n g i t , and c) a r r i v i n g a t some c o n c l u s i o n o r d e c i s i o n r e g a r d i n g a c o u r s e o f a c t i o n . The b e n e f i t s o f s u c c e s s f u l c o p i n g w i t h a new s i t u a t i o n which r e q u i r e s a d a p t a t i o n , he s a y s , a r e a 102 sense o f m astery and i n c r e a s e d s e l f - e s t e e m . T h e r e i s a d i s t i n c t i o n between c o m p l i a n c e and the s u c c e s s f u l c o p i n g r e f e r r e d t o above. The term "comply" has c o n n o t a t i o n s o f sub-m i s s i v e n e s s o f one person t o t h e w i l l o f a n o t h e r . B l a u p o i n t s o u t t h a t t h e p a t i e n t i s p l a c e d i n a p o s i t i o n where, "...he must s u b o r d i n a t e him-A.M. G o l d s t e i n and M. R e z n i k o f f , " S u i c i d e i n C h r o n i c Hemo-d i a l y s i s P a t i e n t s From an E x t e r n a l Locus o f C o n t r o l Framework," American  J o u r n a l o f P s y c h i a t r y , 127:1204-1207, March, 1971. 1 0 1 A n g e r , op. c i t . , p.456. 102 G i l m o r e , op. c i t . , p.141. 46 s e l f t o t h e o t h e r and comply w i t h h i s wishes as an inducement f o r 103 f u r n i s h i n g the needed h e l p . " T h i s sense o f p o w e r l e s s n e s s i s c l o s e l y l i n k e d w i t h E x t e r n a l Locus o f C o n t r o l . R o t t e r d e v e l o p e d h i s I n t e r n a l - E x t e r n a l Locus o f C o n t r o l C o n s t r u c t on Seeman's work on p o w e r l e s s n e s s and a l i e n a t i o n . Seeman d e f i n e d p o w e r l e s s n e s s as the e x p e c t a n c y o r the p r o b a b i l i t y h e l d by t h e i n d i v i d u a l t h a t h i s own b e h a v i o r cannot d e t e r m i n e t h e outcome o r r e i n -f o r c ement he s e e k s , and s t a t e d t h a t t h i s o c c u r s when t h e i n d i v i d u a l ' s 104 minimal s t a n d a r d s f o r c l a r i t y i n d e c i s i o n - m a k i n g were not met. Johnson s t a t e s t h a t p o w e r l e s s n e s s i s equated w i t h t h e p e r c e i v e d e x t e r n a l c o n t r o l o f e v e n t s i n t h e l e a r n i n g v a r i a b l e , e x p e c t a n c y . Operat-i n g as t h i s l e a r n i n g v a r i a b l e , i t c o u l d be e x p e c t e d t o i n f l u e n c e l e a r n i n g e i t h e r i n the sense o f the a c q u i s i t i o n o f knowledge o r o f d e v e l o p i n g e f f e c t i v e g o a l - d i r e c t e d b e h a v i o r . The d i r e c t i o n o f t h i s i n f l u e n c e would be n e g a t i v e s i n c e knowledge o r g o a l - d i r e c t e d b e h a v i o r i s s i m p l y i r r e l e v a n t and u n n e c e s s a r y when the i n d i v i d u a l does not p e r c e i v e t h a t f u t u r e e v e n t s 105 can be c o n t r o l l e d by h i s own a c t i o n s . P r o v i d i n g o p p o r t u n i t i e s f o r the p a t i e n t t o e x e r c i s e c o n t r o l o v e r h i m s e l f and e v e n t s t h a t a f f e c t him a r e ways the nurse can combat power-l e s s n e s s , a c c o r d i n g t o R o b e r t s . C o n t r o l b e h a v i o r , Schutz s t a t e s , r e f e r s t o the d e c i s i o n -1 n o P.M. B l a u , Exchange and Power i n S o c i a l L i f e (New York: W i l e y and Sons, 1964), p.22. 1 0 4M. Seeman, "On t h e Meaning o f A l i e n a t i o n , " American S o c i o l o g i c a l  Review, 24:785-768, December, 1959. 105 D. Johnson, " P o w e r l e s s n e s s : A S i g n i f i c a n t D e t erminant o f P a t i e n t B e h a v i o r ? " J o u r n a l o f N u r s i n g E d u c a t i o n , 6:40, A p r i l , 1967. 1 0 6 S . L . R o b e r t s , B e h a v i o r a l Concepts and t h e C r i t i c a l l y 111 P a t i e n t (Englewood 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 . , 1976), p.128. 47 making p r o c e s s between p e o p l e . 1 0 7 T a n c r e d i , a l a w y e r , has d i s c u s s e d t h e l e g a l and e t h i c a l c o n s i d e r a -t i o n s o f the d i a l y s i s s i t u a t i o n as i t r e l a t e s t o m e d i c a l d e c i s i o n -making by the nu r s e . He emphasizes t h e tremendous power p o s s e s s e d by the n u r s e , and t h e p o s s i b i l i t y c r e a t e d by the h e m o d i a l y s i s p a t i e n t s ' dependency on machiner y t o f o s t e r f e e l i n g s o f d e h u m a n i z a t i o n and power-l e s s n e s s i n t h e s e p a t i e n t s . He proposes t h a t n u r s e s d e v e l o p a model o f med i c a l d e c i s i o n - m a k i n g which a l l o w s f o r e f f e c t i v e p a t i e n t p a r t i c i p a t i o n . T h i s p a r t n e r s h i p r e l a t i o n s h i p would a l l o w both t he p a t i e n t and t h e n u r s e t o r e t a i n power t o a f f e c t the c o u r s e o f t r e a t m e n t , as both would have 1 08 power f o r making c r i t i c a l d e c i s i o n s . The p o w e r l e s s n e s s and dependency o f p a t i e n t s d e s c r i b e d i n t h e above a r t i c l e s seems t o d e s c r i b e t h e s i t u a t i o n o f t h e h e m o d i a l y s i s p a t i e n t v e r y w e l l . He i s dependent on o t h e r s f o r l i f e - s a v i n g i n t e r v e n t i o n and i s t o l d t h a t he must comply w i t h an u n d e s i r a b l e and d i f f i c u l t regimen, and t h a t f a i l u r e t o do so w i l l r e s u l t i n d i r e consequences o r even death f o r him. When the p a t i e n t f a i l s t o meet t h e s e e x p e c t a t i o n s o f the s t a f f , he i s admonished f o r h i s a c t i o n s , and o f t e n made t o f e e l t h a t he has a l a c k o f w i l l - p o w e r and c h a r a c t e r . Communication between t h e s t a f f and t h e p a t i e n t about t he t o p i c o f d i e t a r y non-compliance i s o f t e n s e l f - d e f e a t i n g , and the p a t i e n t c o n t i n u e s i n a s t a t e o f g u i l t - s h a m e o v e r h i s l a c k o f a b i l i t y t o adhere t o h i s r e s t r i c t i o n s . He i s not g i v e n t he l u x u r y o f examining t he problem i n 1 0 7W.C. S c h u t z , FIRO: A T h r e e - D i m e n s i o n a l Theory o f I n t e r p e r s o n a l  B e h a v i o r (New York: H o l t , R i n e h a r t and Winston, Inc., I 9 6 0 ) , p.86. 1 gg L.R. T a n c r e d i , " T h e Nurse, M e d i c a l D e c i s i o n - M a k i n g and E t h i c s , " i n N u r s i n g and t h e Nep h r o l o g y P a t i e n t , ed., L . S c h l o t t e r ( F l u s h i n g , • New York: M e d i c a l E x a m i n a t i o n Pub. Co., 1973), pp.19-24. 48 terms o f w e i g h i n g t h e a l t e r n a t i v e s , l o o k i n g a t consequences, and s e e k i n g a d d i t i o n a l i n f o r m a t i o n , a l l o f which a r e a s p e c t s o f c o n s c i o u s , d e l i b e r a t i v e d e c i s i o n - m a k i n g . The r e s p o n s i b i l i t y o f t h e p a t i e n t f o r h i s d i e t i s not a sh a r e d r e s p o n s i b i l i t y , but an imposed one. The l i t e r a t u r e s u p p o r t s t h e u s e o f an i n t e r v e n t i o n which a l l o w s p a t i e n t s t o p a r t i c i p a t e i n the d e c i s i o n - m a k i n g p r o c e s s i n r e l a t i o n t o h i s r e s t r i c t i o n s . An i n t e r v e n t i o n which encourages p a t i e n t s t o e s t a b l i s h t h e i r own g o a l s c o n c e r n i n g t h e d i e t and f l u i d r e s t r i c t i o n s c o u l d i n c r e a s e p a t i e n t a d herence, w h i l e a t t h e same time p r o v i d i n g p a t i e n t s w i t h an e x p e r i e n c e o f s u c c e s s f u l c o p i n g , t h e r e b y enhancing t h e i r f e e l i n g s o f mastery, power, and s e l f - e s t e e m . A t o o l d e v i s e d by J a n i s and Mann, which has been used i n o t h e r a r e a s t o a s s i s t p e o p l e i n d e c i s i o n - m a k i n g , :.is:.a means*, o f a s s i s t i n g , p a t i e n t s t o examine a l t e r n a t i v e s t o t h e i r b e h a v i o r . T h i s t o o l i s d i s c u s s e d i n t h e T h e o r e t i c a l Framework o f t h e s t u d y , which f o l l o w s . THEORETICAL FRAMEWORK: THE DECISION-MAKING MODEL J a n i s and Mann have d e v e l o p e d a d e c i s i o n - m a k i n g model which c o n c e p t u a l i z e s d e c i s i o n a l c o n f l i c t s i n terms o f a b a l a n c e s h e e t which r e p r e s e n t s t h e p o t e n t i a l g a i n s , o r p o s i t i v e i n c e n t i v e s , and the p o t e n t i a l l o s s e s , o r n e g a t i v e i n c e n t i v e s , t h a t a r e a n t i c i p a t e d by the d e c i s i o n -1OQ maker when he e v a l u a t e s each a l t e r n a t i v e open t o him. One o f the main hypotheses o f the p r o c e d u r e i s t h a t a person who i s e x p e r i e n c i n g c o n f l i c t about c a r r y i n g o u t a s t r e s s f u l c o u r s e o f a c t i o n w i l l d i s p l a y a g r e a t e r r e a d i n e s s t o r e l y on a c o u n s e l l o r ' s recommendations i f : a) the c o u n s e l l o r c o n d u c t s an i n i t i a l i n t e r v i e w , d u r i n g which he J a n i s and Mann, l o c . c i t . 49 asks f o r c o n f i d e n t i a l i n f o r m a t i o n , such as the p a t i e n t ' s f e e l i n g s about h i s f a i l u r e t o c o n t r o l h i s e a t i n g b e h a v i o r , and b) shows r e s p e c t f o r d i s c l o s u r e s o f p e r s o n a l s h o r t c o m i n g s by g i v i n g p o s i t i v e feedback i n t h e form o f e x p l i c i t a c c e p t a n c e s t a t e m e n t s . 1 1 0 The d e c i s i o n a l b a l a n c e s h e e t i s i n t e n d e d p r i m a r i l y t o r e d u c e p o s t -d e c i s i o n a l r e g r e t by p r o v i d i n g e m o t i o n a l i n n o c u l a t i o n f o r subsequent .: . s t r e s s through a n t i c i p a t i o n o f p o s s i b l e n e g a t i v e consequences. The a n t i c i p a t e d g a i n s ; , o r b e n e f i t s , and t h e a n t i c i p a t e d l o s s e s , o r c o s t s , can be c a t e g o r i z e d i n t o f o u r major t y p e s o f consequences: a) u t i l i t a r i a n g a i n s o r l o s s e s t o s e l f , b) u t i l i t a r i a n g a i n s o r l o s s e s t o s i g n i f i c a n t o t h e r s , c) a p p r o v a l from s i g n i f i c a n t o t h e r s , and d) s e l f - a p p r o v a l o r s e l f - d i s a p p r o v a l - 1 1 1 The d e c i s i o n - m a k i n g p r o c e s s o p t i m a l l y i n v o l v e s c o n s i d e r a t i o n o f a l l r e l e v a n t i n f o r m a t i o n . A t t e n t i o n to p o s s i b l e n e g a t i v e outcomes, which a r e o f t e n o v e r l o o k e d , i s e s p e c i a l l y i m p o r t a n t because i t m i n i m i z e s 112 p o s t - d e c i s i o n a l r e g r e t when and i f such outcomes o c c u r . Jam's r e p o r t s the r e s u l t s o f s e v e r a l s t u d i e s u s i n g t h e d e c i s i o n a l b a l a n c e sheet, and i t appears t o have a s i g n i f i c a n t e f f e c t on t h e i n d i v i d u a l ' s commitment t o a c o u r s e o f a c t i o n , as measured by a c t u a l b e h a v i o r . Thus, a t t e n d a n c e at. an e a r l y morning e x e r c i s e group was s i g n i f i c a n t l y g r e a t e r i n an e x p e r i m e n t a l group exposed t o t h e B a l a n c e 113 Sheet Procedure, than i n a c o n t r o l group not exposed t o the p r o c e d u r e ; 1 1 0 I . L . Jam's, C h a n g i n g ^ B e h a v i o r Through C o u n s e l l i n g (New Hayen: The Y a l e U n i v e r s i t y P r e s s , 1975), p.178. ^ I . L . Jam's, "Stages i n the D e c i s i o n - M a k i n g P r o c e s s , " i n T h e o r i e s o f C o g n i t i v e C o n s i s t e n c y , ed., P..P. A b e l s o n ( C h i c a g o : Rand M c N a l l y , 1968),pp.577-588. 1 1 2 I b i d Jam's, Changing B e h a v i o r , p.31. weight l o s s was s i g n i f i c a n t l y g r e a t e r i n a group exposed t o the Ba l a n c e Sheet Procedure i n a wei g h t r e d u c i n g c l i n i c , t h a n i n t h e c o n t r o l 114 group which was not exposed t o the p r o c e d u r e ; and t h e group exposed t o t he pr o c e d u r e among a l a r g e r group who were a t t e m p t i n g t o s t o p smoking, a c t u a l l y smoked fewer c i g a r e t t e s a y e a r a f t e r t h e i n t e r v e n t i o n 115 than the i n d i v i d u a l s who were not exposed t o the p r o c e d u r e . Mann used t h e B a l a n c e Sheet P r o c e d u r e w i t h a group o f h i g h s c h o o l s t u d e n t s i n an attempt t o i n d u c e them t o c o n s i d e r r e l e v a n t f a c t s r e g a r d i n g t h e i r c h o i c e o f c o l l e g e . In comparison w i t h a c o n t r o l group o f s t u d e n t s from the same h i g h s c h o o l who were not exposed t o the Ba l a n c e Sheet P r o c e d u r e , the e x p e r i m e n t a l group tended t o s e l e c t a wi d e r a r r a y o f a l t e r n a t i v e s i n f o r m u l a t i n g a d e c i s i o n , t o t a k e i n t o a c c o u nt more s e l f - r e l a t e d and fewer s o c i a l c o n s i d e r a t i o n s , t o e x p r e s s l e s s r e g r e t about t h e i r c h o i c e , and were l e s s i n t e r e s t e d i n r e c e i v i n g s u p p o r t i v e , d i s s o n a n c e - r e d u c i n g i n f o r m a t i o n i n r e l a t i o n t o t h e i r c h o i c e o f c o l l e g e . P i e r c e used the B a l a n c e Sheet P r o c e d u r e i n her s t u d y o f c o m p l i a n c e i n h e m o d i a l y s i s p a t i e n t s , w i t h some s u g g e s t i o n t h a t the p r o c e d u r e was e f f e c t i v e i n i n c r e a s i n g c o m p l i a n c e i n some o f t h e p a t i e n t s i n her s t u d y 117 group. These r e s u l t s tend t o s u p p o r t the u n d e r l y i n g t h e o r y t h a t t h e d e c i s i o n a l b a l a n c e s h e e t a s s i s t s i n d i v i d u a l s t o c l a r i f y t h e i r c h o i c e o f a l t e r n a t i v e s and t o make more s a l i e n t t h e f a c t t h a t t h e y do have c h o i c e s . 1 1 4 I b i d , p.23. 1 1 5 I b i d , p.24. 1 1 6 L . Mann, "Use o f a B a l a n c e Sheet P r o c e d u r e t o Improve the Q u a l i t y o f P e r s o n a l D e c i s i o n - M a k i n g : A f i e l d Experiment With C o l l e g e A p p l i c a n t s , " J o u r n a l o f V o c a t i o n a l B e h a v i o r , 2:291-300, March, 1972. 1 1 7 P i e r c e , op. c i t . p.142. 51 GOAL SETTING Goal s e t t i n g has been used s u c c e s s f u l l y i n a d m i n i s t r a t i o n . G e n e r a l l y r e f e r r e d t o as Management by O b j e c t i v e s , i t i s e s s e n t i a l l y goal s e t t i n g by employees. A c c o r d i n g t o R obbins, Management by O b j e c t i v e s seeks t o m i n i m i z e e x t e r n a l c o n t r o l s and maximize i n t e r n a l m o t i v a t i o n 118 t h r o u g h j o i n t goal s e t t i n g and s e l f c o n t r o l . C a r r o l l and T o s i r e p o r t t h a t r e s e a r c h i n the use o f t h e Management by O b j e c t i v e s approach shows t h a t s p e c i f i c g o a l s r e s u l t i n s i g n i f i c a n t l y h i g h e r l e v e l s o f performance than when s u b j e c t s were j u s t t o l d t o do t h e i r b e s t . The p r o c e s s o f s e t t i n g g o a l s was found t o have a l a r g e r e f f e c t on performance than knowledge o f r e s u l t s , o r feedback a l o n e . 1 1 9 Zimbardo s t a t e s t h a t , "The a c t o f making a pledge o r promise known t o o t h e r s i n c r e a s e s the i n d i v i d u a l ' s e g o - i n v o l v e m e n t i n t h e 120 d e c i s i o n and i n c r e a s e s h i s m o t i v a t i o n t o c a r r y out h i s i n t e n t . " The e s t a b l i s h m e n t o f g o a l s f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s and between d i a l y s e s w e i g h t g a i n s i s a l o g i c a l e x t e n t i o n o f the d e c i s i o n - m a k i n g p r o c e s s , as i t r e p r e s e n t s a d e c i s i o n t o a c t , based upon p r i o r c o n s i d e r a t i o n o f t h e a l t e r n a t i v e s a v a i l a b l e . 118 S.P. Robbins, The A d m i n i s t r a t i v e P r o c e s s (Englewood 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 . , 1976), p.138. 119 S.J. C a r r o l l and H.L. T o s i , Management by O b j e c t i v e s : A p p l i c a t i o n and Research:(New York: M a c m i l l a n Pub. Co., 1973), pp. 69-83. "120 P. Zimbardo and E.B. Ebbesen, I n f l u e n c i n g A t t i t u d e s and  Changing B e h a v i o r . ( R e a d i n g , M a s s a c h u s e t t s ; Addison-Wesley Pub. Co., 1970], p.13. 52 SUMMARY T h i s c h a p t e r p r e s e n t e d a s e l e c t e d r e v i e w o f the l i t e r a t u r e p e r t i n e n t t o the s t u d y . Background i n f o r m a t i o n on the normal f u n c t i o n s o f t h e k i d n e y , t h e p h y s i o l o g i c a l consequences o f r e n a l f a i l u r e , and t h e development o f h e m o d i a l y s i s as a t r e a t m e n t m o d a l i t y i s p r e s e n t e d . The c o n t i n u i n g p h y s i c a l problems f a c e d by c h r o n i c h e m o d i a l y s i s p a t i e n t s and the p s y c h o l o g i c a l s e q u e l a o f l i f e on d i a l y s i s a r e d i s c u s s e d . The r e s e a r c h on c o m p l i a n c e t o t h e r a p e u t i c regimens i s summarized, w i t h emphasis on s t u d i e s u t i l i z i n g h e m o d i a l y s i s p a t i e n t s , and f i n a l l y , t he t h e o r e t i c a l framework on which the s t u d y was based i s p r e s e n t e d . CHAPTER I I I METHODOLOGY T h i s c h a p t e r c o n t a i n s t h e d e s c r i p t i o n o f t h e d e s i g n o f the s t u d y , the c l i n i c a l s e t t i n g and the c r i t e r i a used t o s e l e c t t h e sample. The t o o l s and methods used t o c o l l e c t and a n a l y z e t h e data a r e d e s c r i b e d . In a d d i t i o n t o the hy p o t h e s e s , s e v e r a l r e s e a r c h q u e s t i o n s a r e posed t o deal w i t h t he data p e r t a i n i n g t o t h e e x p e r i m e n t a l group. CLINICAL SETTING The h e m o d i a l y s i s u n i t s e l e c t e d f o r the s t u d y i s a s e l f - c o n t a i n e d u n i t i n a l a r g e t e a c h i n g h o s p i t a l . T h e r e a r e f o u r t e e n i n - c e n t r e beds a v a i l a b l e f o r h e m o d i a l y s i s on a t w e n t y - f o u r hour b a s i s . A p p r o x i m a t e l y s i x t y - t w o p a t i e n t s r e c e i v e h e m o d i a l y s i s t r e a t m e n t s two o r t h r e e times per week, r a n g i n g from f o u r t o e i g h t hours per d i a l y s i s . CRITERIA FOR SAMPLE SELECTION P a t i e n t s who met the f o l l o w i n g c r i t e r i a and agreed t o p a r t i c i p a t e i n t h e s t u d y c o n s t i t u t e d t h e sample: a) e i g h t e e n y e a r s o f age o r o v e r b) d i a l y z e t h r e e times per week c) d i a l y z e d u r i n g the day; from 0800 hours t o 2100 hours d) can r e a d , w r i t e and u n d e r s t a n d E n g l i s h . The p a t i e n t s s e l e c t e d were then randomly a s s i g n e d t o e i t h e r e x p e r i m e n t a l o r c o n t r o l c o n d i t i o n s . 