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Colostomy patients' identification of learning needs in the early rehabilitation period Bain Keirstead, Gail Sandra 1989

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COLOSTOMY PATIENTS' IDENTIFICATION OF LEARNING NEEDS IN THE EARLY REHABILITATION PERIOD By GAIL SANDRA BAIN KEIRSTEAD B.A., Concordia U n i v e r s i t y , Montreal, 1978 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (School of Nursing) We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1989 (<F)Gail Sandra Bain K e i r s t e a d , 1989 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada Date Q/lA/l a /?if DE-6 (2/88) i i ABSTRACT The c r e a t i o n of a permanent colostomy has i m p l i c a t i o n s f o r the p h y s i c a l and p s y c h o s o c i a l w e l l b e i n g of the i n d i v i d u a l . S t u d i e s reviewed have suggested t h a t e f f e c t i v e p a t i e n t t e a c h i n g i s a way of a s s i s t i n g i n d i v i d u a l s to develop coping s t r a t e g i e s to manage the p h y s i c a l changes i n the body and p a t t e r n s of s o c i a l and emotional i n t e r a c t i o n . T h i s d e s c r i p t i v e study i s based on the theory t h a t the a d u l t i s able to s e l f - d i a g n o s e l e a r n i n g needs and a c t i v e l y p a r t i c i p a t e i n the pl a n n i n g of l e a r n i n g to meet these needs. Data were c o l l e c t e d and analyzed to i d e n t i f y the l e a r n i n g needs and resource u t i l i z a t i o n of p a t i e n t s with a newly c r e a t e d permanent colostomy from t h e i r p e r s p e c t i v e . P a t i e n t i n t e r v i e w s were conducted with e i g h t p a r t i c i p a n t s ten to twenty-one days p o s t d i s c h a r g e from h o s p i t a l , using a s e m i s t r u c t u r e d i n t e r v i e w guide developed by the r e s e a r c h e r . F i n d i n g s of the study suggested t h a t p a r t i c i p a n t s were able to s e l f - d e f i n e the knowledge and s k i l l s t h a t allowed them to develop p o s i t i v e coping behaviors to manage t h e i r newly c r e a t e d permanent colostomy. Themes which emerged from the data c o l l e c t e d were the need to get on with l i f e , the person's need to t e l l " t h e i r s t o r y " to r e i n f o r c e t h e i r i n d i v i d u a l i t y , and the need to develop mastery over the p h y s i c a l a spects of stoma c a r e . i v TABLE OF CONTENTS ABSTRACT i i TABLES . . • v i i ACKNOWLEDGEMENTS v i i i CHAPTER I INTRODUCTION . 1 Background to the study 4 Problem and Purpose of the study 7 Problem 7 Purpose 8 UBC Model f o r Nursing 9 D e f i n i t i o n s 10 Assumptions 11 L i m i t a t i o n s 12 Summary 13 II REVIEW OF RELATED LITERATURE 14 P a t i e n t education programs 14 Studies s p e c i f i c a l l y i d e n t i f y i n g l e a r n i n g needs of colostomy p a t i e n t s 21 Adul t l e a r n i n g 26 A t h e o r e t i c a l framework f o r p a t i e n t needs assessment 32 V I I I METHODOLOGY 3 8 Research design 38 S e l e c t i o n of p a r t i c i p a n t s 38 Procedure 42 Sample 44 Data c o l l e c t i o n 44 Data a n a l y s i s 46 IV FINDINGS OF THE STUDY 48 I d e n t i f i c a t i o n of new knowledge and s k i l l s needed to cope with the colostomy 51 Care of the colostomy 51 Di e t and c o n t r o l of bowel movements 54 A c t i v i t y i n and o u t s i d e the home 59 Pa i n 61 Family & s o c i a l r e l a t i o n s h i p s 63 Sexual r e l a t i o n s h i p s 66 Information r e l a t e d to d i a g n o s i s or prognosis 67 I d e n t i f i c a t i o n of