53 54 RESEARCH DESIGN An e x p e r i m e n t a l d e s i g n was used, w i t h an E x p e r i m e n t a l and C o n t r o l group. The independent v a r i a b l e was t h e n u r s i n g i n t e r v e n t i o n which c o n s i s t e d o f c o n d u c t i n g an i n i t i a l i n t e r v i e w , a s s i s t i n g p a t i e n t s t o : c o n s i d e r t h e consequences o f adherence and non-adherence t o t h e d i e t and f l u i d r e s t r i c t i o n s , and then t o e s t a b l i s h t h e i r own g o a l s f o r between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . These two measurements, between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum po t a s s i u m l e v e l s , were the dependent v a r i a b l e s . The s t u d y was c a r r i e d o u t i n t h r e e phases: P r e - I n t e r v e n t i o n , which was the s i x month p e r i o d p r i o r t o t h e i n i t i a t i o n o f t h e n u r s i n g i n t e r v e n t i o n ; I n t e r v e n t i o n Phase, which began w i t h exposure o f the E x p e r i m e n t a l group t o the n u r s i n g i n t e r v e n t i o n , and c o n t i n u e d f o r a t o t a l o f f i f t e e n d i a l y s e s ; and the Follow-Up Phase, which d i r e c t l y f o l l o w e d the I n t e r v e n t i o n Phase and c o n t i n u e d f o r a t o t a l o f n i n e d i a l y s e s . Data on t h e dependent v a r i a b l e s were o b t a i n e d f o r both the E x p e r i m e n t a l and C o n t r o l group p a t i e n t s i n a l l t h r e e phases. The P r e - I n t e r v e n t i o n Phase r e p r e s e n t s a b a s e l i n e measurement i n which the two groups were compared on the dependent v a r i a b l e s and demographic c h a r a c t e r i s t i c s t o d e t e r m i n e whether t h e y were . s i m i l a r i n t h e s e v a r i a b l e s p r i o r t o the i n t e r v e n t i o n . D u r i n g t h e I n t e r v e n t i o n Phase, the n u r s i n g i n t e r v e n t i o n was c a r r i e d o u t w i t h the E x p e r i m e n t a l group p a t i e n t s , who a l s o completed a W e l l - B e i n g R a t i n g S c a l e and c h a r t e d t h e i r p r o g r e s s toward t h e i r g o a l s on a P r o g r e s s Sheet a t each d i a l y s i s . In the Follow-Up Phase, between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s c o n t i n u e d t o be c o l l e c t e d f o r p a t i e n t s i n both groups, but n e i t h e r group was approached by the i n v e s t i g a t o r . 55 HYPOTHESES 1. There w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o t h e f l u i d r e s t r i c t i o n s between h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n u t i l i z i n g goal s e t t i n g i n a d e c i s i o n - m a k i n g model and h e m o d i a l y s i s p a t i e n t s who were not exposed t o the i n t e r v e n t i o n as measured by between d i a l y s e s w e i g h t g a i n s . A l t e r n a t i v e H y p o t h e s i s : Between d i a l y s e s weight g a i n s w i l l be s i g n i f i c a n t l y lower f o r h e m o d i a l y s i s p a t i e n t s exposed t o the.;nursing: i n t e r v e n t i o n than f o r t h o s e h e m o d i a l y s i s p a t i e n t s not exposed t o the i n t e r v e n t i o n . 2. There w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o the d i e t r e s t r i c t i o n s between h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n u t i l i z i n g goal s e t t i n g i n a d e c i s i o n - m a k i n g model and h e m o d i a l y s i s p a t i e n t s who were not exposed t o the i n t e r v e n t i o n as measured by p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . A l t e r n a t i v e H y p o t h e s i s : P r e - d i a l y s i s serum p o t a s s i u m l e v e l s w i l l be s i g n i f i c a n t l y lower f o r h e m o d i a l y s i s p a t i e n t s exposed t o t h e n u r s i n g i n t e r v e n t i o n than f o r t h o s e h e m o d i a l y s i s p a t i e n t s not exposed t o the i n t e r v e n t i o n . DESCRIPTION OF TOOLS USED 1. Measurement o f .^dependent v a r i a b l e s (see Appendix E) Measurement o f w e i g h t was d e t e r m i n e d by each p a t i e n t both p r e and p o s t d i a l y s i s on one s c a l e . B l o o d specimens were drawn as t h e p a t i e n t began d i a l y s i s , and were a n a l y z e d by the i n v e s t i g a t o r . 2. Face Sheet (see Appendix F) T h i s form is. a s i m p l e r e c o r d i n g o f t h e p e r t i n e n t demographic da t a o f a l l p a t i e n t s i n the s t u d y . I n f o r m a t i o n r e c o r d e d i n c l u d e d : a) age, b) sex, c) m a r i t a l s t a t u s , d) e d u c a t i o n ( i n y e a r s ) , e) employment s t a t u s , f ) number o f months s i n c e l a s t employment, g) l e n g t h o f i l l n e s s ( i n y e a r s ) , h). l e n g t h o f time on d i a l y s i s (in months). 56 2. I n t e r v i e w Guide (see Appendix G) T h i s g u i d e was d e v i s e d by the i n v e s t i g a t o r and c o n s t r u c t e d t o a c h i e v e s e v e r a l o b j e c t i v e s . As t h e b a s i s f o r t h e n u r s i n g i n t e r v e n t i o n which f o l l o w e d , t h e i n t e r v i e w attempted t o : a) o r i e n t the p a t i e n t t o the n a t u r e o f t h e s t u d y by.means o f e x p l a n a t i o n s g i v e n r e l a t i v e t o the c o n t e n t a r e a o f the q u e s t i o n s ; b) e l i c i t s p e c i f i c i n f o r m a t i o n from the p a t i e n t i n r e g a r d t o h i s know-l e d g e and u n d e r s t a n d i n g o f the d i e t and f l u i d r e s t r i c t i o n s , h i s l o n g -term g o a l s and f u t u r e p l a n s , the n a t u r e o f h i s s u p p o r t systems such as the s i g n i f i c a n t p e o p l e o r t h i n g s i n h i s l i f e , and h i s e x p e r i e n c e s w i t h h i s d i e t and f l u i d r e s t r i c t i o n s . Knowledge o f t h e p a t i e n t ' s u n d e r s t a n d i n g o f h i s d i e t and f l u i d r e s t r i c t i o n s was e s p e c i a l l y i m p o r t a n t , as a p a t i e n t c o u l d not be e x p e c t e d t o c o n t r o l h i s weight g a i n s and p o t a s s i u m l e v e l s i f he was unaware o f what b e h a v i o r s were r e q u i r e d o f him t o a c h i e v e t h i s ; c) f o c u s the p a t i e n t ' s a t t e n t i o n on what h i s l o n g - t e r m g o a l s were, and attempt t o have him r e l a t e t h e s e t o t h e n e c e s s i t y f o r m a i n t a i n i n g a h i g h l e v e l o f h e a l t h and w e l l - b e i n g . The I n t e r v i e w Guide was p r e - t e s t e d w i t h s i x p a t i e n t s who, because th e y d i a l y z e d a t n i g h t , had no c o n t a c t w i t h the s u b j e c t s o f the s t u d y . These p a t i e n t s met t h e c r i t e r i a f o r sample s e l e c t i o n , but were e x c l u d e d from the s t u d y because t h e y d i a l y z e d o v e r n i g h t . They were t o l d t h a t the i n v e s t i g a t o r was d o i n g a s t u d y on d i a l y s i s p a t i e n t s and the d i e t and f l u i d r e s t r i c t i o n s t h e y a r e asked t o f o l l o w . I t was emphasized t h a t t h e y were not the s t u d y s u b j e c t s , and t h a t the purpose o f a s k i n g them t o answer t h e q u e s t i o n s i n t h e I n t e r v i e w Guide.was t o t e s t t h e a p p r o p r i a t e n e s s o f the content; and wording o f the items i n t h e i n t e r v i e w . They were encou r a g e d . t o make o b s e r v a t i o n s and s u g g e s t i o n s and t o g i v e t h e i r o p i n i o n 57 o f t he q u e s t i o n s i n t h e I n t e r v i e w Guide. When the t e s t p a t i e n t s had completed t he i n t e r v i e w , t h e y were asked t h e f o l l o w i n g q u e s t i o n s : 1. Did you u n d e r s t a n d t he q u e s t i o n s ? 2. Were the q u e s t i o n s too long? 3. Was enough i n f o r m a t i o n g i v e n t o make t h e q u e s t i o n s u n d e r s t a n d a b l e ? 4. Did you f e e l t h a t any o f the q u e s t i o n s were too p e r s o n a l ? 5. Do you have any s u g g e s t i o n s t h a t would improve t h i s I n t e r v i e w Guide? The t e s t p a t i e n t s , a p p e a r e d q u i t e a b l e t o u n d e r s t a n d t he q u e s t i o n s as they answered a p p r o p r i a t e l y . The q u e s t i o n s d e a l i n g w i t h knowledge o f the d i e t and the meaning o f t h e p o t a s s i u m l e v e l were u n d e r s t o o d , but the degree o f vagueness and e r r o r i n t h e answers was e v i d e n t . The p a t i e n t s i n d i c a t e d t h a t t h e y u n d e r s t o o d t he q u e s t i o n s and d i d not f i n d them t o o p e r s o n a l . They c o u l d r e a d i l y i d e n t i f y t h e p e o p l e and t h i n g s t h a t were i m p o r t a n t t o them, and what t h e i r f u t u r e g o a l s were. In q u e s t i o n i n g t he p a t i e n t s about t h e i r knowledge o f t h e po t a s s i u m l e v e l , i t was found t h a t t he q u e s t i o n , "What i s y o u r u n d e r s t a n d i n g o f t h e po t a s s i u m l e v e l ? " was too g e n e r a l and p a t i e n t s sought c l a r i f i c a t i o n i n answering t he q u e s t i o n . A s k i n g t h e two f o l l o w i n g q u e s t i o n s : "What i s the ' s a f e ' range f o r po t a s s i u m ? " and "What happens when t h e p o t a s s i u m l e v e l i s v e r y h i g h ? " e n a b l e d t he p a t i e n t s t o answer, and p r o v i d e d t he i n f o r m a t i o n n e c e s s a r y . One p a t i e n t s u g g e s t e d t h a t t h e p a t i e n t ' s u r i n e o u t p u t be det e r m i n e d as t h i s would i n f l u e n c e h i s weight g a i n s and h i s d i f f i c u l t y w i t h t he f l u i d r e s t r i c t i o n s . On the b a s i s o f the r e s u l t s , t h e f o l l o w i n g changes were made i n the I n t e r v i e w Guide: Q u e s t i o n 8..was reworded t o r e a d : "I would l i k e t o f i n d o u t what y o u r u n d e r s t a n d i n g o f the po t a s s i u m l e v e l i s . F o r i n s t a n c e , what i s the ' s a f e ' range f o r the po t a s s i u m l e v e l ? What happens when the po t a s s i u m l e v e l i s 58 v e r y h i g h ? " Q u e s t i o n 12. was added t o determine whether t h e r e was a g r e a t v a r i a t i o n among t h e p a t i e n t s i n u r i n e o u t p u t and whether t h i s a f f e c t e d t he p a t i e n t ' s a b i l i t y t o adhere t o the f l u i d r e s t r i c t i o n s . T h i s q u e s t i o n r e a d : "Do you have y o u r own k i d n e y s ? What i s y o u r e s t i m a t e d d a i l y u r i n e o u t p u t ? " 3. B a l a n c e Sheet P r o c e d u r e ( s e e Appendix A) A f t e r t he p a t i e n t s i n the e x p e r i m e n t a l group had completed t he i n t e r v i e w , t h e y were asked t o c o n s i d e r t h e consequences o f t h e i r d e c i s i o n t o adhere o r not t o adhere to t h e d i e t and f l u i d r e s t r i c t i o n s . The form used was p a t t e r n e d a f t e r t h a t d e v e l o p e d by Jam's and Mann 1, and r e q u i r e d c o n s i d e r a t i o n o f t h e p o s s i b l e g a i n s and l o s s e s t o t h e p a t i e n t and h i s s i g n i f i c a n t o t h e r s t h a t would f o l l o w f o r both adherence and non-adherence to t he d i e t and f l u i d r e s t r i c t i o n s . The p a t i e n t was asked t o c o n s i d e r such consequences under each o f th e f o l l o w i n g c a t e g o r i e s : a) g a i n s t o s e l f , b) l o s s e s t o s e l f , c) g a i n s t o s i g n i f i c a n t o t h e r s , d) l o s s e s t o s i g n i f i c a n t o t h e r s , e) a p p r o v a l from s i g n i f i c a n t o t h e r s , f ) d i s a p p r o v a l from s i g n i f i c a n t o t h e r s , g) s e l f -a p p r o v a l , and h) s e l f - d i s a p p r o v a l . 4. Goal S e t t i n g C o n t r a c t (see Appendix B) A f t e r t he p a t i e n t had c o n s i d e r e d t h e consequences o f h i s d e c i s i o n i n r e g a r d t o h i s d i e t and f l u i d r e s t r i c t i o n s , he was asked t o s e t a goal f o r h i m s e l f f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s and weight g a i n s between d i a l y s e s . The p a t i e n t s wrote t h e s e g o a l s and s i g n e d t h e page on which t h e y were w r i t t e n . I.L. J a n i s and L. .Mann, "A C o n f l i c t T h e o r y Approach t o A t t i t u d e Change and D e c i s i o n - M a k i n g , 1 1 i n P s y c h o l o g i c a l F o u n d a t i o n s o f A t t i t u d e s , eds., A. Greenwald, T. Brock and T. Qstrom (New York: Academic P r e s s , 1968), pp.329-363. 59 5. W e l l - B e i n g R a t i n g S c a l e (see Appendix C) The q u e s t i o n s i n t h i s s c a l e were d e v i s e d by t h e i n v e s t i g a t o r t o determine p r i m a r i l y t h e p a t i e n t ' s e x p e r i e n c e o f t h e consequences he had i d e n t i f i e d i n t h e B a l a n c e Sheet P r o c e d u r e . Two o f t h e q u e s t i o n s , Q u e s t i o n 3. "How w e l l d i d you f e e l p h y s i c a l l y ? " and Q u e s t i o n 12. " A l l t h i n g s c o n s i d e r e d , how would you r a t e t he p a s t two d a y s ? " , were i n t e n d e d t o t e s t t h e assumption t h a t adherence t o the d i e t and f l u i d r e s t r i c t i o n s r e s u l t s i n i n c r e a s e d h e a l t h and w e l l - b e i n g i n h e m o d i a l y s i s p a t i e n t s . The f i r s t two q u e s t i o n s , "How w e l l were you a b l e t o r e s t r i c t y o u r f l u i d s ? " and "How w e l l were you a b l e t o ' s t i c k ' t o y o u r d i e t r e s t r i c t i o n s ? " , were i n c l u d e d t o o b t a i n t h e p a t i e n t ' s e s t i m a t e o f h i s adherence t o the r e s t r i c t i o n s , but t h e s c o r e o b t a i n e d on t h e s e two q u e s t i o n s was n o t i n c l u d e d i n the o v e r a l l " W e l l - B e i n g S c o r e " . T h i s s c a l e was not p r e - t e s t e d . 6. P r o g r e s s Sheet (see Appendix H) The p a t i e n t s i n -the E x p e r i m e n t a l group were each g i v e n a graph on which the v a l u e s f o r t h e p r e - d i a l y s i s serum p o t a s s i u m l e v e l , weight g a i n , and W e l l - B e i n g S c o r e o b t a i n e d a t each d i a l y s i s d u r i n g t h e I n t e r v e n t i o n Phase c o u l d be p l o t t e d . The p a t i e n t ' s g o a l s f o r between d i a l y s e s weight g a i n s r a n d p r e - d i a l y s i s serum p o t a s s i u m were o u t l i n e d i n r e d t o g i v e t he p a t i e n t a v i s u a l g u i d e o f h i s p r o g r e s s . i n r e l a t i o n t o h i s g o a l s . DATA COLLECTION The c o l l e c t i o n o f the dat a proceeded i n t h r e e phases: 1. P r e - I n t e r v e n t i o n Phase T h i s phase i n c l u d e d t he p r e l i m i n a r y p r e p a r a t i o n f o r the s t u d y . The I n t e r v i e w Guide was p r e - t e s t e d w i t h s i x p a t i e n t s , and r e v i s i o n s made. A l l p a t i e n t s who met t h e c r i t e r i a f o r i n c l u s i o n i n the st u d y were i d e n t i f i e d 60 and approached by the i n v e s t i g a t o r t o o b t a i n t h e i r c o o p e r a t i o n . The p a t i e n t s who m e t i t h e e s t a b l i s h e d c r i t e r i a and agreed t o p a r t i c i p a t e were then randomly a s s i g n e d t o e i t h e r e x p e r i m e n t a l o r c o n t r o l c o n d i t i o n s . F o l l o w i n g t h i s , the c o n s e n t forms (see Appendix D) were s i g n e d by t h e p a t i e n t , h i s a t t e n d i n g p h y s i c i a n , and a w i t n e s s . The demographic d a t a , and i n f o r m a t i o n c o n c e r n i n g each p a t i e n t ' s p r e - d i a l y s i s serum p o t a s s i u m l e v e l s and between d i a l y s e s w e i g h t g a i n s f o r c t h e ' . s i x month, p e r i o d . p r i o r i t o r t h e r . i n t e r v e n t i o n , were c o l l e c t e d from the p a t i e n t s ' c h a r t s . 2. I n t e r v e n t i o n Phase A t the b e g i n n i n g o f t h i s phase, t h e p a t i e n t s i n t h e E x p e r i m e n t a l group were i n t e r v i e w e d , completed t h e B a l a n c e Sheet P r o c e d u r e and e s t a b l i s h e d t h e i r p e r s o n a l g o a l s f o r between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . B e g i n n i n g w i t h t h e f i r s t d i a l y s i s a f t e r the E x p e r i m e n t a l group had completed t h e above p r o c e d u r e s , and c o n t i n u i n g f o r t h e next f i f t e e n d i a l y s e s , a l l p a t i e n t s had one m i l l i l i t e r o f b l o o d drawn a t the i n i t i a t i o n o f d i a l y s i s ; f o r : the:,purpose.•of,,serumv;.. p o t a s s i u m d e t e r m i n a t i o n , and had t h e i r w e i g h t g a i n s r e c o r d e d . The E x p e r i m e n t a l p a t i e n t s were approached by t h e i n v e s t i g a t o r w h i l e on d i a l y s i s and asked t o complete t h e W e l l - B e i n g R a t i n g S c a l e and P r o g r e s s Sheet. The C o n t r o l p a t i e n t s were not approached by t h e i n v e s t t i g a t o r d u r i n g the I n t e r v e n t i o n Phase. By p r e v i o u s agreement, the r e s u l t s o f t h e i r serum p o t a s s i u m d e t e r m i n a t i o n s were r e c o r d e d on t h e i r d a i l y d i a l y s i s s h e e t s which t h e y c o u l d examine. 3. Follow-Up Phase P r e - d i a l y s i s serujn p o t a s s i u m l e v e l s and between d i a l y s e s w e i g h t ; g a i n s c o n t i n u e d t o be c o l l e c t e d f o r a l l p a t i e n t s i n t h e s t u d y f o r an a d d i -t i o n a l n i n e . d i a l y s e s a f t e r the I n t e r v e n t i o n Phase, but n e i t h e r group was approached by the i n v e s t i g a t o r . 61 DATA ANALYSIS Both hypotheses were t e s t e d u s i n g t h e t - t e s t t o t e s t f o r a s i g -n i f i c a n t d i f f e r e n c e i n the between d i a l y s e s weight g a i n s and pre-"A:-d i a l y s i s serum p o t a s s i u m l e v e l s between the E x p e r i m e n t a l group p a t i e n t s and t he C o n t r o l group p a t i e n t s d u r i n g t he I n t e r v e n t i o n Phase. The t - t e s t i s a l s o used t o t e s t f o r a s i g n i f i c a n t d i f f e r e n c e between the E x p e r i m e n t a l and C o n t r o l group p a t i e n t s on t h e s e two v a r i a b l e s i n the P r e - I n t e r v e n t i o n and Follow-Up Phases, and f o r a s i g n i f i c a n t d i f f e r e n c e i n t h e between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum pot a s s i u m l e v e l s between phases, w i t h i n each group. The 0.05 l e v e l o f s i g n i f i c a n c e i s used f o r a l l s t a t i s t i c a l t e s t s o f the d a t a . ADDITIONAL RESEARCH QUESTIONS In o r d e r t o maximize t h e i n f o r m a t i o n a v a i l a b l e i n t h e d a t a , t he f o l l o w i n g a d d i t i o n a l r e s e a r c h q u e s t i o n s were posed: 1. Were the r e s u l t s o b t a i n e d f o r between d i a l y s e s weight gain's and p r e - .• d i a l y s i s serum p o t a s s i u m l e v e l s ; s i g n i f i c a n t l y " r e l a t e d t o the demo-g r a p h i c v a r i a b l e s i n any phase? 2. Were the E x p e r i m e n t a l p a t i e n t s s u c c e s s f u l i n a c h i e v i n g t h e i r g o a l s f o r a) between d i a l y s e s w e i g h t g a i n s ? b) p r e - d i a l y s i s serum potassium? 3. Did adherence t o the f l u i d r e s t r i c t i o n s by the • E x p e r i m e n t a l p a t i e n t s change o v e r t h e s t u d y p e r i o d ? D i d adherence t o the d i e t by t h e E x p e r i m e n t a l p a t i e n t s change o v e r t he study p e r i o d ? 4. Did the p a t i e n t ' s e s t i m a t e o f h i s w e l l - b e i n g change o v e r t h e s t u d y p e r i o d ? 5. Was w e l l - b e i n g r e l a t e d t o adherence t o a) t h e f l u i d r e s t r i c t i o n s ? b) t h e d i e t r e s t r i c t i o n s ? 6. Was the p a t i e n t ' s e s t i m a t e o f h i s w e l l - b e i n g s i g n i f i c a n t l y d i f f e r e n t on t h o s e days when he was a b l e t o a c h i e v e h i s g o a l s f o r between d i a l y s e s 62 w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s than on t h o s e days when he was n o t a b l e t o a c h i e v e h i s g o a l s ? STATISTICAL ANALYSES For each a d d i t i o n a l r e s e a r c h q u e s t i o n , t h e method o f s t a t i s t i c a l a n a l y s i s i s g i v e n below. The 0.05 l e v e l o f s i g n i f i c a n c e was used f o r a l l t e s t s o f the d a t a . 1. The demographic v a r i a b l e s o f the group as a whole were compared w i t h t h e w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s o b t a i n e d i n each phase u s i n g the t - t e s t f o r t h e v a r i a b l e s m a r i t a l s t a t u s and employment s t a t u s ; and Pearson P r o d u c t Moment C o e f f i c i e n t o f Cor-r e l a t i o n f o r age, l e n g t h o f time on d i a l y s i s and e d u c a t i o n . 2. Simple p e r c e n t a g e s were used t o i n d i c a t e the number o f p a t i e n t s who were a b l e t o a c h i e v e t h e i r g o a l s f o r between d i a l y s e s weight g a i n s and . p r e r d t a l y s i s serum p o t a s s i u m / l e v e l s d u r i n g t h e I n t e r v e n t i o n Phase. 3. The mean v a l u e s f o r weight g a i n s and serum p o t a s s i u m l e v e l s o b t a i n e d by t h e E x p e r i m e n t a l group p a t i e n t s d u r i n g t h e I n t e r v e n t i o n Phase were c o r r e l a t e d w i t h t h e p o s i t i o n a l number o f the d i a l y s i s a t which they were o b t a i n e d , u s i n g Pearson P r o d u c t Moment C o r r e l a t i o n C o e f f i c i e n t . 4. The mean W e l l - B e i n g R a t i n g s o b t a i n e d by the E x p e r i m e n t a l group p a t i e n t s a t each d i a l y s i s d u r i n g t h e I n t e r v e n t i o n Phase were ranked from l o w e s t to h i g h e s t and c o r r e l a t e d w i t h t h e p o s i t i o n a l number o f t h e d i a l y s i s a t which t h e y were o b t a i n e d , u s i n g Spearman Rank O r d e r C o e f f i c i e n t o f C o r r e l a t i o n . 5. Mean between d i a l y s e s w e i g h t g a i n s and W e l l - B e i n g R a t i n g s o b t a i n e d by the E x p e r i m e n t a l group p a t i e n t s a t each d i a l y s i s d u r i n g t h e I n t e r v e n -t i o n Phase were ranked from l o w e s t t o h i g h e s t , and c o r r e l a t e d u s i n g Spearman Rank Order C o r r e l a t i o n C o e f f i c i e n t . The d a t a f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s were t r e a t e d i n t h e same manner. 63 6. The mean W e l l - B e i n g R a t i n g , o b t a i n e d by t h e E x p e r i m e n t a l group p a t i e n t s . a t t h o s e ' d i a l y s e s " d u r i n g t h e I n t e r v e n t i o n Phase when t h e i r g o a l s f o r between d i a l y s e s weight g a i n s were met was compared w i t h t he mean W e l l - B e i n g R a t i n g o b t a i n e d a t t h o s e d i a l y s e s when t h e i r g o a l s were not met, u s i n g t he t - t e s t . T h i s was r e p e a t e d f o r the data p e r t a i n i n g t o p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . SUMMARY T h i s c h a p t e r p r o v i d e d a d e s c r i p t i o n o f the methodology o f t h e stu d y . The r e s e a r c h d e s i g n i s o u t l i n e d , w i t h a d e s c r i p t i o n o f t h e s e t t i n g o f the s t u d y , t he c r i t e r i a f o r sample s e l e c t i o n , and the t o o l s used. The hypotheses and a d d i t i o n a l r e s e a r c h q u e s t i o n s a r e s t a t e d , and the methods used i n the c o l l e c t i o n and a n a l y s i s o f t h e data a r e d e s c r i b e d . CHAPTER IV RESULTS The r e s u l t s o f t h e s t u d y i n c l u d e a d e s c r i p t i o n o f the c h a r a c -t e r i s t i c s o f the s t u d y p a r t i c i p a n t s , an a n a l y s i s o f the r e s p o n s e s t o t h e s t r u c t u r e d i n t e r v i e w and a r e p o r t o f t h e r e s u l t s o f the B a l a n c e Sheet and Goal S e t t i n g P r o c e d u r e s . , Each o f t h e s e p r o v i d e s t h e background a g a i n s t which t h e hypotheses were t e s t e d . The r e s u l t s o f the hypotheses t e s t i n g f o l l o w s , and t h e t r e n d s o b s e r v e d by each group i n each phase o f t h e s t u d y a r e r e p o r t e d . F i n a l l y , the f i n d i n g s r e l a t i n g t o t h e a d d i t i o n a l r e s e a r c h q u e s t i o n s a r e p r e s e n t e d . THE SAMPLE A t o t a l o f s e venteen p a t i e n t s met a l l t h e e s t a b l i s h e d c r i t e r i a f o r i n c l u s i o n i n t h e s t u d y , and o f t h e s e , o n l y one r e f u s e d t o p a r t i c i p a t e . The r e m a i n i n g s i x t e e n p a t i e n t s were randomly a s s i g n e d t o e i t h e r E x p e r i -mental o r C o n t r o l c o n d i t i o n s , w i t h e i g h t p a t i e n t s i n each group. Data on t h e between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s were a v a i l a b l e f o r a l l s u b j e c t s f o r the six-month P r e - I n t e r v e n t i o n Phase, and t h e e n t i r e I n t e r v e n t i o n Phase. One p a t i e n t i n the C o n t r o l group l e f t f o r a h o l i d a y i m m e d i a t e l y a f t e r the I n t e r v e n t i o n Phase, and t h e r e f o r e no d a t a a r e a v a i l a b l e f o r t h i s p a t i e n t i n t h e Follow-Up Phase. The demographic c h a r a c t e r i s t i c s o f each group a r e summarized i n T a b l e I. 64 65 TABLE I DEMOGRAPHIC CHARACTERISTICS EXPERIMENTAL AND CONTROL GROUPS EXPERIMENTAL CONTROL AGE 42.8 45.3 MARITAL STATUS m a r r i e d 3 5 widowed, d i v o r c e d s i n g l e o r s e p a r a t e d 5 3 SEX males 4 7 females 4 1 EDUCATION ( y e a r s ) 11.1 11 LENGTH OF TIME ON DIALYSIS (months) 32.6 67.6 LENGTH OF ILLNESS ( y e a r s ) 10.8 9.5 EMPLOYMENT p a r t - t i m e o r f u l l time 4 4 unemployed 4 4 MONTHS SINCE LAST EMPLOYMENT 39 42 66 The E x p e r i m e n t a l and C o n t r o l groups were e s s e n t i a l l y e q u i v a l e n t on a l l v a r i a b l e s e x c e p t t h e number o f males t o females i n each group, and t he average l e n g t h o f time on d i a l y s i s . The C o n t r o l group had s i g n i f i c a n t l y more males than f e m a l e s , and had a s i g n i f i c a n t l y g r e a t e r average number o f months on d i a l y s i s than d i d the E x p e r i m e n t a l group. The average l e n g t h o f time on d i a l y s i s d i f f e r s so g r e a t l y between t h e two groups c h i e f l y due t o the f a c t t h a t two p a t i e n t s i n t h e C o n t r o l group were " v e t e r a n s " w i t h 93 and 98 months on d i a l y s i s . In a d d i t i o n , t h e p a t i e n t w i t h t h e l e a s t e x p e r i e n c e on d i a l y s i s , s i x months, was a s s i g n e d t o the E x p e r i m e n t a l group i n t h e r a n d o m i z a t i o n p r o c e s s . When t h e s e t h r e e p a t i e n t s were removed from t h e c a l c u l a t i o n s , t h e means f o r each group were: E x p e r i m e n t a l - 37 months, C o n t r o l - 44 months. Moreover, both groups had known about and had been under m e d i c a l s u p e r v i s i o n f o r t h e i r c o n d i t i o n s f o r a comparable l e n g t h o f t i m e , which was 10.8 y e a r s f o r t he Ex p e r i m e n t a l group, and 9.5 y e a r s f o r t he C o n t r o l group. RESPONSES TO THE INTERVIEW 1. What k i n d s o f t h i n g s a r e i m p o r t a n t t o you? What a r e y o u r p l a n s f o r the f u t u r e ? S e v e n t y - f i v e p e r c e n t o f the p a t i e n t s s t a t e d t h a t work was i m p o r t a n t to them. T h i s was t h e most common r e s p o n s e , and was found i n both t h o s e p a t i e n t s who had a j o b , and i n t h o s e who d i d n o t . H a l f t he p a t i e n t s f e l t t h a t b e i n g a c t i v e was i m p o r t a n t ; and a c t i v i t y v e r s u s b e i n g c o n s i d e r e d as s i c k by o t h e r s was h i g h l y v a l u e d . S u r v i v a l i t s e l f was c o n s i d e r e d an im p o r t a n t g o a l , as r e f l e c t e d i n t h e s e s t a t e m e n t s : "I want t o l i v e as l o n g as I can," " I t ' s r e a l l y i m p o r t a n t f o r me t o l i v e l o n g enough t o see my nephews grow up," and "I want t o do as much as p o s s i b l e i n t h e time I have l e f t . " T r a n s p l a n t a t i o n was a f u t u r e hope f o r more than s i x t y p e r c e n t o f 67 the p a t i e n t s . F or t h e s e p a t i e n t s , o t h e r f u t u r e p l a n s seemed t o r e s t h e a v i l y on r e c e i v i n g t he t r a n s p l a n t , e s p e c i a l l y p l a n s f o r e x t e n s i v e t r a v e l . P a t i e n t s who were not ho p e f u l o f r e c e i v i n g a t r a n s p l a n t were more i n c l i n e d t o s t a t e t h a t t h e y hoped f o r i n c r e a s e d h e a l t h and energy t o a c c o m p l i s h t h e i r g o a l s such as g o i n g t o s c h o o l , w o r k i n g , and r a i s i n g a f a m i l y . 2. What t h i n g s a r e n e c e s s a r y f o r you t o do i n o r d e r t o r e a c h y o u r g o a l s o r p l a n s ? S i g n i f i c a n t l y , a l l p a t i e n t s r e a d i l y s t a t e d t h a t t h e i r h e a l t h was o f utmost importance t o them i f t h e y hoped t o a c h i e v e t h e i r g o a l s . 3. Which p e o p l e a r e most i m p o r t a n t t o you? S i x out o f t h e e i g h t p a t i e n t s mentioned members o f t h e i r immediate f a m i l i e s as t h e most i m p o r t a n t p e o p l e i n t h e i r l i v e s . Two p a t i e n t s s t a t e d t h a t t h e i r f r i e n d s were most i m p o r t a n t t o them. 4. What a r e y o u r d i e t and f l u i d r e s t r i c t i o n s ? P r o t e i n : The l a c k o f s p e c i f i c knowledge i n t h i s a r e a was e v i d e n t . S i x p a t i e n t s knew t h e i r p r o t e i n l i m i t s i n terms o f ounces o f meat per day, but had l i t t l e u n d e r s t a n d i n g o f h i g h and low q u a l i t y p r o t e i n , o r the p r o t e i n c o n t e n t i n foods o t h e r than meat. Two p a t i e n t s d i d not know t h e i r p r o t e i n r e s t r i c t i o n a t a l l . Sodium: The knowledge was b e t t e r i n t h i s a r e a , a l t h o u g h p a t i e n t s a s s o c i a t e d sodium al m o s t e x c l u s i v e l y w i t h s a l t . F o r t h e most p a r t , p a t i e n t s s t a t e d t h a t they were supposed t o a v o i d h i g h l y s a l t e d f o o d s such as smoked meat, f r a n k f u r t e r s , p i c k l e s and bacon, and t h a t t h e y s h o u l d not add s a l t t o t h e i r f o o d a t t h e t a b l e . P o tassium: A l l p a t i e n t s e x c e p t one a s s o c i a t e d p o t a s s i u m w i t h f r u i t . One p a t i e n t was not aware t h a t he s h o u l d a v o i d e x c e s s i v e i n t a k e o f f r u i t ; i n f a c t , he thought he s h o u l d e a t more f r u i t . Only one p a t i e n t noted t h a t 68 p o t a s s i u m was found i n meat and v e g e t a b l e s as w e l l as f r u i t . F l u i d : H a l f the p a t i e n t s s t a t e d t h a t t h e i r f l u i d s were r e s t r i c t e d and were a b l e t o s t a t e t h e i r a l l o w e d amounts. The o t h e r h a l f r e p l i e d t h a t t h e y were a l l o w e d f l u i d s " t o s a t i s f y t h i r s t " . However, a l l e x c e p t one p a t i e n t s a i d t h a t t h e y r e s t r i c t e d t h e i r f l u i d s i n o r d e r t o keep t h e i r w e i g h t g a i n s t o a minimum. I t s h o u l d be noted here t h a t a l l p a t i e n t s i n t h i s p a r t i c u l a r u n i t r e c e i v e s i m i l a r i n s t r u c t i o n s r e g a r d i n g t h e i r d i e t and f l u i d r e s t r i c t i o n s . T here a r e two s p e c i a l l y t r a i n e d r e n a l d i e t i t i a n s who p r o v i d e each new p a t i e n t w i t h thorough i n s t r u c t i o n s on the d i e t , h i s s p e c i f i c r e s t r i c t i o n s , and meal p l a n n i n g . Each p a t i e n t r e c e i v e s a d i e t manual, complete w i t h h i s own d i e t and f l u i d r e s t r i c t i o n s r e c o r d e d , menus, and f o o d exchange l i s t s . 5. What d i f f i c u l t i e s , i f any, have you had i n t h e p a s t w i t h y o u r r e s t r i c t i o n s ? H a l f the p a t i e n t s c l a i m e d n ever t o have had problems a s ' a r e s u l t o f non-adherence w i t h t h e i r r e s t r i c t i o n s . Two p a t i e n t s r e c a l l e d a t l e a s t one e p i s o d e o f pulmonary edema and f l u i d o v e r l o a d , and t h r e e p a t i e n t s s a i d t h a t they had had problems w i t h v e r y h i g h p o t a s s i u m on o c c a s i o n . One p a t i e n t s a i d he had problems t a k i n g the phosphate-b i n d i n g m e d i c a t i o n . 6. What p a r t ( s ) o f the r e s t r i c t i o n s do you f i n d t h e most d i f f i c u l t ? H a l f the p a t i e n t s s t a t e d t h a t t h e y had the most d i f f i c u l t y w i t h the f l u i d r e s t r i c t i o n s . Two p a t i e n t s found t h e i r p o t a s s i u m r e s t r i c t i o n the most d i f f i c u l t t o adhere t o , and two p a t i e n t s c l a i m e d no problems a t a l l w i t h the r e s t r i c t i o n s . 7. How much weig h t do you u s u a l l y g a i n between d i a l y s e s ? Seven o f the e i g h t p a t i e n t s r e p o r t e d t h a t t h e i r w e i g h t g a i n s v a r i e d w i t h the number o f days between d i a l y s e s , e s p e c i a l l y i f the t h r e e 69 day span was o v e r t he weekend. A l l p a t i e n t s s t a t e d t h a t t h e y u s u a l l y g a i n e d more weight o v e r t he weekend. Weight g a i n s v a r i e d from as l i t t l e as h a l f . a k i l o g r a m i n two days t o as much as two k i l o g r a m s o v e r a weekend. 8. What i s the s a f e range f o r potassium? What happens when t h e po t a s s i u m . l e v e l i s v e r y high? T h r e e p a t i e n t s knew what t h e s a f e range f o r p o t a s s i u m was, w h i l e t h r e e knew o n l y t h a t a p o t a s s i u m l e v e l o f s i x o r more was h i g h and c o n s i d e r e d dangerous. A l l but one p a t i e n t i d e n t i f i e d t h e danger o f " h e a r t a t t a c k " as the p o s s i b l e outcome o f a v e r y h i g h p o t a s s i u m l e v e l . 9. What was y o u r p o t a s s i u m l e v e l t h e l a s t time you had i t t e s t e d ? Do you t r y t o "aim" f o r a c e r t a i n p o t a s s i u m l e v e l ? I f so, what? H a l f t he p a t i e n t s knew what t h e i r p o t a s s i u m l e v e l was t h e l a s t time i t was t e s t e d , and t h e o t h e r h a l f o f the p a t i e n t s s a i d t h a t e i t h e r t h e y had not been t o l d t h e r e s u l t , o r e l s e t h e y c o u l d not remember. Two p a t i e n t s s a i d t h e y t r y t o "aim" f o r a s p e c i f i c p r e - d i a l y s i s p o t a s s i u m l e v e l , and a n o t h e r two s a i d t h a t t h e y t r y t o keep t h e i r p o t a s s i u m l e v e l down by m i n i m i z i n g t h e i r i n t a k e o f h i g h - p o t a s s i u m f o o d s . H a l f t he p a t i e n t s s a i d t h e y make no r e a l e f f o r t t o c o n t r o l t h e i r p o t a s s i u m l e v e l s . 10. Do you t r y t o "aim" f o r a c e r t a i n weight g a i n i n between d i a l y s e s ? I f s o, what? H a l f t h e p a t i e n t s c l a i m e d t h e y d i d not t r y t o "aim" f o r a s p e c i f i c w e i g h t g a i n between d i a l y s e s , o r t o keep t h e i r weight g a i n s below a c e r t a i n maximum, a l t h o u g h o n l y one p a t i e n t a d m i t t e d t o d r i n k i n g a l l t h a t he wanted t o . The o t h e r s s a i d t h a t t h e y weighed themselves a t home and t r i e d t o keep t h e i r w e i g h t g a i n s down. 11. What i s y o u r d r y weight? A l l o f the p a t i e n t s knew t h e i r d r y we i g h t , a l t h o u g h one p a t i e n t 70 d i s a g r e e d w i t h the d o c t o r on the e x a c t f i g u r e , c l a i m i n g t h a t i t was too low. 12. Do you have y o u r own k i d n e y s ? What i s y o u r e s t i m a t e d d a i l y u r i n e o u t p u t ? The amount o f u r i n e o u t p u t d i d not appear t o i n f l u e n c e a p a t i e n t ' s d i f f i c u l t y w i t h the f l u i d r e s t r i c t i o n s . Of the two p a t i e n t s w i t h b i l a t e r a l n e p h r e c t o m i e s , one had d i f f i c u l t i e s w i t h e x c e s s i v e weight g a i n s , and t h e o t h e r d i d n o t . Of the two p a t i e n t s w i t h l e s s t h a t 200 m i l l i l i t e r s per day o u t p u t , one c l a i m e d e x c e s s i v e weight g a i n s , and the o t h e r s a i d he had no problems w i t h h i s weight. N e i t h e r o f t h e two p a t i e n t s who s a i d they c o n t i n u e d t o have a l m o s t normal u r i n e o u t p u t s had d i f f i c u l t y w i t h e x c e s s i v e weight g a i n s between d i a l y s e s , however. RESULTS OF THE BALANCE SHEET PROCEDURE The r e s p o n s e s t o t h e B a l a n c e Sheet Procedure w i l l be r e p o r t e d i n terms o f the a n t i c i p a t e d consequences o f a d h e r i n g t o the d i e t and f l u i d r e s t r i c t i o n s , and then the a n t i c i p a t e d consequences o f not a d h e r i n g to t h e r e s t r i c t i o n s , w i t h i n t h e g a i n s and l o s s e s format a l r e a d y d e s c r i b e d . The a n t i c i p a t e d consequences o f a d h e r i n g t o t h e d i e t were: GAINS TO SELF: A l l p a t i e n t s i d e n t i f i e d " b e t t e r p h y s i c a l h e a l t h " as a r e s u l t o f adherence t o the d i e t and f l u i d r e s t r i c t i o n s . T h i s was some-times e x p r e s s e d as "a l a c k o f symptoms" o r problems, such a s , "no s h o r t -ness o f b r e a t h " , "not b e i n g so t i r e d " and "no problems w h i l e on d i a l y s i s " . S i g n i f i c a n t l y , a l l p a t i e n t s were a b l e t o a s s o c i a t e t h e i r l o n g - t e r m g o a l s or t he accomplishment o f i m p o r t a n t g o a l s i n l i f e w i t h adherence t o t h e i r d i e t and f l u i d r e s t r i c t i o n s as i s shown i n such s t a t e m e n t s a s , "I would be b e t t e r a b l e t o do my j o b " , "I would have more energy t o do t h i n g s t h a t a r e i m p o r t a n t t o me". 