resources used by p a r t i c i p a n t s 69 Adequacy and t i m i n g of i n f o r m a t i o n 73 Unmet l e a r n i n g needs 78 The importance of support systems 81 v i V SUMMARY, CONCLUSIONS, IMPLICATIONS AND RECOMMENDATIONS 8 4 Summary 84 Metho d o l o g i c a l i s s u e s ' 88 Conclusions 89 I m p l i c a t i o n s 93 Recommendations f o r f u r t h e r r e s e a r c h 96 REFERENCES 9 8 APPENDICES I The Dukes c l a s s i f i c a t i o n of lar g e bowel cancers 103 II Comparison of pedagogical and an d r a g o g i c a l t e a c h i n g s t y l e s 104 III The UBC Nursing Model 105 IV Information l e t t e r to p a r t i c i p a n t s . . . . . . 106 V Consent form f o r r e s e a r c h study 108 VI Interview guide 109 TABLES V i i Table I: C o r r e l a t i o n between the UBC Nursing Model and the IAET Standards 37 v i i i ACKNOWLEDGEMENTS I would l i k e to acknowledge the a s s i s t a n c e and d i r e c t i o n provided by the members of my t h e s i s committee, S h e i l a Stanton and Janet Gormick, whose p a t i e n c e , f l e x i b i l i t y , and expert guidance made the experience a p o s i t i v e one. And I owe a very s p e c i a l thank you to the p a t i e n t s who p a r t i c i p a t e d i n the study, who shared t h e i r f e a r , pain and hopes for the f u t u r e , so that t h e i r experience might help o t h e r s . I am a l s o g r a t e f u l f o r the a s s i s t a n c e provided by the enterostomal t h e r a p i s t s a t the study h o s p i t a l s . T h e i r enthusiasm f o r the study never waned as they continued to s o l i c i t candidates over the s i x months of data c o l l e c t i o n . I have been f o r t u n a t e to have an employer who was s u p p o r t i v e , f l e x i b l e , and never f a i l e d to provide a s s i s t a n c e where p o s s i b l e . Thank you, Lynda. F i n a l l y , I would l i k e to thank my husband, John, who shared my a n x i e t i e s , encouraged me, and spent many hours t y p i n g t h i s manuscript. His support was "above and beyond". Chapter One 1 J e t e r (1979) has d e s c r i b e d the c r e a t i o n of an ostomy i n Freudian terms: "To de p r i v e a person of f e c a l . . . c o n t r o l i s , perhaps, the most b r u t a l rape of the ego" (p. 73). Q u a l i t y of l i f e f o r the person with a permanent colostomy i s much more than having a stoma t h a t Is w e l l p l a c e d and pouchable, i t Is s u c c e s s f u l r e h a b i l i t a t i o n t h a t g i v e s both p h y s i c a l and mental comfort. Nursing's r o l e i n the r e h a b i l i t a t i o n process i s to a s s i s t the person with a colostomy to r e v i s e p r e e x i s t i n g a t t i t u d e s , to develop coping s t r a t e g i e s , and to strengthen e x i s t i n g support systems so t h a t r e h a b i l i t a t i o n i s f a c i l i t a t e d . Those i n d i v i d u a l s with a permanent colostomy are r e q u i r e d to make l i f e s t y l e changes and develop coping s t r a t e g i e s t h a t w i l l m aintain them f o r the remainder of t h e i r l i v e s . E f f e c t i v e p a t i e n t t e a c h i n g i s a way of a s s i s t i n g i n d i v i d u a l s to develop coping s t r a t e g i e s to manage the emotional response to d i a g n o s i s , p h y s i c a l changes i n the body, an a l t e r a t i o n of normal e l i m i n a t i o n p a t t e r n s , and p a t t e r n s of s o c i a l i n t e r a c t i o n (Dobkin & Broadwell, 1986). 