71 GAINS TO SIGNIFICANT OTHERS: Seven p a t i e n t s i d e n t i f i e d t he i n c r e a s e d enjoyment o f f a m i l y members and f r i e n d s as a p o s i t i v e r e s u l t o f a d h e r i n g t o t h e r e s t r i c t i o n s . T h i s was e x p r e s s e d i n such s t a t e m e n t s a s , "my f a m i l y e n j o y s b e i n g around me when I'm w e l l " , " I f e e l l i k e d o i n g t h i n g s f o r my f a m i l y when I'm f e e l i n g w e l l , and I'm n i c e r t o them". F i v e p a t i e n t s s a i d t h a t t h e i r f a m i l i e s would worry l e s s i f th e y f o l l o w e d t h e i r d i e t s . Four p a t i e n t s s t a t e d t h a t f r i e n d s and f a m i l y would b e n e f i t as a r e s u l t o f what t h e p a t i e n t c o u l d do f o r them i f he f e l t w e l l , such as h e l p i n g around the house, p a r t i c i p a t i n g i n s o c i a l a c t i v i t i e s , and p r o v i d i n g f o r th e f a m i l y . One p a t i e n t , f o r whom h i s a b i l i t y t o work was v e r y i m p o r t a n t , i d e n t i f i e d h i s boss as a s i g n i f i c a n t o t h e r person who would b e n e f i t as a r e s u l t o f the p a t i e n t ' s a b i l i t y t o adhere t o t h e d i e t and f l u i d r e s t r i c t i o n s as he would be b e t t e r a b l e t o do h i s j o b i f he f e l t w e l l . APPROVAL FROM SIGNIFICANT OTHERS: A l l p a t i e n t s s t a t e d t h a t f a m i l y and f r i e n d s approve o f them when t h e y adhere t o t h e i r r e s t r i c t i o n s , and t h e p a t i e n t s f e l t p o s i t i v e f e e l i n g s as a r e s u l t o f t h i s a p p r o v a l . One p a t i e n t s a i d t h a t h i s boss and co-workers admired h i s w i l l - p o w e r and p r a i s e d him f o r h i s a b i l i t y t o s t i c k t o h i s d i e t . A n o t h e r p a t i e n t i d e n t i f i e d t h e nu r s e s i n t h e u n i t as s i g n i f i c a n t o t h e r s who would approve o f h i s a b i l i t y t o adhere t o the r e s t r i c t i o n s . SELF-APPROVAL: A l l p a t i e n t s d e s c r i b e d an i n c r e a s e d f e e l i n g o f s e l f -esteem and p r i d e i n t h e i r a b i l i t y t o c o n t r o l t h e i r i m p u l s e s when t h e y adhered t o t h e i r r e s t r i c t i o n s . LOSSES TO SELF: A l l p a t i e n t s but one were a b l e t o admit t h e l o s s o f p l e a s u r e and g r a t i f i c a t i o n o f e a t i n g and d r i n k i n g what th e y wanted and as much as th e y wanted. One p a t i e n t s a i d t h a t t h e d i e t was " b o r i n g " and t a s t e d " f l a t " and u n i n t e r e s t i n g . Three p a t i e n t s s a i d t h a t t h e i r 72 l i v e s were r e s t r i c t e d because o f t h e d i e t . They c o u l d not p a r t i c i p a t e : i n some s o c i a l f u n c t i o n s , o r e l s e d i d not e n j o y t hemselves as much a t t h e s e o c c a s i o n s when th e y f o l l o w e d t h e i r r e s t r i c t i o n s . LOSSES TO SIGNIFICANT OTHERS: H a l f t he p a t i e n t s acknowledged t h a t t h e s p e c i a l d i e t c r e a t e d more work f o r the f a m i l y member r e s p o n s i b l e f o r p r e p a r i n g t h e meals, and t h r e e p a t i e n t s added t h a t t he r e s t o f t h e f a m i l y a l s o s u f f e r e d as a r e s u l t o f t h e f a c t t h a t some f a v o u r i t e d i s h e s were no l o n g e r p r e p a r e d because t h e p a t i e n t c o u l d not e a t them. Two p a t i e n t s f e l t t h a t f a m i l y members r e f r a i n e d from e a t i n g f o r b i d d e n foods i n f r o n t o f t h e p a t i e n t , and a n o t h e r p a t i e n t noted t h a t f r i e n d s o f t e n were d i s a p p o i n t e d i f she d i d not e a t f o o d they had p r e p a r e d f o r her; and i n t h i s way her adherence t o the d i e t r e s u l t e d i n a l o s s o f ^ p l e a s u r e f o r o t h e r s . DISAPPROVAL FROM SIGNIFICANT OTHERS: O n l y t h r e e p a t i e n t s f e l t t h a t t h e r e was some d i s a p p r o v a l from s i g n i f i c a n t o t h e r s i f t h e p a t i e n t d i d f o l l o w h i s d i e t , but t h i s was u s u a l l y r e l a t e d t o a s p e c i a l o c c a s i o n ^ o r a n i g h t out w i t h f r i e n d s . One p a t i e n t f e l t t h a t h i s f a m i l y members would d i s a p p r o v e o f h i s adherence t o t h e d i e t i f i t i n t e r f e r e d w i t h t h e meals t h a t t he r e s t o f t h e f a m i l y had t o e a t , and t h i s might cause them t o r e s e n t t h e p a t i e n t . SELF-DISAPPROVAL: Two p a t i e n t s s a i d they would d i s a p p r o v e o f c a r r y i n g the r e s t r i c t i o n s t o o f a r ; e i t h e r i n t e l l i n g everyone about i t , o r t a l k i n g a t g r e a t l e n g t h about what foods t h e y c o u l d not have. As one p a t i e n t s a i d , "I don't want t o make a c a r e e r out o f i t ! " The a n t i c i p a t e d consequences o f hot . a d h e r i n g - t o the r e s t r i c t i o n s were: GAINS TO SELF: Only f o u r p a t i e n t s were a b l e t o i d e n t i f y any g a i n s t o s e l f t h a t c o u l d o c c u r when th e y d i d not f o l l o w t h e i r d i e t and f l u i d r e s t r i c t i o n s . A l l o f t h e s e s a i d t h a t t he t a s t e and s e n s o r y s a t i s f a c t i o n 73 o f e a t i n g f a v o u r i t e f o o d s was a s i g n i f i c a n t g a i n when th e y d i d go o f f t h e i r d i e t s . Three p a t i e n t s a s s o c i a t e d t h i s w i t h e a t i n g on a s p e c i a l o c c a s i o n , o r g o i n g out t o a r e s t a u r a n t . These p a t i e n t s s t a t e d t h a t i t was v i r t u a l l y i m p o s s i b l e to adhere t o t h e r e s t r i c t i o n s when t h e y were not a t home. GAINS TO SIGNIFICANT OTHERS: Two p a t i e n t s s t a t e d t h a t meal p r e p a r a t i o n was much e a s i e r when th e y d i d not adhere t o t h e i r r e s t r i c t i o n s , as a member o f the f a m i l y d i d not have t o cook a s p e c i a l meal f o r the p a t i e n t . Three p a t i e n t s p o i n t e d out t h a t f r i e n d s and f a m i l y c o u l d b e t t e r e n j o y an o c c a s i o n a l meal a t a r e s t a u r a n t o r a s p e c i a l d i n n e r when th e y d i s r e g a r d e d t h e i r r e s t r i c t i o n s and a t e w i t h t he r e s t . APPROVAL FROM SIGNIFICANT OTHERS: F i v e p a t i e n t s a d m i t t e d a c e r t a i n a p p r o v a l from s i g n i f i c a n t o t h e r s when t h e y went o f f t h e i r d i e t s f o r a s p e c i a l o c c a s i o n . A t times f r i e n d s and f a m i l y even encouraged t h i s b e h a v i o r , " I t won't h u r t , j u s t t h i s once". SELF-APPROVAL: Only one p a t i e n t s t a t e d t h a t he f e l t proud o f h i m s e l f f o r not a d h e r i n g t o t h e d i e t and f l u i d r e s t r i c t i o n s as p r e s c r i b e d by h i s d o c t o r . T h i s p a t i e n t s t a t e d t h a t he was g i v e n a v e r y s t r i c t d i e t , and by e x p e r i m e n t i n g w i t h i n c r e a s e d f o o d and f l u i d i n t a k e , he found t h a t he c o u l d t o l e r a t e g r e a t e r amounts than he was a l l o w e d i n t h e d i e t , w i t h o u t untoward symptoms o r an i n c r e a s e i n h i s b l o o d c h e m i s t r i e s . He was t h e r e f o r e proud o f h a v i n g e s t a b l i s h e d h i s own p a t t e r n o f non-adherence t o h i s d i e t and f l u i d r e s t r i c t i o n s . LOSSES TO SELF: Almost a l l p a t i e n t s i d e n t i f i e d l o s s o f h e a l t h and the e x p e r i e n c e o f u n p l e a s a n t symptoms, such as s h o r t n e s s o f b r e a t h , f e e l i n g t i r e d , l e t h a r g i c , and an i n a b i l i t y t o do t h i n g s , as a r e s u l t o f non-adherence t o t h e r e s t r i c t i o n s . Three p a t i e n t s i d e n t i f i e d l o n g - t e r m p h y s i c a l d i f f i c u l t i e s t h a t c o u l d r e s u l t from non-adherence t o t h e 74 r e s t r i c t i o n s , such as h y p e r t e n s i o n , which c o u l d l e a d t o a s t r o k e ; v i s u a l and c a r d i a c problems. S i x p a t i e n t s i d e n t i f i e d t h e l o s s o f i m p o r t a n t l i f e g o a l s as a p o s s i b l e r e s u l t o f d i e t a r y non-adherence i f t h i s b e h a v i o r r e s u l t e d i n i l l - h e a l t h , such as t h e l o s s o f t i m e at,work o r permanent l o s s o f t h e i r j o b , not b e i n g a b l e t o t r a v e l , and g e n e r a l d e c r e a s e d enjoyment i n l i f e as a r e s u l t o f i l l - h e a l t h . LOSSES TO SIGNIFICANT OTHERS: F i v e p a t i e n t s s a i d t h a t t h e i r f a m i l y would worry about the p o s s i b l e consequences f o r the p a t i e n t i f he d i d n o t f o l l o w t h e d i e t . T h i s worry would be more i n t e n s e i f t h e p a t i e n t e x p e r i e n c e d i l l - h e a l t h o r u n c o m f o r t a b l e symptoms, such as nausea and v o m i t i n g o r s h o r t n e s s o f b r e a t h . H a l f the p a t i e n t s mentioned t h a t t h e i r f a m i l y and f r i e n d s would s u f f e r t h e l o s s o f the p a t i e n t ' s company i f i l l - h e a l t h p r e v e n t e d him from v i s i t i n g o r s o c i a l i z i n g w i t h them i n h i s u s u a l manner. Two p a t i e n t s s t a t e d t h a t t h e i r f a m i l i e s would s u f f e r i f i l l h e a l t h p r e v e n t e d them from h e l p i n g around t h e house o r p r o v i d i n g f o r t h e i r f a m i l i e s . One p a t i e n t a g a i n mentioned the l o s s to h i s boss and co-workers which would o c c u r i f i l l - h e a l t h p r e v e n t e d him from d o i n g h i s j o b , o r i f i t f o r c e d him t o r e t i r e a l t o g e t h e r . DISAPPROVAL FROM SIGNIFICANT OTHERS: Seven p a t i e n t s s t a t e d t h a t t h e i r f a m i l i e s and f r i e n d s would d i s a p p r o v e o f a c o n t i n u o u s abuse o f t h e d i e t and f l u i d r e s t r i c t i o n s . P a t i e n t s f e l t t h a t the d i s a p p r o v a l would stem from a d i s a p p o i n t m e n t i n t h e p a t i e n t ' s l a c k o f c o n t r o l o v e r h i s e a t i n g a n d d r i n k i n g h a b i t s , as w e l l as worry o v e r t h e n e g a t i v e consequences t h a t t h i s b e h a v i o r might i n c u r . SELF-DISAPPROVAL: A l l p a t i e n t s s t a t e d t h a t they would d i s a p p r o v e o f t h e i r b e h a v i o r i f they were not a b l e to adhere t o t h e i r r e s t r i c t i o n s a t a l l , p a r t i c u l a r l y i f t h e y were i l l as a r e s u l t . They f e l t t h a t t h i s b e h a v i o r 75 would make them angry a t t h e i r l a c k o f s e l f - c o n t r o l , d i s a p p o i n t e d i n th e m s e l v e s , and would lower t h e i r s e l f - e s t e e m . GOAL SETTING P a t i e n t s demonstrated t h e i r a b i l i t y t o make t h e i r own d e c i s i o n s and t o s e t r e a l i s t i c g o a l s . None o f the p a t i e n t s had g r e a t d i f f i c u l t y i n e s t a b l i s h i n g ^ h i s . g o a l s . F o r each o f the dependent v a r i a b l e s , t h e g o a l s e s t a b l i s h e d by t h e p a t i e n t s were as f o l l o w s : P otassium - The g o a l s f o r p r e - d i a l y s i s serum p o t a s s i u m ranged from a d e s i r e d maximum o f 5.0 m i l l i - E q u i v a l e n t s per"1 i t e r ' ( m E q / L ) to 6.0 mEq/L. F l u i d - The g o a l s f o r weight g a i n s between d i a l y s e s were s t a t e d i n ki l o g r a m s per day o r e l s e . t w o g o a l s w e r e . s t a t e d ; , one d e s i r e d weight g a i n f o r a two day p e r i o d , and a n o t h e r f o r a t h r e e day p e r i o d . G o als f o r weigh t g a i n s between d i a l y s e s ranged from a maximum g a i n i n two days o f 0.5 k i l o g r a m (Kg.) t o a maximum g a i n i n t h r e e days o f 2.0 Kg. Two p a t i e n t s r e v i s e d t h e i r g o a l s f o r weight g a i n between d i a l y s e s d u r i n g t h e i n t e r v e n t i o n , one a f t e r ' f o u r d i a l y s e s and one a f t e r s i x d i a l y s e s . Both p a t i e n t s found t h a t t h e i r g o a l s were u n r e a l i s t i c and i n c r e a s e d t h e i r d e s i r e d maximum weight g a i n between d i a l y s e s . F o r both t h e s e p a t i e n t s , t he new goal s t i l l r e p r e s e n t e d a c h a l l e n g e ; t h a t i s , the new goal was a f i g u r e lower than t he amount th e y u s u a l l y g a i n e d , and moreover, was a weight g a i n a t which th e y f e l t c o m f o r t a b l e . The above r e p o r t s a r e t h e p r e s e n t a t i o n o f the i n i t i a l i n t e r a c t i o n i n t h e i n t e r v e n t i o n . The next s e c t i o n d e a l s w i t h t h e r e s u l t s o f t h e t e s t i n g o f t h e hypotheses. T h i s i s f o l l o w e d by the a n a l y s i s o f the data i n r e l a t i o n t o the a d d i t i o n a l r e s e a r c h q u e s t i o n s . 76 HYPOTHESES TESTING H y p o t h e s i s 1. s t a t e d t h a t t h e r e w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o f l u i d r e s t r i c t i o n s between h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n u t i l i z i n g g o a l s e t t i n g i n a d e c i s i o n - m a k i n g " • model and h e m o d i a l y s i s p a t i e n t s who were not exposed t o the i n t e r v e n t i o n as measured by between d i a l y s e s w e i g h t g a i n s . The mean between d i a l y s e s w e i g h t g a i n s , i n k i l o g r a m s , o b t a i n e d by each group d u r i n g t h e i n t e r v e n t i o n phase and the r e s u l t s o f t h e t - t e s t f o r t h e s e d a t a a r e shown i n T a b l e I I . A l t h o u g h the E x p e r i m e n t a l group tended t o g a i n l e s s than t h e C o n t r o l group between d i a l y s e s , the d i f f e r e n c e i s small and s t a t i s t i c a l l y i n s i g n i f i c a n t . On t h e b a s i s o f t h e s e d a t a , t h e N u l l H y p o t h e s i s was a c c e p t e d : t h e r e was no s i g n i f i c a n t d i f f e r e n c e between t h e two groups i n between d i a l y s e s weight g a i n s d u r i n g t h e I n t e r v e n t i o n Phase. TABLE II MEAN BETWEEN DIALYSES WEIGHT GAINS INTERVENTION PHASE EXPERIMENTAL AND CONTROL GROUPS EXPERIMENTAL GROUP CONTROL GROUP t-TEST 1.01 Kg. 1.13 Kg. t= 0.63 df= 14 not s i g n i f i c a n t 77 H y p o t h e s i s 2. s t a t e d t h a t t h e r e w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o the d i e t r e s t r i c t i o n s between d i a l y s i s p a t i e n t s exposed to a n u r s i n g i n t e r v e n t i o n u t i l i z i n g goal s e t t i n g i n a d e c i s i o n - m a k i n g model and h e m o d i a l y s i s p a t i e n t s who were not exposed t o the i n t e r v e n t i o n as measured by p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . The mean p r e - d i a l y s i s serum po t a s s i u m l e v e l , i n m i l l i - E q u i v a l e n t s per l i t e r , o b t a i n e d by each group d u r i n g t he I n t e r v e n t i o n Phase, and t h e r e s u l t s o f t h e t - t e s t f o r t h e s e data a r e shown i n T a b l e I I I . The Ex p e r i m e n t a l g r o u p .. o b t a i n e d a s i g n i f i c a n t l y lower mean p r e - d i a l y s i s serum p o t a s s i u m l e v e l d u r i n g t he I n t e r v e n t i o n Phase than t h e C o n t r o l group. T h i s d i f f e r e n c e i s s i g n i f i c a n t beyond t h e 0.025 l e v e l o f s i g n i f i c a n c e i n a o n e - t a i l e d t e s t . The N u l l H y p o t h e s i s was t h e r e f o r e r e j e c t e d , and t h e A l t e r n a t i v e h y p o t h e s i s e t h a t t h e p r e - d i a l y s i s serum pot a s s i u m l e v e l s w i l l be s i g n i f i c a n t l y lower f o r h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n which u t i l i z e d goal s e t t i n g i n a d e c i s i o n - m a k i n g model than f o r h e m o d i a l y s i s p a t i e n t s not exposed t o the i n t e r v e n t i o n , was a c c e p t e d . TABLE I I I MEAN PRE-DIALYSIS SERUM POTASSIUM LEVELS INTERVENTION PHASE EXPERIMENTAL AND CONTROL GROUPS EXPERIMENTAL GROUP CONTROL GROUP "t-TEST 4.84 mEq/L 5.37 mEq/L t= 2.47 df= 14 p< 0.025 78 In o r d e r t o examine t h e changes t h a t o c c u r r e d i n between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s i n the two groups t h r o u g h o u t the s t u d y , the data f o r each group were compared i n a l l t h r e e phases. The mean v a l u e s f o r between d i a l y s e s weight g a i n s o b t a i n e d by the E x p e r i m e n t a l and C o n t r o l group p a t i e n t s :in a l l t h r e e phases a r e shown i n T a b l e IV. For between d i a l y s e s weight g a i n s , t h e r e were no s i g n i f i c a n t d i f f e r e n c e s between t h e E x p e r i m e n t a l and C o n t r o l groups i n any phase. Thus t h e two groups were e s s e n t i a l l y t h e same i n t h e i r a verage weight g a i n s b e f o r e t h e i n t e r v e n t i o n , and d i d not s u b s t a n t i a l l y a l t e r t h e i r p a t t e r n s d u r i n g o r a f t e r the i n t e r v e n t i o n . I t i s n o t e d , however, t h a t the E x p e r i m e n t a l group's average weight g a i n d e c r e a s e d s l i g h t l y d u r i n g the I n t e r v e n t i o n Phase and remained a t t h a t l e v e l i n t h e Follow-Up Phase, w h i l e the C o n t r o l group's average weight g a i n between d i a l y s e s dropped d u r i n g the I n t e r v e n t i o n Phase and r e t u r n e d t o the Pre-I n t e r v e n t i o n l e v e l i n the Follow-Up Phase. TABLE IV BETWEEN DIALYSES WEIGHT GAINS PRE-INTERVENTION, INTERVENTION, AND FOLLOW-UP PHASES EXPERIMENTAL AND CONTROL GROUPS PHASE EXPERIMENTAL CONTROL t-TEST  PRE-INTERVENTION 1.12 Kg. 1.24 Kg. t= 0.43 df= 14 not s i g n i f i c a n t INTERVENTION 1.01 Kg. 1.13 Kg. t= 0.63 df= 14 not s i g n i f i c a n t FOLLOW-UP 1.01 Kg. 1.20 Kg. t= 0.95 df= 13 not s i g n i f i c a n t 79 The mean v a l u e s f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s o b t a i n e d by t he E x p e r i m e n t a l and C o n t r o l group p a t i e n t s i n a l l t h r e e phases a r e shown i n T a b l e V. While t h e r e was no s i g n i f i c a n t d i f f e r e n c e i n p r e -d i a l y s i s serum pot a s s i u m l e v e l s between t h e E x p e r i m e n t a l and C o n t r o l groups i n the P r e - I n t e r v e n t i o n Phase, a d i f f e r e n c e s i g n i f i c a n t a t the 0.025 l e v e l was o b t a i n e d f o r t h i s v a r i a b l e i n the I n t e r v e n t i o n Phase. The average p r e - d i a l y s i s serum p o t a s s i u m l e v e l o b t a i n e d by the E x p e r i -mental group i n c r e a s e d i n the Follow-Up Phase, a l t h o u g h not t o the P r e - I n t e r v e n t i o n l e v e l , and no s i g n i f i c a n t d i f f e r e n c e was found between t h e E x p e r i m e n t a l and C o n t r o l groups on t h i s v a r i a b l e i n the Follow-Up Phase. The mean p r e - d i a l y s i s serum p o t a s s i u m l e v e l o b t a i n e d by the C o n t r o l group remained r e l a t i v e l y c o n s t a n t t h r o u g h o u t a l l t h r e e phases. TABLE V PRE-DIALYSIS SERUM POTASSIUM PRE-INTERVENTION, INTERVENTION, AND FOLLOW-UP PHASES EXPERIMENTAL AND CONTROL GROUPS PHASE EXPERIMENTAL CONTROL t-TEST PRE-INTERVENTION 5.13,mEq/L 5.41 mEq/L t= 1.40 df= 14 not s i g n i f i c a n t INTERVENTION 4.84 mEq/L 5.37 mEq/L t= 2.47 df= 14 p * 0.025 FOLLOW-UP 4.92 mEq/L 5.35 mEq/L t= 1.45 df= 13 not s i g n i f i c a n t 80 In o r d e r t o d e t e r m i n e whether t h e r e were s i g n i f i c a n t changes w i t h i n each group between phases, t h e d a t a f o r between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s f o r each group were compared from P r e - I n t e r v e n t i o n t o I n t e r v e n t i o n Phases, from I n t e r v e n t i o n t o Follow-Up Phases, and from P r e - I n t e r v e n t i o n t o Follow-Up Phases. The r e s u l t s o f t h i s a n a l y s i s f o r between d i a l y s e s weight g a i n s i s r e p o r t e d i n T a b l e V I , and f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s i n T a b l e V I I . Small changes i n between d i a l y s e s w e i g h t g a i n s a r e noted f o r both groups between phases, but s t a t i s t i c a l a n a l y s i s shows t h e s e changes t o be i n s i g n i f i c a n t f o r a l l comparisons. The average w e i g h t g a i n s between d i a l y s e s o b t a i n e d by both the E x p e r i m e n t a l and C o n t r o l group p a t i e n t s remained r e l a t i v e l y unchanged t h r o u g h o u t a l l phases o f t h e s t u d y . F o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s , however, a s i g n i f i c a n t d i f f e r e n c e i s o b s e r v e d i n t h e E x p e r i m e n t a l group from the P r e - I n t e r v e n t i o n Phase t o the I n t e r v e n t i o n Phase, i n d i c a t i n g t h a t between t h e s e two phases, t h e E x p e r i m e n t a l group p a t i e n t s e x p e r i e n c e d a s i g n i f i c a n t drop i n t h e i r average p r e - d i a l y s i s serum p o t a s s i u m l e v e l ; A l t h o u g h t h e r e was an i n s i g n i f i c a n t i n c r e a s e i n the p r e - d i a l y s i s serum p o t a s s i u m l e v e l between the I n t e r v e n t i o n and Follow-Up Phases i n t h e E x p e r i m e n t a l group, t h i s i n c r e a s e negated t h e s i g n i f i c a n t change o b s e r v e d between the f i r s t two phases, and t h e r e i s no s i g n i f i c a n t d i f f e r e n c e o b s e r v e d between the P r e - I n t e r v e n t i o n and Follow-Up Phases f o r t h i s group. The C o n t r o l group e x p e r i e n c e d o n l y s l i g h t changes i n t h e i r a v e rage p r e - d i a l y s i s serum p o t a s s i u m l e v e l s i n each phase, and none o f t h e s e changes i s s i g n i f i c a n t . TABLE VI BETWEEN DIALYSES WEIGHT GAINS BETWEEN PHASES EXPERIMENTAL AND CONTROL GROUPS GROUP PHASE.1 PHASE 2 t-TEST PHASE 2 PHASE 3 t-TEST PHASE 1 PHASE 3 t-TEST EXPERIMENTAL 1.12 Kg. 1.01 Kg. t=0.67 df=7w N/S 1.01 Kg. 1.01 Kg. t=0.05 df=7 N/S 1.12 Kg. 1.01 Kg. t=0.67 df=7 N/S CONTROL 1.24 Kg. 1.13 Kg. t=0.08 df=7 N/S 1.13 Kg. 1.20 Kg. t=0.44 df=6 N/S 1.24 Kg. 1.20 Kg. t=0.45 df=6 N/S PHASE 1 P r e - I n t e r v e n t i o n Phase * PHASE 2 I n t e r v e n t i o n Phase N/S = not s i g n i f i c a n t PHASE 3 Follow-Up Phase TABLE VII PRE-DIALYSIS SERUM POTASSIUM BETWEEN PHASES EXPERIMENTAL AND CONTROL GROUPS GROUP PHASE 1 PHASE 2 t-TEST PHASE 2 PHASE 3 t-TEST PHASE 1 PHASE 3 t-TEST EXPERIMENTAL 5.13 mEq/L 4.84 mEq/L t=2.32 df=7 p<'0.05 4.84 mEq/L 4.92 mEq/L t=0.41 df=7 * N/S 5.13 mEq/L 4.92 mEq/L t= l . 1 3 df=7 N/S CONTROL 5.47 mEq/L 5.37 mEq/L t=0.74 df=7 N/S 5.37 mEq/L 5.35 mEq/L t=0.10 df=6 N/S 5.47 mEq/L 5.35 mEq/L t=0.57 df=6 N/S PHASE 1 P r e - I n t e r v e n t i o n Phase PHASE 2 I n t e r v e n t i o n Phase PHASE 3 Follow-Up Phase N/S = not s i g n i f i c a n t 83 In summary, the dat a s u p p o r t t he a c c e p t a n c e o f the f i r s t h y p o t h e s i s , and r e j e c t i o n o f the second h y p o t h e s i s . The A l t e r n a t i v e h y p o t h e s i s t o H y p o t h e s i s 2, t h a t t he p r e - d i a l y s i s serum p o t a s s i u m l e v e l s w i l l be s i g n i f i c a n t l y lower f o r h e m o d i a l y s i s p a t i e n t s exposed to a n u r s i n g i n t e r v e n t i o n which u t i l i z e d goal s e t t i n g i n a d e c i s i o n -making model than f o r h e m o d i a l y s i s p a t i e n t s not exposed t o the i n t e r v e n t i o n , was a c c e p t e d . E x a m i n a t i o n o f the d a t a f o r between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s w i t h i n each group between phases, and between groups i n each phase, r e v e a l t h a t the E x p e r i m e n t a l and C o n t r o l groups were e s s e n t i a l l y t he same i n t h e s e two v a r i a b l e s p r i o r t o t he i n t e r v e n t i o n , and t h a t no s i g n i f i c a n t d i f f e r e n c e s were found between t h e two groups i n t h e Follow-Up Phase. During t he I n t e r v e n t i o n Phase, t he E x p e r i m e n t a l group o b t a i n e d a s i g n i f i c a n t l y lower average p r e - d i a l y s i s serum p o t a s s i u m l e v e l than the C o n t r o l group; but no s i g n i f i c a n t d i f f e r e n c e was found f o r between d i a l y s e s weight g a i n s . P r e - d i a l y s i s serum p o t a s s i u m l e v e l s showed a s i g n i f i c a n t d e c r e a s e from the P r e - I n t e r v e n t i o n t o t h e I n t e r v e n t i o n Phases f o r the E x p e r i m e n t a l group, but d u r i n g t he Follow-Up Phase t he average p r e - d i a l y s i s serum p o t a s s i u m l e v e l i n c r e a s e d , so t h a t no s i g n i f i c a n t d i f f e r e n c e was o b s e r v e d between the P r e - I n t e r v e n t i o n and Follow-Up Phases. A l l o t h e r between phase d i f f e r e n c e s were found t o be i n s i g n i f i c a n t . The i m p l i c a t i o n s o f t h e s e f i n d i n g s a r e d i s c u s s e d i n C h a p t e r V. The next s e c t i o n r e p o r t s t h e r e s u l t s o f the a n a l y s i s o f the dat a i n r e l a t i o n t o t h e a d d i t i o n a l r e s e a r c h q u e s t i o n s . 84 DATA ANALYSIS—ADDITIONAL RESEARCH QUESTIONS The d a t a a n a l y s i s w i l l be p r e s e n t e d i n terms o f each s p e c i f i c q u e s t i o n posed: 1. Were the r e s u l t s o b t a i n e d f o r between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s s i g n i f i c a n t l y r e l a t e d t o t h e demographic v a r i a b l e s i n any phase? The demographic v a r i a b l e s o f the group as a whole were compared w i t h t h e between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s i n each phase. As shown i n T a b l e V I I I , t h e r e were no s i g n i f i c a n t r e l a t i o n s h i p s between t h e dependent v a r i a b l e s and age, l e n g t h o f time on d i a l y s i s and e d u c a t i o n , and no s i g n i f i c a n t d i f f e r e n c e s between m a r r i e d and unmarried o r employed and unemployed p a t i e n t s i n t h e dependent v a r i a b l e s . 2. Were the E x p e r i m e n t a l p a t i e n t s s u c c e s s f u l i n a c h i e v i n g t h e i r g o a l s f o r a) between d i a l y s e s weight g a i n s ? P a t i e n t s * appeared t o . h a v e g r e a t d i f f i c u l t y i n ' a d h e r i n g , t o t h e i r g o a l s f o r ' between d i a l y s e s w e i g h t g a i n s , as i s e v i d e n c e d by the f a c t t h a t o n l y one p a t i e n t was a b l e t o a c h i e v e h i s goal f o r between d i a l y s e s weight g a i n c o n s i s t e n t l y t h r o u g h o u t t h e I n t e r v e n t i o n Phase, and t h i s p a t i e n t c l a i m e d t h a t h i s u r i n e o u t p u t was e s s e n t i a l l y normal, b) p r e - d i a l y s i s serum pot a s s i u m l e v e l s ? In c o n t r a s t t o t h e above, a l l p a t i e n t s e x c e p t one were a b l e t o a c h i e v e 100 p e r c e n t s u c c e s s i n a d h e r i n g t o t h e g o a l s t h e y had e s t a b l i s h e d f o r p r e - d i a l y s i s serum po t a s s i u m . The one p a t i e n t who was not a b l e t o a c h i e v e t h i s had a l o n g - s t a n d i n g problem w i t h e x c e s s i v e l y h i g h p o t a s s i u m l e v e l s . Her r e c o r d s show s e v e r a l p r e - d i a l y s i s p o t a s s i u m l e v e l s o f 6.5 t o 7.0 mEq/L i n t h e s i x month p e r i o d p r e c e d i n g the I n t e r v e n t i o n Phase. She had s e t her g o a l a t 6.0 mEq/L and was a b l e t o a c h i e v e t h i s goal s i x t y - s e v e n p e r c e n t o f the time. TABLE V I I I RELATIONSHIPS BETWEEN DEMOGRAPHIC AND DEPENDENT VARIABLES EXPERIMENTAL AND CONTROL PATIENTS* DEMOGRAPHIC CHARACTERISTIC PRE-INTERVEI^ Weight 'gains ITION PHASE Potass i u m INTERVENT] Weight gains'. ON PHASE Potassium FOLLOW-UP Weight gains-PHASE /Po t a s s i u m Age (N=16) r= -0.15 r= 0.37 r= -0.09 r= 0.44 r= -0.15 r= 0.45 Length: o f D i a l y s i s (N"16) r= -0.14 r= 0.38 r= -0.08 r= 0.45 r= -0.14 r= 0.45 E d u c a t i o n (N=16) r= -0.15 r= 0.32 r= -0.12 r= 0.26 r= -0.20 r= 0.35 Females (N=5) x Males ( N = l l ) y x= 0.90 f y= 1.23 x= 5.26 § ~y= 5.32 x= 1.07 y= 1.09 x= 5.13 y= 5.10 x= 1.08 y= 1.12 t= 0.17 x= 5.30 y= 5.04 t= 0.79 t= 1.23 t= 0.32 . t= 0.12 t= 0.10 M a r r i e d (N=8) x Unmarried (N=8) y x= 1.06 y= 1.20 t= 0.53 x= 5.12 y= 5.48 t= 1.50 x= 1.00 y= 1.16 t= 0.82 x= 4.96 y= 5.25 t= 1.17 x= 1.02 y= 1.19 t= 0.87 x= 4.90 y= 5.37 t= 1.58 Employed (N=8) x Unemployed (N=8) y x= 0.97 y= 1.30 t= 1.26 x= 5.27 y= 5.32 t= 0.18 x= 1.04 y= 1.13 t f 0.48 x= 5.23 y= 4.99 t= 0.97 x= 1.11 y= l . i o t= 0.05 x= 5.17 y= 5.10 t= 0.21 For a l l c a l c u l a t i o n s , t h e degrees o f freedom Mean weight g a i n i n k i l o g r a m s ( d f ) a r e 14. None o f the Pearson P r o d u c t § Moment C o r r e l a t i o n C o e f f i c i e n t s ( r ) o r the Mean serum potassium i n m i n i - E q u i v a l e n t s per L i t r e t - t e s t s ( t ) a r e s i g n i f i c a n t . 86 3. D i d adherence t o t h e f l u i d r e s t r i c t i o n s by t h e E x p e r i m e n t a l p a t i e n t s change o v e r t h e st u d y p e r i o d ? When the p o s i t i o n a l number o f each d i a l y s i s i n the I n t e r v e n t i o n Phase was c o r r e l a t e d w i t h the mean weight g a i n o b t a i n e d by the Ex p e r i m e n t a l p a t i e n t s a t t h a t d i a l y s i s , a n i n s i g n i f i c a n t r e l a t i o n s h i p was fo u n d , ( r=-0.05). T h i s i n d i c a t e s t h a t p a t i e n t s d i d not ten d t o g a i n e i t h e r more o r l e s s weight between d i a l y s e s as the I n t e r v e n t i o n Phase p r o g r e s s e d . D i d adherence t o the d i e t by.the E x p e r i m e n t a l p a t i e n t s change o v e r t h e s t u d y p e r i o d ? When the same p r o c e d u r e was a p p l i e d t o the d a t a f o r p r e -d i a l y s i s serum p o t a s s i u m l e v e l s v e r s u s t he p o s i t i o n a l number o f the d i a l y s i s a t which t he v a l u e was o b t a i n e d , a n o n - s i g n i f i c a n t r e l a t i o n -s h i p was found, ( r=-0.03). T h i s i n d i c a t e s t h a t t he E x p e r i m e n t a l p a t i e n t s d i d not t e n d t o adhere e i t h e r more o r l e s s t o t h e i r d i e t r e s t r i c t i o n s as the I n t e r v e n t i o n Phase p r o g r e s s e d . 4. D i d t h e p a t i e n t ' s e s t i m a t e o f h i s w e l l - b e i n g change o v e r t he stu d y p e r i o d ? W e l l - b e i n g , as measured by t h e mean W e l l - B e i n g S c o r e , tended to i n c r e a s e as t h e I n t e r v e n t i o n p r o g r e s s e d , but t h i s r e l a t i o n s h i p i s not s i g n i f i c a n t , ( r = 0.13). 5. Was w e l l - b e i n g r e l a t e d t o adherence t o a) t h e f l u i d r e s t r i c t i o n s ? The c o r r e l a t i o n f o r t h e W e l l - B e i n g S c o r e and the p a t i e n t ' s between d i a l y s e s weight g a i n s approaches s i g n i f i c a n c e , ( r s = - 0 . 4 8 ) , i n d i c a t i n g t h a t p a t i e n t s tended t o f e e l b e t t e r , as measured by t h e i r t o t a l W e l l - B e i n g S c o r e , as t h e i r w e i g h t g a i n s d e c r e a s e d , b) the d i e t r e s t r i c t i o n s ? The c o r r e l a t i o n between t h e t o t a l W e l l - B e i n g S c o r e 87 and t h e p r e - d i a l y s i s serum p o t a s s i u m l e v e l s i s not s i g n i f i c a n t , ( r s = - 0 . 1 4 ) . T h i s i n d i c a t e s t h a t t h e p a t i e n t ' s e s t i m a t e o f h i s w e l l -b e i n g was r e l a t i v e l y u n a f f e c t e d by changes i n h i s p r e - d i a l y s i s serum pota s s i u m l e v e l s . 6. Was the p a t i e n t ' s e s t i m a t e o f h i s w e l l - b e i n g s i g n i f i c a n t l y d i f f e r e n t on t h o s e days when he was a b l e t o a c h i e v e h i s g o a l s f o r between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s than on t h o s e days when he was not a b l e t o a c h i e v e h i s g o a l s ? P a t i e n t s tended t o f e e l b e t t e r , as r e f l e c t e d i n t h e t o t a l W e l l - B e i n g S c o r e , when th e y a c h i e v e d t h e i r goal f o r weight g a i n between d i a l y s e s . F i v e p a t i e n t s showed a h i g h e r mean W e l l - B e i n g S c o r e f o r :' th o s e d i a l y s e s a t which t h e y were a t o r below t h e i r weight g a i n goal than f o r t h o s e d i a l y s e s a t which t h e y were above t h i s g o a l , a l t h o u g h t h i s was s i g n i f i c a n t f o r o n l y two p a t i e n t s . One p a t i e n t showed a s l i g h t r e v e r s e t r e n d , and one p a t i e n t showed no d i f f e r e n c e . For t h e group taken as a whole, t h e r e was a s i g n i f i c a n t d i f f e r e n c e between the W e l l - B e i n g S c o r e o b t a i n e d a t t h o s e d i a l y s e s when the g o a l s f o r weight g a i n were met and t h o s e d i a l y s e s when th e y were not met, ( t= 3.21, df= 102, p< 0.005). T h i s same tendency was a l s o t r u e f o r the o n l y p a t i e n t who d i d not c o n s i s t e n t l y meet her goal f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s , a l t h o u g h i t was not s i g n i f i c a n t , ( t= 1.81, df= 13, not s i g n i f i c a n t ) . SUMMARY In t h i s c h a p t e r , t h e r e s u l t s o f t h e st u d y have been p r e s e n t e d , w i t h an a n a l y s i s o f t h e re s p o n s e s t o the i n t e r v i e w and the B a l a n c e Sheet and Goal S e t t i n g P r o c e d u r e s ; t he r e s u l t s o f t h e hypotheses t e s t i n g ; and the f i n d i n g s i n r e l a t i o n t o the a d d i t i o n a l r e s e a r c h q u e s t i o n s . CHAPTER V SUMMARY, IMPLICATIONS FOR NURSING AND RECOMMENDATIONS The r e s u l t s o f an e x p e r i m e n t a l s t u d y o f t h e e f f e c t s o f a n u r s i n g i n t e r v e n t i o n on h e m o d i a l y s i s p a t i e n t s ' adherence to t h e i r d i e t and f l u i d r e s t r i c t i o n s a r e p r e s e n t e d i n t h i s r e p o r t . A sample c o n s i s t i n g o f s i x t e e n h e m o d i a l y s i s p a t i e n t s from one r e n a l u n i t was s e l e c t e d a c c o r d i n g to p r e - e s t a b l i s h e d c r i t e r i a , and then randomly a s s i g n e d t o e i t h e r E x p e r i m e n t a l o r C o n t r o l c o n d i t i o n s . The E x p e r i m e n t a l group-was exposed t o t h e independent v a r i a b l e , t he n u r s i n g i n t e r v e n t i o n , which c o n s i s t e d o f an i n i t i a l i n t e r v i e w , t he use o f a B a l a n c e Sheet P r o c e d u r e as an a d j u n c t t o d e c i s i o n - m a k i n g , and t h e e s t a b l i s h m e n t o f g o a l s by t h e p a t i e n t f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s and between d i a l y s e s w eight g a i n s . The E x p e r i m e n t a l p a t i e n t s completed a W e l l - B e i n g R a t i n g S c a l e a t each d i a l y s i s d u r i n g t he fi v e - w e e k I n t e r v e n t i o n Phase. The dependent v a r i a b l e s were between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . Two hypotheses were proposed and t e s t e d i n t h i s s t u d y : 1. There w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o t h e f l u i d r e s t r i c t i o n s between h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n u t i l i z i n g goal s e t t i n g i n a d e c i s i o n - m a k i n g model and h e m o d i a l y s i s p a t i e n t s who were not exposed t o t h e i n t e r v e n t i o n as measured by between d i a l y s e s w e i g h t g a i n s . 