2 Snipes (1987) i d e n t i f i e d s o c i e t a l norms f o r the body — t h a t i t be young, he a l t h y , f u l l y - f u n c t i o n i n g , c o n t i n e n t , and odor f r e e . In s t u d y i n g the p s y c h o s o c i a l i s s u e s of the person with a colostomy, Shipes c a t e g o r i z e d the i s s u e s as body image a l t e r a t i o n , r e a c t i o n s to the d i a g n o s i s and ostomy, and l o s s e s . According to Shipes, body image r e l a t e s to how we see o u r s e l v e s , how we look, and how we f u n c t i o n . The i n t e r p e r s o n a l s e l f r e f e r s to our r e l a t i o n s h i p with o t h e r s , the a c h i e v i n g s e l f to p r o d u c t i v i t y , and the i d e n t i f i c a t i o n s e l f to s p i r i t u a l and e t h i c a l b e l i e f s , values and b e h a v i o r s . The usual shortness of time between d i a g n o s i s , s u r g e r y to c r e a t e a stoma, and i t s inherent problems does not a l l o w f o r a gradual change In body image such as one f i n d s i n the normal aging process. Reactions to the a l t e r e d body image i n c o r p o r a t e l o s s of body i n t e g r i t y and c o n t r o l . Emotional r e a c t i o n s are s i m i l a r to the g r i e f process a s s o c i a t e d with death (Shipes, 1987). An i n d i v i d u a l ' s past experience, i n c l u d i n g p a t t e r n s f o r d e a l i n g with l i f e ' s problems, w i l l Impact on how the problems of l i f e with a colostomy w i l l be managed. P e r s o n a l i t y c h a r a c t e r i s t i c s such as ego s t r e n g t h , p o s i t i v e s e l f - c o n c e p t , p o s i t i v e coping 3 s k i l l s , h igh m o t i v a t i o n and a b i l i t y to l e a r n new s k i l l s e a s i l y , and an i n t e r n a l locus of c o n t r o l , combined with h e a l t h y r e l a t i o n s h i p s and a s t a b l e economic s t a t u s , w i l l l i k e l y l e a d to good p s y c h o l o g i c a l adjustment. These c h a r a c t e r i s t i c s are c o n s i d e r e d as p o s i t i v e f o r c e s i n the person's l i f e . Those i n d i v i d u a l s who e x h i b i t the opposite c h a r a c t e r i s t i c s , and have unhealthy r e l a t i o n s h i p s , an unstable economic s t a t u s , and who r e j e c t c o u n s e l l i n g , have negative f o r c e s which w i l l impact on t h e i r a b i l i t y to l e a r n new coping s t r a t e g i e s (Shipes, 1987). Other i m p l i c a t i o n s which should be c o n s i d e r e d are the p h y s i c a l and p s y c h o l o g i c a l components of growth and development. The m a j o r i t y of permanent co l o s t o m i e s are c r e a t e d i n males over the age of 50 (Jackson & Broadwell, 1986). I t i s e s s e n t i a l to i d e n t i f y which changes are due to aging, and which to d i s e a s e . As i n d i v i d u a l s age, there a l r e a d y e x i s t s a fear of change from independence and p r o d u c t i v i t y to dependence and c u r t a i l m e n t of a c t i v i t y . T h i s f e a r i s inc r e a s e d by an unplanned event which may i n c r e a s e dependency, i f on l y t e m p o r a r i l y , on others (Motta, 1987). 4 Background to the Study A permanent colostomy i s d e f i n e d as the permanent formation of an a r t i f i c i a l anus by b r i n g i n g the c o l o n through the abdominal w a l l to the e x t e r i o r . The c o n t i n u i t y of the bowel cannot be r e s t o r e d i n the f u t u r e . Surgery to c r e a t e t h i s permanent stoma i s performed p r i m a r i l y f o r low r e c t a l carcinoma l o c a t e d w i t h i n f i v e centimetres of the anus ( E l l i s , 1 9 8 7 ) . The s u r g i c a l procedure of choice was, u n t i l j u s t r e c e n t l y , the