88 89 2. There w i l l be no s i g n i f i c a n t d i f f e r e n c e i n adherence t o the d i e t r e s t r i c t i o n s between h e m o d i a l y s i s p a t i e n t s exposed t o a n u r s i n g i n t e r v e n t i o n u t i l i z i n g goal s e t t i n g i n a d e c i s i o n - m a k i n g model and h e m o d i a l y s i s p a t i e n t s who were not exposed t o the i n t e r v e n t i o n as measured by p r e - d i a l y s i s serum p o t a s s i u m l e v e l s . The d a t a p a r t i a l l y s u p p o r t e d t h e hypotheses. T h e . f i r s t : h y p o t h e s i s was a c c e p t e d i n t h e N u l l form, and t h e second h y p o t h e s i s was r e j e c t e d . A c c e p t e d i n s t e a d was the A l t e r n a t i v e H y p o t h e s i s t o H y p o t h e s i s 2: P r e -d i a l y s i s serum p o t a s s i u m l e v e l s w i l l be s i g n i f i c a n t l y lower f o r hemo-d i a l y s i s p a t i e n t s exposed t o the n u r s i n g i n t e r v e n t i o n than f o r t h o s e h e m o d i a l y s i s p a t i e n t s not exposed t o the i n t e r v e n t i o n . The d a t a i n d i c a t e d t h a t p a t i e n t s e x p e r i e n c e d t he most d i f f i c u l t y w i t h t h e i r f l u i d r e s t r i c t i o n s . The n u r s i n g i n t e r v e n t i o n d i d not appear t o have been e f f e c t i v e i n a s s i s t i n g p a t i e n t s t o adhere t o t h e i r f l u i d r e s t r i c t i o n s , but i t d i d have a s i g n i f i c a n t e f f e c t i n a s s i s t i n g p a t i e n t s t o adhere t o t h e i r d i e t a r y r e s t r i c t i o n s . Weight g a i n between d i a l y s e s was an i m p o r t a n t f a c t o r i n t h e p a t i e n t ' s e s t i m a t e o f h i s w e l l - b e i n g . IMPLICATIONS FOR NURSING The n u r s i n g i n t e r v e n t i o n was shown t o have a s i g n i f i c a n t e f f e c t i n l o w e r i n g p r e - d i a l y s i s serum p o t a s s i u m l e v e l s i n t h e group o f p a t i e n t s s t u d i e d . The E x p e r i m e n t a l p a t i e n t s o b t a i n e d s i g n i f i c a n t l y lower p r e -d i a l y s i s serum p o t a s s i u m l e v e l s d u r i n g t h e I n t e r v e n t i o n Phase than d i d the C o n t r o l p a t i e n t s , and t h e p r e - d i a l y s i s serum p o t a s s i u m l e v e l s o b t a i n e d by the E x p e r i m e n t a l p a t i e n t s d u r i n g t h e I n t e r v e n t i o n Phase were s i g n i f i c a n t l y lower than the l e v e l s they had o b t a i n e d p r i o r t o t h e i n t e r v e n t i o n . As e x t r e m e l y h i g h b l o o d l e v e l s o f po t a s s i u m a r e l i f e t h r e a t e n i n g , t h i s r e s u l t o f f e r s s t r o n g s u p p o r t f o r the i n t e r v e n t i o n . 90 Between d i a l y s e s w e i g h t g a i n s were u n a f f e c t e d by t h e i n t e r v e n t i o n however, showing o n l y a s m a l l d e c r e a s e i n t h e mean weight g a i n o b t a i n e d by t h e E x p e r i m e n t a l p a t i e n t s from; the P r e - I n t e r v e n t i o n Phase t o the I n t e r v e n t i o n Phase. In view o f the f a c t t h a t between d i a l y s e s weight g a i n s appear t o be c l o s e l y a s s o c i a t e d w i t h the p a t i e n t ' s sense o f w e l l -b e i n g , t h i s r e s u l t i s d i s a p p o i n t i n g . An i m p o r t a n t f i n d i n g i s the tendency f o r between d i a l y s e s weight g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s t o r e t u r n t o P r e - I n t e r v e n -t i o n b a s e l i n e l e v e l s when c o n t i n u o u s n u r s i n g s u r v e i l l a n c e was withdrawn i n the Follow-Up Phase. T h i s f i n d i n g makes i t d i f f i c u l t t o j u d g e t h e e x a c t mechanism r e s p o n s i b l e f o r the noted d e c r e a s e i n p r e - d i a l y s i s serum p o t a s s i u m l e v e l s , as i t may r e p r e s e n t an " a t t e n t i o n - p l a c e b o " e f f e c t . The p o s s i b i l i t y e x i s t s , however, t h a t the l e n g t h o f the I n t e r v e n t i o n Phase was i n s u f f i c i e n t f o r p a t i e n t s t o d e v e l o p t h e i r own i n n e r c o n t r o l s f o r a c h i e v i n g t h e i r g o a l s . I n c r e a s i n g the l e n g t h o f the i n t e r v e n t i o n might encourage the development o f t h i s i n n e r c o n t r o l . A l t e r n a t i v e l y , t h i s r e s u l t may i n d i c a t e t h a t p a t i e n t s r e q u i r e c o n t i n u o u s n u r s i n g s u p p o r t t o a s s i s t them t o a c h i e v e t h e i r g o a l s . A p e r i o d i c r e v i e w , perhaps weekly o r b i - m o n t h l y , between t h e n u r s e and the p a t i e n t i n r e l a t i o n t o t h e p a t i e n t ' s s t a t e d g o a l s and h i s a c t u a l w eight g a i n s and p o t a s s i u m l e v e l s might p r o v i d e the n u r s i n g g u i d a n c e and a t t e n t i o n t h a t would s u s t a i n t h e patient'.s i n t e r e s t and e f f o r t t o adhere t o h i s d i e t and f l u i d r e s t r i c t i o n s . A t the same t i m e , t h i s p e r i o d i c r e v i e w would a l l o w t h e p a t i e n t t o a l t e r h i s g o a l s i n view o f h i s c h a n g i n g p h y s i c a l h e a l t h and m e d i c a l c o n d i t i o n . I t seems c l e a r t h a t a l o n g - t e r m change i n p a t i e n t adherence t o t h e d i e t and f l u i d r e s t r i c t i o n s cannot be e f f e c t e d i n a "one-shot" i n t e r v e n t i o n . R a t h e r , some program o f r e g u l a r , s u s t a i n e d i n t e r a c t i o n 91 between the s t a f f and p a t i e n t s i n r e l a t i o n t o t h e p a t i e n t ' s d e c i s i o n -making r e g a r d i n g h i s g o a l s i s i n d i c a t e d . Research i n d i c a t e s t h a t c o n t i n u i t y o f c a r e and p a t i e n t s a t i s f a c -t i o n w i t h h i s c a r e a r e i m p o r t a n t f a c t o r s i n h i s c o m p l i a n c e . An i n t e r e s t i n g s u g g e s t i o n i s t h e use o f a p r i m a r y n u r s i n g system, as has been a d v o c a t e d by s e v e r a l d i a l y s i s s p e c i a l i s t s , where each n u r s e i s r e s p o n s i b l e f o r two o r t h r e e p a t i e n t s . T h i s would p r o v i d e each p a t i e n t w i t h " h i s nursed who was t h o r o u g h l y f a m i l i a r w i t h h i s c o n d i t i o n , needs, and g o a l s and c o u l d p e r i o d i c a l l y r e v i e w w i t h him h i s p r o g r e s s . Goal s e t t i n g appears t o be a v a l u a b l e means o f t r a n s f o r m i n g d e c i s i o n s i n t o a c t i o n s . The p a t i e n t s i n t h i s s t u d y were a b l e t o make d e c i s i o n s r e g a r d i n g d e s i r e d weight g a i n s between d i a l y s e s and p r e -d i a l y s i s serum p o t a s s i u m l e v e l s w i t h o u t d i f f i c u l t y . Many o f t h e s e p a t i e n t s had a c t u a l l y s e t d e s i r a b l e l i m i t s f o r t h e m s e l v e s , based upon p r e v i o u s e x p e r i e n c e o f t h e e f f e c t s o f e x c e e d i n g t h e s e l i m i t s . W h i le some p a t i e n t s r e t a i n e d g o a l s which were not s u b s t a n t i a l l y d i f f e r e n t than t h e p a t t e r n s t h e y had a l r e a d y e s t a b l i s h e d , o t h e r s s e t t h e i r g o a l s a t a lower l e v e l because t h e y d i d not f e e l c o m f o r t a b l e w i t h t h e i r p r e v i o u s w e i g h t g a i n s and p o t a s s i u m l e v e l s . The r e s u l t s i n d i c a t e t h a t p a t i e n t s e x p e r i e n c e d more d i f f i c u l t y w i t h t h e i r f l u i d r e s t r i c t i o n s t h a n w i t h t h e p o t a s s i u m r e s t r i c t i o n s . The p a t i e n t s i n t h i s study were a b l e t o c o n t r o l t h e i r p o t a s s i u m l e v e l s , as 'R.B. Haynes, "A C r i t i c a l Review o f t h e 'Determinants' o f P a t i e n t Compliance With T h e r a p e u t i c Regimens," i n Compliance With T h e r a p e u t i c  Regimens, eds., D.L. S a c k e t t and R.B. Haynes ( B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976), p.35. 2 S. Conlon e t a l . , "An Experiment i n P r i m a r y N u r s i n g , " J o u r n a l o f  t h e American A s s o c i a t i o n o f Nephrology Nurses and T e c h n i c i a n s , 3:133-8,. 1976, see a l s o , M.R. Leonard, " H e a l t h I s s u e s and P r i m a r y N u r s i n g i n Nephrology Care," N u r s i n g C I i n i c s o f North America, 10:413-20, September, 1975. 92 e v i d e n c e d by t h e f a c t t h a t a l l but one p a t i e n t were a b l e t o a c h i e v e t h e i r g o a l s f o r p r e - d i a l y s i s serum p o t a s s i u m l e v e l s c o n s i s t e n t l y t h r o u g h -o u t t he I n t e r v e n t i o n Phase. In c o n t r a s t , o n l y one p a t i e n t was a b l e t o a c h i e v e h i s goal f o r between d i a l y s e s weight g a i n s a l l o f t h e time. The e s t a b l i s h m e n t o f g o a l s by the p a t i e n t i n r e l a t i o n t o h i s d i e t and f l u i d r e s t r i c t i o n s may p r o v i d e t he n e c e s s a r y means o f a v o i d i n g t h e s i t u a t i o n where p a t i e n t s a r e dependent on the d i a l y s i s s t a f f f o r d e c i s i o n - m a k i n g . P a t i e n t s u l t i m a t e l y make the d e c i s i o n t o adhere o r not t o adhere t o t h e i r d i e t and f l u i d r e s t r i c t i o n s , and t h e f a c t o r s g o v e r n i n g t h i s b e h a v i o r a r e more d i r e c t l y r e l a t e d t o the p a t i e n t ' s p e r c e p t i o n o f what i s d e s i r a b l e f o r him, than t h e y a r e w i t h a f e a r o f the n e g a t i v e consequences o f non-adherence as seen by the d i a l y s i s s t a f f . A v e r y p o s s i b l e r e s u l t o f the r e p e a t e d use o f t h r e a t s and warnings by nurses-}, i s t h a t t he p a t i e n t b e g i n s t o p e r c e i v e t he nu r s e as a n e g a t i v e and c r i t i c i z i n g f o r c e , r a t h e r than as a r e s o u r c e person he can seek o u t to h e l p him w i t h h i s problems. The r e s u l t i s withdrawal by the p a t i e n t , and t h e r e s i g n a t i o n by both t h e s t a f f and the p a t i e n t t h a t n o t h i n g can be done t o change t h e p a t t e r n . E n c o u r a g i n g e v i d e n c e i n s u p p o r t o f the n u r s i n g i n t e r v e n t i o n i s o b t a i n e d from t h e r e s u l t s o f the W e l l - B e i n g R a t i n g S c a l e which i n d i c a t e t h a t w e l l - b e i n g tended t o improve as the i n t e r v e n t i o n p r o g r e s s e d , , a l t h o u g h t h i s was not s t a t i s t i c a l l y s i g n i f i c a n t . P a t i e n t s a l s o r a t e d t h e i r w e l l - b e i n g h i g h e r on t h o s e days when th e y had met t h e i r g o a l s f o r weight g a i n s and p o t a s s i u m l e v e l s . A c o r r e l a t i o n was found, such t h a t w e l l - b e i n g was r a t e d h i g h e r by t h e p a t i e n t when h i s weight g a i n s were low, s u g g e s t i n g t h a t weight g a i n s a r e an i m p o r t a n t d e t e r m i n i n g f a c t o r i n h e m o d i a l y s i s p a t i e n t s ' sense o f w e l l - b e i n g . T h i s r e l a t i o n d i d n ot h o l d f o r w e l l - b e i n g and p r e - d i a l y s i s serum pot a s s i u m l e v e l s . 93 Perhaps t h i s i s because weight g a i n has more meaning f o r t h e p a t i e n t . I t i s more o b s e r v a b l e and u n d e r s t a n d a b l e , as t h e p a t i e n t can measure h i s w e i g h t g a i n s between d i a l y s e s a t home, and he o f t e n can d e t e c t p h y s i c a l changes as a r e s u l t o f h i s w e i g h t g a i n s u c h as f a c i a l o r pedal edema. Potass i u m on the o t h e r hand, causes no p h y s i c a l symptoms u n l e s s i t r e a c h e s v e r y h i g h l e v e l s i n t h e b l o o d . For t h e group as a whole, w e l l - b e i n g was s u r p r i s i n g l y h i g h , w i t h an average W e l l - B e i n g S c o r e o f 41.8 on a s c a l e o f 50. I t s h o u l d be emphasized however, t h a t the W e l l - B e i n g R a t i n g S c a l e sought answers t o s p e c i f i c a s p e c t s o f w e l l - b e i n g ; t h a t i s , t h e p a t i e n t ' s e s t i m a t e o f t h e p o s i t i v e and n e g a t i v e outcomes i d e n t i f i e d i n the B a l a n c e Sheet P r o c e d u r e . The q u e s t i o n s i n the I n t e r v i e w Guide t h a t d e a l t w i t h knowledge o f the d i e t and f l u i d r e s t r i c t i o n s i n d i c a t e d t h a t p a t i e n t s had a poor u n d e r s t a n d i n g o f t h e i r d i e t s . As a l l t h e s e p a t i e n t s were seen r e g u l a r l y by r e n a l d i e t i t i a n s and had been i n s t r u c t e d i n a l l a s p e c t s o f t h e i r d i e t s , t h i s may i n d i c a t e t h a t p a t i e n t s a r e indeed u s i n g d e n i a l t o a v o i d t h e t h r e a t e n i n g r e a l i z a t i o n o f t h e i r r o l e i n m a i n t a i n i n g t h e i r l i v e s , 3 as s u g g e s t e d by G o l d s t e i n and R e z n i k o f f . R e g u l a r and f r e q u e n t r e p e t i t i o n o f i n f o r m a t i o n i n a n o n - t h r e a t e n -i n g and n o n - c r i t i c a l manner may be n e c e s s a r y t o r e i n f o r c e the l e a r n i n g o f the r e s t r i c t i o n s . The p r i m a r y n u r s i n g system o f f e r s a p o s s i b l e v e h i c l e f o r t h e d i a g n o s i s o f l e a r n i n g d e f i c i t s and the c r e a t i o n o f i n d i v i d u a l i z e d t e a c h i n g p l a n s . These might, from time t o t i m e , i n v o l v e r e f e r r a l t o the r e n a l d i e t i t i a n . Nurses i n t h i s way c o u l d a s s i s t the A.M. G o l d s t e i n and M. R e z n i k o f f , " S u i c i d e i n C h r o n i c Hemo-d i a l y s i s P a t i e n t s From an E x t e r n a l Locus o f C o n t r o l Framework," American  J o u r n a l o f P s y c h i a t r y , 127:1204-1207, March, 1971. 94 e f f e c t i v e n e s s o f t h e r e n a l d i e t i t i a n by i d e n t i f y i n g s p e c i f i c l e a r n i n g needs on which the d i e t i t i a n c o u l d base her t e a c h i n g . P r e s e n t i n g the o f t e n overworked d i e t i t i a n w i t h the i n f o r m a t i o n t h a t the p a t i e n t "does not u n d e r s t a n d h i s d i e t " does not h e l p her t o c o n c e n t r a t e her t e a c h i n g on t h o s e a s p e c t s o f t h e r e s t r i c t i o n s which the p a t i e n t does not u n d e r s t a n d . RECOMMENDATIONS FOR FURTHER RESEARCH The n u r s i n g i n t e r v e n t i o n d e s c r i b e d i n t h i s s t u d y r e c e i v e s s u f f i c i e n t s u p p o r t t o recommend i t s use i n the c l i n i c a l a r e a , and i n f u t u r e r e s e a r c h d e s i g n s . T h i s i n t e r v e n t i o n , based on a d e c i s i o n -making model i n c o n j u n c t i o n w i t h goal s e t t i n g by p a t i e n t s i n r e l a t i o n t o t h e i r m e d i c a l regimens, appears t o o f f e r an e f f e c t i v e method f o r nurses t o a s s i s t p a t i e n t s i n a d h e r i n g t o t h e i r d i e t and f l u i d r e s t r i c t i o n s . I n v e s t i g a t o r s who p l a n t o u t i l i z e t he t h e o r e t i c a l framework d e s c r i b e d i n t h i s s t u d y , a r e a d v i s e d t o c o n s i d e r the f o l l o w i n g suggestions:' a) attempts s h o u l d be made to i n c r e a s e t h e sample s i z e o f t h e s t u d y group, b) i f p o s s i b l e , u t i l i z e p a t i e n t s from more than one c l i n i c a l a r e a i n o r d e r t o i n c r e a s e the r e l i a b i l i t y and g e n e r a l i z a b i l i t y o f t h e f i n d i n g s , c) d e s i g n s which i n v o l v e the use o f a randomly a s s i g n e d c o n t r o l group a r e s t r o n g l y encouraged on m e t h o d o l o g i c a l grounds, and f i n a l l y , d) i n c r e a s i n g the l e n g t h o f t h e I n t e r v e n t i o n and a l s o the Follow-Up Phases would p r o v i d e the r e s e a r c h e r w i t h s u b s t a n t i a l l y more i n f o r m a t i o n on which t o base h i s o r / h e r c o n c l u s i o n s . The i n c l u s i o n o f a pre and p o s t i n t e r v e n t i o n t e s t o f the p a t i e n t ' s s e l f - e s t e e m c o u l d be an i n t e r e s t i n g and v a l u a b l e a d d i t i o n t o t h e d e s i g n o f f u t u r e s t u d i e s . In t h i s way, the r e s e a r c h e r c o u l d t e s t the assumption t h a t p r o v i d i n g o p p o r t u n i t i e s f o r p a t i e n t . x b n t r o l ":of" d e c i s i o n - m a k i n g enhances s e l f - e s t e e m . A n o t h e r i n t e r e s t i n g r e s e a r c h p o s s i b i l i t y would be to examihe p a t i e n t adherence t o t h e . d i e t and f l u i d r e s t r i c t i o n s i n a 95 d e s i g n which i n c o r p o r a t e s d e c i s i o n - m a k i n g and goal s e t t i n g w i t h i n a p r i m a r y n u r s i n g framework. The i n v e s t i g a t o r recommends t h a t f u t u r e s t u d i e s i n c o r p o r a t e i n t o the d e s i g n some means o f e v a l u a t i n g t he patient's w e l l - b e i n g , s e l f - e s t e e m o r some o t h e r measure o f t h e o c c u r r e n c e o f the p o s i t i v e outcomes f o r the i n d i v i d u a l r e s u l t i n g from h i s adherence to the d i e t and f l u i d r e s t r i c t i o n s . I t seems i m p o r t a n t t o r e l a t e improved p a t i e n t c o m p l i a n c e w i t h h i s regimen w i t h some means o f e v a l u a t i n g the b e n e f i t s from t he p a t i e n t ' s p o i n t o f view. Perhaps a r e f i n e d w e l l - b e i n g q u e s t i o n a i r e t h a t more s p e c i f i c a l l y e v a l u a t e s t h o s e p e r s o n a l l y r e l e v a n t p a t i e n t outcomes would r e f l e c t more a c c u r a t e l y the b e n e f i t s t o be a c h i e v e d i n s t r a t e g i e s t o improve c o m p l i a n c e . Compliance f o r i t s own sake s h o u l d not become t h e goal o f n u r s i n g c a r e . BIBLIOGRAPHY 96 97 BOOKS A b e l s o n , R.P. ( e d : ) . T h e o r i e s o f C o g n i t i v e C o n s i s t e n c y : A Source Book. Ch i c a g o : Rand M c N a l l y , 1968. Batey, M. ( e d . ) . Communicating N u r s i n g R e s e a r c h , V o l . I I I . B o u l d e r , C o l o r a d o : WICHE, 1972. B e r l y n e , G.M. ( e d . ) . N u t r i t i o n i n Renal D i s e a s e . London: E. and S. L i v i n g -s t o n e , 1968. B l a u , P.M. Exchange and Power i n S o c i a l L i f e . New York: John W i l e y and Sons, 1967. B r e s t , A.N. and J.H. -Mover, ( e d s . ) . Renal F a i l u r e . P h i l a d e l p h i a : J.B. L i p p i n c o t t , Co., 1967. Brundage, D.J. N u r s i n g Management o f Renal Problems. S t . L o u i s : The C.V. Mosby Co., 1976. C a r r o l l , S.J. and H:L; T o s i . Management by O b j e c t i v e s : A p p l i c a t i o n s and  Research. New York: M a c M i l l a n P u b l i s h i n g Co., 1973. Da v i d s o n , R.C. and B.H. S c r i b n e r . A P h y s i c i a n ' s S y l l a b u s f o r t h e Treatment o f C h r o n i c Renal F a i l u r e . S e a t t l e , Washington: S e a t t l e A r t i f i c i a l ":" Kidney C e n t e r , 1967. D u s t i n , R. and R. George. A c t i o n C o u n s e l l i n g f o r B e h a v i o r Change. New York: I n t e x t E d u c a t i o n a l P u b l i s h e r s , 1973. Fox, D. Fundamentals o f Research i n N u r s i n g . New York: A p p l e t o n - C e n t u r y -C r o f t s , 1966. Gi l m o r e , J.V. The P r o d u c t i v e P e r s o n a l i t y . San F r a n s c i s c o : A l b i o n P u b l i s h i n g Co., 1974. Greenwald, A., T. "Brock, and T. Ostrom ( e d s . ) . P s y c h o l o g i c a l F o u n d a t i o n s  o f A t t i t u d e s . New York: Academic P r e s s , 1968. Greenwood, W.T. D e c i s i o n T h e o ry and I n f o r m a t i o n Systems: C i n c i n n a t i , Ohio: South-Western P u b l i s h i n g Co., 1969. Gutch", C.F. and M.H. S t o n e r . Review o f H e m o d i a l y s i s f o r Nurses and  D i a l y s i s P e r s o n n e l . 