abdominal p e r i n e a l r e s e c t i o n . T h i s e x t e n s i v e procedure, f i r s t performed In 1908 by a B r i t i s h surgeon by the name of M i l e s (Coogan-Bland & T o l i n s , 1979), c r e a t e s a permanent colostomy, removes not o n l y the tumor, but other t i s s u e as w e l l to accommodate p o s s i b l e l a t e r a l and v e r t i c a l spread of the tumor and removes the a n a l s p h i n c t e r . The purpose of the o p e r a t i o n i s to remove the rectum, the s i t e of the tumor, the anus, the d i s t a l c o l o n , the perineum and p e r i r e c t a l t i s s u e s , and the mesentery of the sigmoid c o l o n . T h i s i n c l u d e s three areas of r e g i o n a l lymphatic spread. The surgery i s o f t e n p a l l i a t i v e , s i n c e the rectum i s a v a s c u l a r area, and cancer of 5 the rectum spreads by blood vessel Invasion. Secondary tumors may present at d i s t a l s i t e s ( E l l i s , 1987) . More recently, surgeons are attempting to preserve the sphincter without jeopardizing chances of prolongation of l i f e (Gordon & Dalrymple, 1987). Anal preservation has been assisted by surgical techniques which f a c i l i t a t e lower anastomosis without compromising care. Conservative surgeons have been concerned that restorative resection (preservation of the anal sphincter without the requirement of a permanent stoma) was promoted by the patients' reje c t i o n of the procedure and the underlying f e e l i n g of the surgeon that a colostomy is d i s t a s t e f u l . "The surgeon holds that colostomy i s such an unpleasant a f f l i c t i o n that is is j u s t i f i a b l e to accept some lessening of the chances of complete eradication of the tumor in order to avoid i t " ( E l l i s , 1987, p. 1471). Recent studies by E l l i s (1987), Gordon and Dalrymple (1987), and Heald and Chir (1987), on survival rates for both anterior resection (no requirement for stoma, and preservation of the anal sphincter) and abdominal perineal resection (permanent colostomy with no sphincter preservation) are 6 comparable. E l l i s does c a u t i o n the reader that the more f a v o r a b l e tumors, as c l a s s i f i e d by Dukes (Appendix I ) , were t r e a t e d by a n t e r i o r r e s e c t i o n , and t h i s may account f o r the lack of d i f f e r e n c e i n f i v e - y e a r s u r v i v a l r a t e s ( E l l i s , 1987). Present c r i t e r i a f o r abdominal p e r i n e a l r e s e c t i o n i n c l u d e a c t u a l i n v a s i o n of the a n o r e c t a l r i n g by the tumor or the i n a b i l i t y of the surgeon a t . o p e r a t i o n to a p ply a clamp d i s t a l to the tumor a f t e r m o b i l i z a t i o n (Heald & C h i r , 1987). A major drawback to s u r g i c a l anastomosis i s anastomotic leakage r e q u i r i n g a second surgery and c r e a t i n g the p o t e n t i a l f o r p e r i t o n i t i s . In summary, the m a j o r i t y of cancers r e q u i r i n g a permanent colostomy are found i n the d i s t a l rectum or up to f i v e c e n t imetres above the rectum. A d d i t i o n a l c o n s i d e r a t i o n s i n c l u d e the requirement f o r a wide r e s e c t i o n f o r removal of the cancer, causing i n t e r f e r e n c e with r e c t a l s p h i n c t e r c o n t r o l ; i n v a s i v e , p o o r l y d i f f e r e n t i a t e d m i d r e c t a l cancer i n obese p a t i e n t s ; or p a t i e n t s with a narrow p e l v i s , making tumor r e s e c t i o n with end-to-end anastomosis d i f f i c u l t or u n d e s i r a b l e (Dobkin & Broadwell, 1986). Although the