2d. ed. S t . L o u i s : The C.V. Mosby Co., 1975. G u t h r i e , W.A. e t a l . Management by O b j e c t i v e s . C l e v e l a n d , Ohio: A s s o c i a t i o n f o r Systems Management, 1971. Hampers, C.L. and E. Schupak. Long-Term H e m o d i a l y s i s. New York: Grune and S t r a t t o n , 1967. H a r r i n g t o n , J.D. and E.R. Br e n e r . P a t i e n t Care i n Renal F a i l u r e . P h i l a d e l p h i a : W.B. Saunders Co., 1973. Jam's, I.L. Changing B e h a v i o r Through C o u n s e l l i n g . New Haven: The Y a l e U n i v e r s i t y P r e s s , 1975. 98 K e e f e r , C.S. and R.W. Wi1 k i n s . ( e d s , ) . M e d i c i n e . Boston; L i t t l e , Brown and Co., 1970. K e r l i n g e r , F.N. F o u n d a t i o n s o f B e h a v i o r a l R e s e a r c h , 2d.ed. New York: H o l t , R i n e h a r t and Winston, 1973. Koushanpour, E. Renal P h y s i o l o g y : P r i n c i p l e s and F u n c t i o n s . P h i l a d e l p h i a : W.B. Saunders Co., 1976. Krause, M.V. and M.A. Huncher. Food, N u t r i t i o n and D i e t Therapy. 5 t h . ed. P h i l a d e l p h i a : W.B. Saunders Co., 1972. Lee, S.M. Goal Programming f o r D e c i s i o n A n a l y s i s . P h i l a d e l p h i a : Auerbach P u b l i s h e r s , 1972. Levy, N.B. ( e d . ) . L i v i n g o r D y i n g : A d a p t a t i o n t o H e m o d i a l y s i s . S p r i n g -f i e l d , I l l i n o i s : C h a r l e s C. Thomas P u b l i s h e r , 1974. M a r v i n , P. D e v e l o p i n g D e c i s i o n s f o r A c t i o n . Homeward, I l l i n o i s : Dow J o n e s - I r w i n , 1971. Mechanic, D. M e d i c a l S o c i o l o g y : A S e l e c t i v e View. New York: The Free P r e s s , 1968. M i l l e r , D.W. and M.K. S t a r r . The S t r u c t u r e o f Human D e c i s i o n s . Englewood 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 , 1967. N a t e l s o n , S. and E.A. N a t e l s o n . P r i n c i p l e s o f A p p l i e d C l i n i c a l C h e m i s t r y . New York: Plenum P r e s s , 1975. Nose^ Y. Manual on A r t i f i c i a l Organs. V o l . I , The A r t i f i c i a l Kidney. S t . L o u i s : The C.V. Mosby Co., 1969. P a r s o n s , T. The S o c i a l System. C h i c a g o , I l l i n o i s : The Free P r e s s , 1951. Robbins, S.P. The A d m i n i s t r a t i v e P r o c e s s . Englewood 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 , 1976. R o b e r t s , S.L. B e h a v i o r a l Concepts and t h e C r i t i c a l l y 111 P a t i e n t . Englewood 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 , 1976. Robinson, C.H. Normal and T h e r a p e u t i c N u t r i t i o n . 14th. ed. New York: The M a c M i l l a n Co., 1972. S a c k e t t , D.L. and R.B. Haynes. ( e d s . ) . Compliance With T h e r a p e u t i c Regimens. B a l t i m o r e : The Johns Hopkins U n i v e r s i t y P r e s s , 1976. S c h l o t t e r , L. ( e d . ) . N u r s i n g and t h e Nephrology P a t i e n t . F l u s h i n g , New York: M e d i c a l E x a m i n a t i o n P u b l i s h i n g Co., 1973. Schoenberg, B. e t a l . ( e d s . ) . Loss and G r i e f : P s y c h o l o g i c a l Management i n  M e d i c a l P r a c t i c e . New York: Columbia U n i v e r s i t y P r e s s , 1970. S c h u t z , W.C. T I RO: A T h r e e - D i m e n s i o n a l Theory o f I n t e r p e r s o n a l B e h a v i o r . New York: H o l t , R i n e h a r t and Winston, I960. 99 S t r a u s s , A.L. C h r o n i c I l l n e s s and t h e Q u a l i t y o f L i f e . S t . L o u i s : The C.V. Mosby Co., 1975. S t r a u s s , M.B. and L.G. Welt. ( e d s . ) . D i s e a s e s o f the Kidney. 2d.ed. 2 v o l s . B oston: L i t t l e , Brown, and Co., 1971. T r e e c e , E.W. and J.W. T r e e c e . Elements o f Research i n N u r s i n g . 2d.ed. S t . L o u i s : The C.V. Mosby Co., 1977. Thomas, K. ( e d . ) . A t t i t u d e s and B e h a v i o r . M i d d l e s e x , E n g l a n d : Penguin Books, 1971. Vander, A . J . Renal P h y s i o l o g y . New York: McGraw-Hill Book Co., 1975. W a k e f i e l d , J . ( e d . ) . Seek W i s e l y t o P r e v e n t . London: Her M a j e s t y ' s S t a t i o n e r y O f f i c e , 1973. Whitby, L.G., T.W. Percy-Robb, and A.F. Smith. L e c t u r e Notes on C l i n i c a l  C h e m i s t r y . London: B l a c k w e l l S c i e n t i f i c P u b l i c a t i o n s , 1975. W i l l s , M.R. The B i o c h e m i c a l Consequences o f C h r o n i c Renal F a i l u r e . L e i c e s t e r , E n g l a n d : The C a v e n d i s h P r e s s , 1971. Zimbardo, P. and E.B. Ebbesen. I n f l u e n c i n g A t t i t u d e s and Changing B e h a v i o r . Reading, M a s s a c h e s e t t s : Addison-Wesley P u b l i s h i n g Co., 1970. PERIODICALS A b e l , J . J . e t . a l . " T h e Removal o f D i f f u s a b l e Substances from the C i r -c u l a t i o n B l o o d by Means o f D i a l y s i s , " T r a n s a c t i o n s o f t h e American  A s s o c i a t i o n o f P h y s i o l o g i s t s , 28:40-44, 1913. Abram, H.S. "The P s y c h i a t r i s t , The Treatment o f C h r o n i c Renal F a i l u r e and the P r o l o n g a t i o n o f L i f e , " American J o u r n a l o f P s y c h i a t r y , 126:157-165, August, 1969. Abram, H.S. " S u r v i v a l by Machine: The P s y c h o l o g i c a l S t r e s s o f C h r o n i c H e m o d i a l y s i s , " P s y c h i a t r y i n M e d i c i n e , 1:37-51, J a n u a r y , 1970. Abram, H.S. e t . a l . " S u i c i d a l B e h a v i o r i n C h r o n i c D i a l y s i s P a t i e n t s , " American J o u r n a l o f P s y c h i a t r y , 127:119-124, March, 1971. Anger, D. "The P s y c h o l o g i c a l S t r e s s o f C h r o n i c Renal F a i l u r e and Long-Term H e m o d i a l y s i s , " N u r s i n g C l i n i c s o f North A m e r i c a , 10:449-459, September, 1975. Brown, H.W. e t . a l . " C l i n i c a l Problems R e l a t e d t o the P r o l o n g e d A r t i f i c i a l M aintenance o f L i f e by H e m o d i a l y s i s i n C h r o n i c Renal F a i l u r e , " T r a n s a c t i o n s o f the American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, 8:281-291, 1962. Comty, C M . "Long-Term D i e t a r y Management o f D i a l y s i s P a t i e n t s : P a t h o l o g i c a l Problems and D i e t a r y Requirements," J o u r n a l o f the  American D i e t e t i c A s s o c i a t i o n , 53: 439-444, November,, 1968. Conlon, S., H. Feigenbaum, and M.Lamb."An Experiment i n P r i m a r y N u r s i n g , " J o u r n a l o f the American A s s o c i a t i o n o f Nephrology Nurses and  T e c h n i c i a n s , 3:133-138, 1976. TOO C o r e a , A.L. " C u r r e n t Trends i n D i e t and Drug Therapy f o r t he D i a l y s i s P a t i e n t , " N u r s i n g C I i n i c s o f North, A m e r i c a , 10:469-479, September, 1975. C u l l e n , A.B. " D i e t a r y Management o f C h r o n i c Uremia and P a t i e n t Adherence t o D i e t a r y R e s t r i c t i o n s , " American J o u r n a l o f C l i n i c a l N u t r i t i o n , 21:626-630, June, 1968. Cz a c z k e s , J.W. and A. Kaplan De-Nour. " S e l e c t i o n o f P a t i e n t s f o r R e g u l a r H e m o d i a l y s i s , " D i a l y s i s and Renal T r a n s p l a n t a t i o n , ed. J.S. Cameron. London: The M a c M i l l a n Co., 1972, pp.167-172. D a v i s , M.S. " V a r i a t i o n s i n P a t i e n t s ' Compliance With D o c t o r s ' O r d e r s : A n a l y s i s o f Congruence Between Survey Responses and R e s u l t s o f E m p i r i c a l I n v e s t i g a t i o n s , " J o u r n a l o f M e d i c a l E d u c a t i o n , 41:1037-1048, November, 1966. " P r e d i c t i n q Non-Compliant B e h a v i o r , " J o u r n a l o f H e a l t h and S o c i a l B e h a v i o r , 8:265-271, 1967. " D i s c h a r g e From H o s p i t a l A g a i n s t M e d i c a l A d v i c e : A Study o f R e c i p r o c i t y i n t h e D o c t o r - P a t i e n t R e l a t i o n s h i p , " S o c i a l S c i e n c e i n  M e d i c i n e , 1:336-344, 1967. " V a r i a t i o n s i n P a t i e n t s ' Compliance With D o c t o r s ' A d v i c e : An E m p i r i c a l A n a l y s i s o f P a t t e r n s o f Communication," American J o u r n a l  o f P u b l i c H e a l t h , 58:274-288, F e b r u a r y , 1968. " P h y s i o l o g i c , P s y c h o l o g i c a l and Demographic F a c t o r s i n P a t i e n t Compliance With D o c t o r s " O r d e r s , " M e d i c a l C a r e , 61:115-122, A p r i l , 1968. " V a r i a t i o n i n P a t i e n t s ' Compliance With D o c t o r s ' O r d e r s : M e d i c a l P r a c t i c e and D o c t o r - P a t i e n t I n t e r a c t i o n , " P s y c h i a t r y i n M e d i c i n e , 2:31-44, 1971. and R.L. E i c h h o r n . "Compliance With M e d i c a l Regimens: A Panel Study," J o u r n a l o f H e a l t h and Human B e h a v i o r , 4:240-247, 1963. del Greco, F. and F.A. Krumlovsky. " C h r o n i c Renal F a i l u r e , " P o s t - G r a d u a t e  M e d i c i n e , 52:176-183, September, 1972. E l l i n q , A. e t a l . " P a t i e n t P a r t i c i p a t i o n i n a P e d i a t r i c Program." J o u r n a l  o f H e a l t h and Human B e h a v i o r , 1:183-191, F a l l , 1960. F e s t i n g e r , L. and J.M. C a r l s m i t h , " C o g n i t i v e Consequences o f F o r c e d Comp-l i a n c e , " J c _ r n a l _ _ o f _ ^ 58:204-210, 1959. F i n k , D.L. e t a l . "The Management S p e c i a l i s t i n E f f e c t i v e P e d i a t r i c Ambulatory C a r e , American J o u r n a l o f P u b l i c H e a l t h , 59:527-533, 1969. F o r d , L. "A Q u e s t i o n o f B a l a n c e : The E f f e c t s o f Chronic. Renal F a i l u r e and Long-Term D i a l y s i s , " The Canadian Nurse, 75:19-24, March, 1977. F r a n c i s , V. e t a l . "Gaps i n . D o c t o r - P a t i e n t Communication: P a t i e n t s ' Response to M e d i c a l A d v i c e , " New England J o u r n a l o f M e d i c i n e , 280: 535-540, March 6, 1969. 101 G o l d s t e i n , A.M. and M. R e z n i k o f f . " S u i c i d e i n C h r o n i c H e m o d i a l y s i s From a n ' E x t e r n a l Locus, o f C o n t r o l Framework," American J o u r n a l o f  P s y c h i a t r y , 127:124-127, March:, 1971. G o l d s t e i n , B. and R.L. E i c h h o r n . "The Changing P r o t e s t a n t E t h i c : R u r a l P a t t e r n s i n H e a l t h , Work and L e i s u r e , " American S o c i o ! o g i c Review, 26:557-565, August, 1961. Halcomb, J . L . and R.W. M a c D o n a l d . " S o c i a l F u n c t i o n i n g o f A r t i f i c i a l Kidney P a t i e n t s , " S o c i a1 S c i ence i n Medi c i ne, 7:109-119, 1973. Hayes, C P . and R.R. Robinson. " F e c a l P o t a s s i u m E x c r e t i o n i n P a t i e n t s on C h r o n i c I n t e r m i t t e n t H e m o d i a l y s i s , " T r a n s a c t i o n s Of the American  S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, 11:242-246, 1965. Hekelman, F.P. and C.A. O s t e n d a r p . " N u r s i n g Approaches t o C o n s e r v a t i v e Management o f Renal P i s e a s e , " N u r s i n g C l i n i c s Of North America, 10:438-441, September, 1975. J a n i s , I.L. and S. Feshbach. " E f f e c t s o f F e a r - A r o u s i n g Communications," J o u r n a l o f Abnormal S o c i a l P s y c h o l o g y , 48:78-92, 1953. J a n i s , I.L. and S. Feshbach. " P e r s o n a l i t y D i f f e r e n c e s A s s o c i a t e d With R e s p o n s i v e n e s s t o F e a r - A r o u s i n g Communications," J o u r n a l o f P e r s o n a l i t y , 23: 154-166, 1954. J a n i s , I.L. and R.F. T e r w i l l i g e r n . "An E x p e r i m e n t a l Study o f P s y c h o l o g i c a l R e s i s t a n c e t o F e a r - A r o u s i n g Communications," J o u r n a l o f Abnormal  and S o c i a l P s y c h o l o g y , 65:403-410, 1962. J o e , V . C "Review o f t h e I n t e r n a l - E x t e r n a l C o n t r o l C o n s t r u c t as a P e r s o n a l i t y V a r i a b l e , " P s y c h o l o g i c a l R e p o r t s , 28:619-640, 1971. Johnson, D. " P o w e r l e s s n e s s : A S i g n i f i c a n t Determinant o f P a t i e n t B e h a v i o r ? " J o u r n a l o f N u r s i n g E d u c a t i o n , 6:39-44, A p r i l , 1967. Kaplan De-Nour, A. " P s y c h o t h e r a p y With P a t i e n t s on C h r o n i c H e m o d i a l y s i s , " B r i t i s h J o u r n a l o f P s y c h i a t r y , 116:207-215, 1970. and J.W. C z a c z k e s . "Emotional Problems and R e a c t i o n s o f the M e d i c a l Team i n a C h r o n i c H e m o d i a l y s i s U n i t , " L a n c e t , 11:987-989, 1968. and J.W. C z a c z k e s . " P r o f e s s i o n a l Team O p i n i o n and P e r s o n a l B i a s : A Study o f a C h r o n i c H e m o d i a l y s i s Team," J o u r n a l o f C h r o n i c D i s e a s e , 24:533-537, 1971. and J.W. C z a c z k e s . " P e r s o n a l i t y F a c t o r s i n C h r o n i c H e m o d i a l y s i s P a t i e n t s C a u s i n g Non-Compliance With M e d i c a l Regimen," Psychosomatic  M e d i c i n e , 34:333-344, J u l y - A u g u s t , 1972. , J . S h a l i e l and J.W. C z a c z k e s . "Emotional R e a c t i o n s o f P a t i e n t s on C h r o n i c H e m o d i a l y s i s , " Psychosomatic M e d i c i n e , 30:521-532, 1968. 102 Kassenbaum, G.G. and B.O. Baumann. "Dimensions o f the S i c k Role i n C h r o n i c I l l n e s s , " J o u r n a l o f H e a l t h and Human B e h a v i o r , 6:16-27, S p r i n g , 1965. Landsman, M.K. "The P a t i e n t With C h r o n i c Renal F a i l u r e : A M a r g i n a l Man," A n n a l s o f I n t e r n a l M e d i c i n e , 82:268-270, F e b r u a r y , 1975. L e o n a r d , M.R. " H e a l t h I s s u e s and P r i m a r y N u r s i n g i n Nephrology C a r e , " N u r s i n g C l i n i c s o f North A m e r i c a , 10:413-420, September, 1975. L e v e n t h a l , H., R. S i n g e r , and S. J o n e s . " E f f e c t s o f F e a r and S p e c i f i c i t y o f Recommendation Upon A t t i t u d e s and B e h a v i o r , " J o u r n a l Of P e r s o n a l i t y  and S o c i a l P s y c h o l o g y , 2:20-29, 1965. Levy, N.B. "The P s y c h o l o g y and Care o f the Maintenance H e m o d i a l y s i s P a t i e n t , " H e a r t and Lung, 2:400-405, May-June, 1973. L i n d e r , D.E., J . Cooper, and E.E. J o n e s . " D e c i s i o n a l Freedom as a Determinant o f the R o l e o f I n c e n t i v e Magnitude i n A t t i t u d e Change," J o u r n a l o f P e r s o n a l i t y and S o c i a l P s y c h o l o g y , 6:245-254, 1967. L i p o w s k i , Z . J . " P h y s i c a l I l l n e s s , The I n d i v i d u a l and The Coping P r o c e s s , " P s y c h i a t r y i n M e d i c i n e , 3:91-101, 1972. Mann, L. "Use o f a 'Balance Sheet' P r o c e d u r e t o Improve t h e Q u a l i t y o f P e r s o n a l D e c i s i o n - M a k i n g : A F i e l d Experiment With C o l l e g e A p p l i c a n t s , " J o u r n a l o f V o c a t i o n a l B e h a v i o r , 2:291-300, March, 1972. M a r s t o n , M.V. "Compliance With M e d i c a l Regimens: A Review o f t h e L i t e r a t u r e , " N u r s i n g R e s e a r c h , 19:312-323, J u l y - A u g u s t , 1970. Moore, G.L. " N u r s i n g Response t o the Long-Term D i a l y s i s P a t i e n t , " Nephron, 9:193-199, 1972. Mundinger, M.0. " P r i m a r y Nurse-Role E v o l u t i o n , " N u r s i n g O u t l o o k , 21:642-645, O c t o b e r , 1973. Papper, S. "Renal F a i l u r e , " M e d i c a l C I i n i c s o f North America, 55:335-357, March, 1971. P e t r o n i , F.A. "The I n f l u e n c e o f Age, Sex, and C h r o n i c i t y i n P e r c e i v e d L e g i t i m a c y o f the S i c k R o l e , " S o c i o l o g i c a l and S o c i a l R e s e a r c h , 53:180-193, J a n u a r y , 1969. Q u i n t o n , W.E., D.H. D i l l a r d , and B.H. S c r i b n e r . " C a n n u l a t i o n o f B l o o d V e s s e l s f o r P r o l o n g e d D i a l y s i s , " T r a n s a c t i o n s o f t h e American S o c i e t y  f o r A r t i f i c i a l I n t e r n a l Organs, 6:104-109, 1960. Reichsman, F. and N.B. Levy."Problems i n A d a p t a t i o n t o Maintenance H e m o d i a l y s i s , " A r c h i v e s o f I n t e r n a l M e d i c i n e , 130:859-865, December, 1972. R o t t e r , J.B. " G e n e r a l i z e d E x p e c t a n c i e s f o r I n t e r n a l Versus E x t e r n a l C o n t r o l o f R e i n f o r c e m e n t , " P s y c h o l o g i c a l Monographs, 80:1-28, 1966. 103 S a n t o p i e t r o , M.S. "Meeting t h e Emotional Needs o f H e m o d i a l y s i s P a t i e n t s and T h e i r Spouses," American J o u r n a l o f N u r s i n g , 75:629-632, A p r i l , 1975. Schulman, B.H. " P s y c h o l o g i c a l D i s t u r b a n c e s Which I n t e r f e r e With t h e P a t i e n t ' s C o o p e r a t i o n , " P s y c h o s o m a t i c s , 5:213-220, J u l y - A u g u s t , 1964. Seeman, M. "On the Meaning o f A l i e n a t i o n , " American S o c i o l o g i c Review, 24:783-791, December, 1959. . "P o w e r l e s s n e s s and Knowledge: A Comparative Study o f A l i e n a t i o n and L e a r n i n g , " S o c i o m e t r y , 30:105-123, 1967. Sh a l d o n , S. "Independence i n Maintenance H e m o d i a l y s i s , " L a n c e t , 11:520-525, 1968. Shea, E . J . e t a l . " H e m o d i a l y s i s f o r C h r o n i c Renal F a i l u r e : IV, Psycho-l o g i c a l C o n s i d e r a t i o n s , " A n n a l s o f I n t e r n a l M e d i c i n e , 62:558-563, 1965. S h o r t , N.J. and W.P. W i l s o n . "Roles o f D e n i a l i n C h r o n i c H e m o d i a l y s i s , " A r c h i v e s o f General P s y c h i a t r y , 20:433-437, A p r i l , 1969. Stimson, G.V.."Obeying D o c t o r ' s O r d e r s : A View From the Ot h e r S i d e , " S o c i a l S c i e n c e i n M e d i c i n e , 8:97-104, F e b r u a r y , 1974. S t o k e s , G.S., M.K. Mani, and J.H. Stewart. "Relevance o f S a l t , Water and Renin t o H y p e r t e n s i o n i n C h r o n i c Renal F a i l u r e , " B r i t i s h M e d i c a l  J o u r n a l , 3:126-129, J u l y 18, 1970. Twaddle, A.C. " H e a l t h D e c i s i o n s and S i c k Role V a r i a t i o n s , " J o u r n a l o f  H e a l t h and Human B e h a v i o r , 10:105-115, May, 1969. V e r t e s , V. "Management o f H y p e r t e n s i o n A s s o c i a t e d With C h r o n i c Renal F a i l u r e , " P o s t - G r a d u a t e M e d i c i n e , 53:123-126, F e b r u a r y , 1972. Viederman, M. " A d a p t i v e and M a l a d a p t i v e R e g r e s s i o n i n H e m o d i a l y s i s , " P s y c h i a t r y , 37:68-77, F e b r u a r y , 1974. V i n c e n t , P. "Do We Want P a t i e n t s to Conform?" N u r s i n g O u t l o o k , 18:54-55, J a n u a r y , 1970. . " F a c t o r s I n f l u e n c i n g Non-Compliance: A T h e o r e t i c a l Approach," N u r s i n g R e s e a r c h , 20:509-516, November-December, 1971. Wals e r , D. " B e h a v i o r a l E f f e c t s o f D i a l y s i s , " The Canadian Nurse, 70:23-25, May, 1974. Watts, D.D. " F a c t o r s R e l a t e d t o t h e A c c e p t a n c e o f Modern M e d i c i n e , " American J o u r n a l o f P u b l i c H e a l t h , 56:1205-1212, August, 1966. Wijsenbeek, A., and A. M u n i t z . "Group Treatment i n a H e m o d i a l y s i s C e n t e r , " P s y c h i a t r y , Neurology and N e u r o s u r g e r y , 73:213-220, 1970. Winokur, M.Z., J.W. C z a c z k e s , and A. Kaplan De-Nour. " I n t e l l i g e n c e and Adjustment t o C h r o n i c H e m o d i a l y s i s , " J o u r n a l o f Psychosomatic  R e s e a r c h , 17:29-34, J a n u a r y , 1973. 104 W r i g h t , R.G., P. Sand, and G. L i v i n g s t o n e . " P s y c h o l o g i c a l S t r e s s D u r i n g H e m o d i a l y s i s f o r C h r o n i c Renal F a i l u r 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 , 64:611-613, August, 1966. Zahn, J . "Some A d u l t A t t i t u d e s A f f e c t i n g L e a r n i n g : P o w e r l e s s n e s s , C o n f l i c t i n g Needs, and Role T r a n s i t i o n , " A d u l t E d u c a t i o n J o u r n a l , 19:91-97, M a r c h - A p r i l , 1969. UNPUBLISHED MATERIAL Chidoda, S.M. " A D e s c r i p t i v e Study o f Compliance With M e d i c a l Regimen: D i a l y s i s and D i a b e t i c P a t i e n t s . " U n p u b l i s h e d M a s t e r ' s T h e s i s , M c G i l l U n i v e r s i t y , 1976. G o l d s t e i n , A.M. " D e n i a l as a F u n c t i o n o f I n t e r n a l - E x t e r n a l C o n t r o l i n C h r o n i c Renal F a i l u r e . " U n p u b l i s h e d d o c t o r a l d i s s e r t a t i o n , Fordham U n i v e r s i t y , New York, 1971. Johnson, W.L. " C o n f o r m i t y t o M e d i c a l Recommendations i n Coronary Heart D i s e a s e . " Paper p r e s e n t e d a t the American S o c i o l o g i c a l A s s o c i a t i o n m e e t i n g , September 2, 1965, C h i c a g o , 111. P i e r c e , P.H. " I n f l u e n c e o f a N u r s e - P a t i e n t R e l a t i o n s h i p Upon H e m o d i a l y s i s P a t i e n t s ' D e c i s i o n t o Adhere t o a D i e t as a Task o f A d a p t a t i o n . " U n p u b l i s h e d M a s t e r ' s T h e s i s , Y a l e U n i v e r s i t y , 1975. APPENDIXES 105 106 APPENDIX A BALANCE SHEET PROCEDURE E x p l a n a t i o n t o the p a t i e n t : S t u d i e s have shown t h a t p e o p l e can b e n e f i t from l o o k i n g c a r e f u l l y a t a l l t h e p o s s i b l e r e s u l t s o f any a c t i v i t y t h e y a r e c o n s i d e r i n g , both t h e good r e s u l t s and the bad ones. I would l i k e you t o c o n s i d e r a l l t he p o s s i b l e e f f e c t s f o r y o u r s e l f and peo p l e i m p o r t a n t t o y o u , t h a t o c c u r when you ' s t i c k ' t o y o u r d i e t and f l u i d r e s t r i c t i o n s and when you do n o t ' s t i c k ' t o them. F o r each c a t e g o r y mentioned, t r y t o t h i n k o f as many outcomes as p o s s i b l e . The n e g a t i v e o r u n d e s i r a b l e outcomes a r e j u s t as i m p o r t a n t as the good r e s u l t s you e x p e c t . Remember, t h e r e a r e no r i g h t o r wrong answers. (The f o l l o w i n g two pages p r e s e n t t h e B a l a n c e Sheet P r o c e d u r e i n t h e form g i v e n t o t h e p a t i e n t s . The f i r s t page i n c l u d e d t h e p o s i t i v e and n e g a t i v e outcomes t h a t the. p a t i e n t a n t i c i p a t e d as a r e s u l t o f a d h e r i n g t o h i s d i e t and f l u i d r e s t r i c t i o n s , and t h e second page the p o s i t i v e and n e g a t i v e outcomes a n t i c i p a t e d as a r e s u l t o f n o t a d h e r i n g t o t h e d i e t and f l u i d r e s t r i c t i o n s . ) 107 I n c l u d e here a l l t he outcomes you can t h i n k o f t h a t would o c c u r when you f o l l o w e d y o u r d i e t and f l u i d r e s t r i c t i o n s : GAINS TO SELF LOSSES TO SELF GAINS FOR IMPORTANT OTHERS LOSSES FOR IMPORTANT OTHERS APPROVAL FROM'IMPORTANT OTHERS DISAPPROVAL FROM' IMPORTANT' OTHERS SELF-APPROVAL SELF-DISAPPROVAL I n c l u d e here a l l t he outcomes you can t h i n k o f t h a t would o c c u r when you d i d not f o l l o w y o u r d i e t and f l u i d r e s t r i c t i o n s : GAINS TO SELF LOSSES TO SELF GAINS FOR IMPORTANT OTHERS LOSSES FOR IMPORTANT OTHERS APPROVAL FROM IMPORTANT OTHERS DISAPPROVAL FROM IMPORTANT OTHERS SELF-APPROVAL SELF-DISAPPROVAL APPENDIX B GOAL SETTING CONTRACT My weight g a i n s between d i a l y s e s w i l l not exceed: Kg./day My p r e - d i a l y s i s serum p o t a s s i u m w i l l not exceed: mEq/L. Date: S i g n a t u r e : n o APPENDIX C WELL-BEING RATING SCALE E x p l a n a t i o n t o the p a t i e n t : The purpose o f t h i s s c a l e i s t o g i v e me an i d e a o f how much o r how o f t e n t h e outcomes you have l i s t e d on t h e Bal a n c e Sheet o c c u r r e d i n between each d i a l y s i s . I f many o f the good outcomes o c c u r r e d , and few o f t h e bad ones d i d , you p r o b a b l y f e l t b e t t e r , and t h e r e f o r e y o u r w e l l - b e i n g was g r e a t e r . The f o l l o w i n g q u e s t i o n s r e f e r t o y o u r e v a l u a t i o n o f t h e p a s t two o r t h r e e days s i n c e y o u r l a s t d i a l y s i s . F o r each q u e s t i o n , i n d i c a t e your:.answer by c i r c l i n g ' t h e riumber t h a t most; c l o s e l y ' e s t i m a t e s how. you f e e l . Number one means "not v e r y w e l l " o r " v e r y seldom" p r o g r e s s i n g t o number f i v e which means "v e r y w e l l " o r " a l l o f the t i m e " . The v a l u e f o r each answer i s g i v e n i n b r a c k e t s below the f i r s t s e t o f numbers. 1. How w e l l were you a b l e t o " s t i c k " t o y o u r d i e t ? 2. How w e l l were you a b l e t o r e s t r i c t y o u r f l u i d i n t a k e ? 3. How w e l l d i d you f e e l p h y s i c a l l y ? 4. How much o r how o f t e n d i d the "g a i n s t o s e l f " o c c u r ? 5. How much o r how o f t e n d i d t h e " l o s s e s t o s e l f " o c c u r ? 6. How much o r how o f t e n do you f e e l t he " g a i n s t o i m p o r t a n t o t h e r s " o c c u r r e d ? 1 2 3 4 5 1) (2) (3) (4) (5) 1 2 3 4 5 1) (2) (3) (4) (5) 1. 2 3 4 5 1) (2) (3) (4) (5) 1 2 3 4 5 1) (2) (3) (4) (5) 1 2 3 4 5 5) (4) (3) (2) (1) 1 2 3 4 . 5 1) (2) (3) (4) (5) m 7. How much o r how o f t e n do you f e e l 8. th e " l o s s e s t o i m p o r t a n t o t h e r s " o c c u r r e d ? How much o r how o f t e n d i d you f e e l 1 (5) 2 (4) 3 (3) 4 (2) 5 (1) 9. a p p r o v a l from i m p o r t a n t o t h e r s ? How much o r how o f t e n d i d you f e e l 1 (1) 2 (2) 3 (3) 4 (4) 5 (5) d i s a p p r o v a l from s i g n i f i c a n t o t h e r s ? 1 (5) 2 (4) 3 (3) 4 (2) 5 (1) 10. How much o r how o f t e n d i d you f e e l s a t i s f i e d o r happy w i t h y o u r s e l f o r y o u r b e h a v i o r ? 1 (1) 2 (2) 3 (3) 4 (4) 5 (5) 11. How much o r how o f t e n d i d you d i s -approve o f o r were you d i s a p p o i n t e d w i t h y o u r s e l f o r y o u r b e h a v i o r ? 1 (5) 2 (4) 3 (3) 4 (2) 5 (1) 12. A l l t h i n g s c o n s i d e r e d , how would you . r a t e the p a s t two days? 1 (1) 2 (2) 3 (3) 4 (4) 5 (5) TOTAL: 112 APPENDIX D CONSENT FORM I , h e r e b y a g r e e t o p a r t i c i p a t e as a s u b j e c t i n the s t u d y b e i n g c a r r i e d o u t by J a n i c e L. McCormick, R.N. The terms and purpose o f t h i s s t u d y have been f u l l y e x p l a i n e d t o me as i n d i c a t e d below: I w i l l be i n t e r v i e w e d by M i s s McCormick a t the b e g i n n i n g o f the stu d y and w i l l be asked t o f i l l o ut a form. T h e r e a f t e r , a t each d i a l y s i s I w i l l be asked t o complete a b r i e f q u e s t i o n a i r e f o r a p e r i o d o f f i v e weeks. ( T h i s s e c t i o n was o m i t t e d i n the c o n s e n t forms g i v e n t o the C o n t r o l group p a t i e n t s ) . I agree t o a l l o w one (1) m i l l i l i t e r o f b l o o d t o be taken a t t h e b e g i n n i n g o f each d i a l y s i s f o r the purpose o f serum p o t a s s i u m d e t e r m i n a -t i o n , f o r a p e r i o d not t o exceed e i g h t (8) weeks. The r e s u l t s o f t h i s t e s t w i l l be shown to me. My pre and p o s t d i a l y s i s w e i g h t s w i l l a l s o be r e c o r d e d . I agree t o a l l o w M i s s McCormick t o examine my c h a r t t o r e c o r d i n f o r m a t i o n on v i t a l s t a t i s t i c s . I u n d e r s t a n d t h a t a t no time w i l l p e r s o n a l i n f o r m a t i o n t h a t would i d e n t i f y me be r e c o r d e d o r used i n the w r i t t e n r e p o r t o f t h i s s t u d y , and I may choose t o withdraw from the st u d y a t any time. Upon c o m p l e t i o n o f t h e s t u d y , t he r e s u l t s and c o n c l u s i o n s w i l l be made a v a i l a b l e t o me. Date Signed_ A t t e n d i n g p h y s i c i a n Witness 113 APPENDIX E MEASUREMENT OF DEPENDENT VARIABLES The .techniques used t o d e t e r m i n e between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s were as f o l l o w s : Between d i a l y s e s w e i g h t g a i n s : - T h i s was d e f i n e d as t h e d i f f e r e n c e between t h e p a t i e n t ' s p r e - d i a l y s i s w e i g h t and h i s most r e c e n t p o s t - d i a l y s i s w e i g h t . The p r a c t i c e i n the r e n a l u n i t i n which t h i s s t u d y took p l a c e was f o r p a t i e n t s t o weigh themselves pre and p o s t d i a l y s i s . A l l p a t i e n t s had been i n s t r u c t e d i n t h e p r o p e r p r o c e d u r e f o r o b t a i n i n g a c c u r a t e weight measurements. T h i s p r o c e d u r e i n v o l v e d : / 1. " z e r o i n g " t h e s c a l e b e f o r e each use 2. moving a w e i g h t e d bar a l o n g a s c a l e u n t i l t he marker was a l i g n e d i n the c e n t r a l p o s i t i o n . P a t i e n t s had been i n s t r u c t e d t o wear the same c l o t h i n g f o r both the p r e - d i a l y s i s and p o s t - d i a l y s i s measurements. Weights were o b t a i n e d i n k i l o g r a m s , t o one decimal p l a c e . A t the b e g i n n i n g o f the s t u d y , the i n v e s t i g a t o r o b s e r v e d a l l p a t i e n t s complete t h i s p r o c e s s t o ensure t h a t the c o r r e c t p r o c e d u r e was u n d e r s t o o d and p r a c t i c e d ; t h e r e a f t e r , t h e p a t i e n t s made t h e d e t e r m i n a t i o n s u n a s s i s t e d , and r e p o r t e d t h e amount on t h e i r d a i l y d i a l y s i s s h e e t . P r e - d i a l y s i s serum p o t a s s i u m - One m i l l i l i t e r o f b l o o d was o b t a i n e d from each p a t i e n t i m m e d i a t e l y b e f o r e d i a l y s i s and p l a c e d i n a d r y t e s t t ube t o which no a n t i c o a g u l a n t was added. The specimens were s t o r e d a t room tem p e r a t u r e u n t i l a n a l y z e d . T h i s s t o r a g e t i m e d i d n o t exceed t h r e e h o u r s . Whitby e t a l . r e p o r t t h a t p o t a s s i u m i s r e l e a s e d from t h e e r y t h r o c y t e s 114 when b l o o d samples a r e r e f r i g e r a t e d o r l e f t f o r l o n g p e r i o d s . The amount o f p o t a s s i u m r e l e a s e d from the c e l l s i s n e g l i g i b l e u n t i l about f o u r hours o f s t o r a g e . 1 A l l specimens were a n a l y z e d by t h e i n v e s t i g a t o r u s i n g an a u t o -mated flame photometer, which measured p o t a s s i u m and sodium s i m u l t a n e o u s l y . Thorough i n s t r u c t i o n s and d e m o n s t r a t i o n s o f the t e c h n i q u e were o b t a i n e d from the l a b o r a t o r y s t a f f . T h i s p r o c e d u r e was as f o l l o w s : 1. c e n t r i f u g i n g t he whole b l o o d 2. a s p i r a t i n g an a l i q u o t ( 0.5 ml.) o f serum 3. " z e r o i n g " t h e f l a m e photometer w i t h l i t h i u m s u l f a t e 4. s e t t i n g t he sodium and p o t a s s i u m r e a d o u t w i t h a s t a n d a r d s o l u t i o n o f known sodium and p o t a s s i u m c o n c e n t r a t i o n 5. t e s t i n g t he r e s u l t s o f the h i g h sodium and p o t a s s i u m and low sodium and p o t a s s i u m s t a n d a r d s o l u t i o n s 6. r u n n i n g t h e p a t i e n t samples. L.G. Whitby, T.W. Percy-Robb and A.F. Smith,. L e c t u r e Notes on  C l i n i c a l C h e m i s t r y , ( L o n d o n : B l a c k w e l l S c i e n t i f i c P u b l i c a t i o n s , 1975), p.153. 115 APPENDIX F FACE SHEET Patient cu CD . X cu CO Marital Status Education (years) Employment Status Months Since Last Employment Length of Illness (years) Length of Time on Dialysis (months) E l 2 3 4 5 6 7 8 C 1 2 3 4 5, 6 7 8 116 APPENDIX G INTERVIEW GUIDE E x p l a n a t i o n t o p a t i e n t : I am d o i n g a s t u d y about t h e d i e t and f l u i d r e s t r i c t i o n s o f d i a l y s i s p a t i e n t s and t r y i n g t o l o o k a t a d i f f e r e n t way o f how nurses can h e l p p a t i e n t s keep t h e i r weight g a i n s and p o t a s s i u m l e v e l s down. What I p l a n t o do i n t h i s i n t e r v i e w i s t o ask you some q u e s t i o n s about y o u r d i e t and f l u i d r e s t r i c t i o n s t o f i n d out any problems you may be h a v i n g and then f i n d out from you what weight g a i n s and po t a s s i u m l e v e l s you c o n s i d e r s a t i s f a c t o r y f o r y o u r s e l f and would l i k e t o aim f o r . 1. What k i n d s o f t h i n g s a r e i m p o r t a n t t o you? What a r e y o u r p l a n s f o r the f u t u r e ? 2. What t h i n g s a r e n e c e s s a r y f o r you t o do i n o r d e r t o re a c h y o u r g o a l s o r p l a n s ? 3. Which p e o p l e a r e most i m p o r t a n t t o you? 4. What a r e y o u r d i e t and f l u i d r e s t r i c t i o n s ? 5. What d i f f i c u l t i e s , i f any, have you had i n the p a s t w i t h y o u r r e s t r i c t i o n s ? 6. What p a r t ( s ) o f the r e s t r i c t i o n s do you f i n d most d i f f i c u l t ? 7. How much weig h t do you u s u a l l y g a i n between d i a l y s e s ? 8. What i s the ' s a f e ' range f o r potassium? What happens when t h e po t a s s i u m l e v e l i s v e r y high? 9. What was y o u r p o t a s s i u m l e v e l t h e l a s t t i m e you had i t t e s t e d ? Do you t r y t o aim f o r a c e r t a i n p o t a s s i u m l e v e l ? I f s o , what? 10. Do you t r y t o aim f o r a c e r t a i n weight g a i n i n between d i a l y s e s ? I f so, what? 117 11. What i s y o u r d r y weight? 12. Do you have y o u r own k i d n e y s ? What i s y o u r e s t i m a t e d d a i l y u r i n e o u t p u t ? 118 APPENDIX H PROGRESS SHEET E x p l a n a t i o n t o the P a t i e n t : Each p a t i e n t i n the E x p e r i m e n t a l group was g i v e n a P r o g r e s s Sheet, which was a graph w i t h a space p r o v i d e d t o p l o t h i s weight g a i n , p o t a s s i u m l e v e l , and W e l l - B e i n g S c o r e f o r each d i a l y s i s d u r i n g t h e I n t e r v e n t i o n Phase. The g o a l s t h e p a t i e n t had e s t a b l i s h e d f o r between d i a l y s e s w e i g h t g a i n s and p r e - d i a l y s i s serum p o t a s s i u m l e v e l s were marked on the graph i n r e d i n k so t h a t the p a t i e n t c o u l d e a s i l y see h i s p r o g r e s s toward h i s g o a l s . P a t i e n t s were i n s t r u c t e d i n t h e use o f t h e P r o g r e s s Sheet, which i n v o l v e d p l a c i n g an "x" on t h e graph t o i n d i c a t e h i s weight g a i n and p o t a s s i u m l e v e l a t each d i a l y s i s . T h i s p r o c e d u r e was completed b e f o r e the p a t i e n t answered the W e l l - B e i n g R a t i n g S c a l e . When the l a t t e r form had been completed, the p a t i e n t p l a c e d h i s W e l l - B e i n g S c o r e i n the space a t the bottom o f the P r o g r e s s Sheet. Thus, t h e P r o g r e s s Sheet s e r v e d as a r e c o r d i n g t o o l f o r the d a t a , and as a v i s u a l i n d i c a t o r t o the p a t i e n t o f h i s p r o g r e s s o v e r the I n t e r v e n t i o n Phase. A sample o f t h e graph i s i n c l u d e d , w i t h f i c t i t i o u s d a t a and g o a l s t o demonstrate the f u n c t i o n o f t h i s t o o l . 8.0 7.5 7.0 6.5 6.0 Pre-D i a l y s i s Serum 5.5 Potassium g Q 4.5 4.0 3.5 3.0 2.5 2.0 1.5 1.0 .5 0 Weight Gains Between D i a l y s e s X *^•^*•^'•*^•^4^*•*•*^*^*^  x x x ,*****ii ******\******\k************l. ****ii X tie******] W e l l - B e i n g Score 39 41 34 40 45 43 47 44 32 36 38 41 43 47 45 D i a l y s i s Number 10 11 12 13 14 15 PROGRESS SHEET 

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