primary medical i n t e r v e n t i o n f o r r e c t a l tumors i s s u r g i c a l , both r a d i a t i o n therapy and chemotherapy are i n c l u d e d as a d j u n c t i v e t h e r a p i e s f o r 7 r e s e c t a b l e tumors (O'Connell, Gunderson & Fleming 1988). These t h e r a p i e s are used to reduce the r i s k of l o c a l r e c u r r e n t tumors and the d i s t a n t spread of malignancy e i t h e r due to lymphatic involvement or to malignant c e l l m i g r a t i o n from h a n d l i n g the primary tumor d u r i n g surgery. Treatment may occur e i t h e r pre-or p o s t o p e r a t i v e l y , and e n t a i l s s i g n i f i c a n t p h y s i c a l and p s y c h o l o g i c a l d i s c o m f o r t , thus adding to the e x i s t i n g problems r e l a t e d to s u r g e r y . Problem and Purpose of Study Problem The c r e a t i o n of a stoma f o r f e c a l d i v e r s i o n causes changes i n body image and/or l i f e s t y l e which may n e c e s s i t a t e changes i n coping s t r a t e g i e s , those c h a r a c t e r i s t i c p a t t e r n s developed by i n d i v i d u a l s to meet t h e i r needs. Nurses, i f they were aware of the p a t i e n t s ' p e r c e i v e d knowledge d e f i c i t s , c o u l d i n s t i t u t e t e a c h i n g programs t h a t would a s s i s t c l i e n t s to develop p o s i t i v e coping b e h a v i o r s . 8 Purpose The purpose of. t h i s study was to explore the l e a r n i n g needs and resource u t i l i z a t i o n of p a t i e n t s with a newly c r e a t e d permanent colostomy, from t h e i r p e r s p e c t i v e . T h i s study used a s e m i s t r u c t u r e d i n t e r v i e w conducted by the r e s e a r c h e r two weeks a f t e r the p a t i e n t ' s d i s c h a r g e . The o b j e c t i v e s of t h i s study were t o : 1 . Determine what p a t i e n t s found were the new knowledge and s k i l l s needed to cope with t h e i r new colostomy. 2. I d e n t i f y the resources they used to provide t h i s i n f o r m a t i o n . 3 . D i s c e r n whether the i n f o r m a t i o n provided was adequate i n kind and amount. 4. D i s c e r n whether the i n f o r m a t i o n provided was given a t an a p p r o p r i a t e time. 5. I d e n t i f y areas where l e a r n i n g needs were not met, and the p a t i e n t s ' p e r c e p t i o n of. what would have helped. 9 UBC Model for Nursing The UBC Model for Nursing views the individual as a behavioral system made up of nine subsystems. Each subsystem i s responsible for the s a t i s f a c t i o n of one basic human need (Campbell, 1987). These nine human needs formed the framework for categorizing the learning needs i d e n t i f i e d by study participants. The Model Identifies that each subsystem has an inner personal region representing the basic human need and the a b i l i t y , cognitive and executive, to meet the need. There is also a psychological environment which represents the need-related goals and forces which influence goal attainment. Forces influencing goal attainment are of three types, personal, s o c i o c u l t u r a l , and impersonal, and may influence coping behaviors in a negative or positive way. It is important to note that a positive force in one subsystem may become a negative force in another subsystem (Campbell, 1987, p. 9). The role of nursing as i d e n t i f i e d by the Model is to nurture individuals who are experiencing c r i t i c a l periods so that they may develop and use a range of coping behaviors that w i l l permit them to s a t i s f y 10 t h e i r b a s i c human needs, to achieve s t a b i l i t y and reach optimal h e a l t h (Campbell, 1987, p. 10). Th i s study w i l l focus on the te a c h i n g aspect of the n u r t u r i n g r o l e and i t s importance i n promoting or moni t o r i n g p o s i t i v e coping behavior f o r i n d i v i d u a l s . D e f i n i t i o n s 1. B a s i c Human Need: "A fundamental requirement for s u r v i v a l and growth of the b e h a v i o r a l system" (Campbell, 1987, p. 35). 2. C r i t i c a l P e r i o d : "A m a t u r a t i o n a l event or an u n p r e d i c t a b l e event In the l i f e c y c l e t h a t r e q u i r e s the development and use of s u i t a b l e coping behaviors to s a t i s f y b a s i c human needs, achieve s t a b i l i t y , and reach optimal h e a l t h " (Campbell, 1987, p. 35). The c r e a t i o n of a permanent colostomy may be co n s i d e r e d an u n p r e d i c t a b l e event, c o i n c i d e n t with which there may be m a t u r a t i o n a l events, e.g. r e t i r e m e n t , which r e q u i r e new, d i f f e r e n t , or a l t e r n a t i v e coping b e h a v i o r s . 3. S u i t a b l e Coping Behaviors: Are d e f i n e d as p u r p o s e f u l a c t i o n s , thoughts, f e e l i n g s , and p s y c h o l o g i c a l responses which reduce t e n s i o n and promote s a t i s f a c t i o n of b a s i c needs. 4. I n e f f e c t i v e coping behaviors are 11 i n a p p r o p r i a t e , and do not r e l i e v e t e n s i o n or s a t i s f y b a s i c human needs. 5. N u r t u r i n g (the r o l e of n u r s i n g ) : Is accomplished through f o s t e r i n g , p r o t e c t i n g , s u s t a i n i n g and t e a c h i n g (Campbell, 1987). 6. Enterostomal t h e r a p i s t : The enterostomal t h e r a p i s t i s a r e g i s t e r e d nurse with a post-graduate diploma i n care of the stoma p a t i e n t . Diploma programs are h o s p i t a l or community c o l l e g e based. Assumptions 1: C r e a t i o n of a colostomy i s an u n p r e d i c t a b l e l i f e event which n e c e s s i t a t e s the l e a r n i n g of new coping behaviors i n r e l a t i o n to p h y s i c a l , p s y c h o l o g i c a l , and s o c i a l needs. 2: Knowledge i s a way of a s s i s t i n g i n d i v i d u a l s to develop s u i t a b l e coping behaviors to respond to changes r e s u l t i n g from the c r e a t i o n of the colostomy. 3: A d u l t l e a r n e r s w i l l s e l f - d i a g n o s e l e a r n i n g needs. 12 L i m i t a t i o n s P a t i e n t s s e l f - d e f i n e d t h e i r l e a r n i n g needs and may have chosen to d i s r e g a r d components of stoma care t h a t are p s y c h o l o g i c a l l y or e s t h e t i c a l l y unacceptable to them (Jackson, 1976). P a t i e n t s who r e c e i v e d a formal education program may have p e r c e i v e d a l l i n f o r m a t i o n presented as important, r a t h e r than f o c u s s i n g on t h e i r own unique needs and a b i l i t y to cope with changes i n body image and l i f e s t y l e r e s u l t i n g from the colostomy. The sample p o p u l a t i o n was sma l l (8) and was r e c r u i t e d from two h o s p i t a l s . I d i o s y n c r a s i e s of care d e l i v e r y i n those i n s t i t u t i o n s may have had an impact on the response of the p a r t i c i p a n t s . The p a t i e n t s ' p e r c e p t i o n of adequacy of i n f o r m a t i o n r e g a r d i n g stoma care given while i n h o s p i t a l may have been impacted by t h e i r a b i l i t y to l e a r n . Problems such as s t r e s s r e l a t e d to a l t e r e d body image, low pain t o l e r a n c e , or c o m p l i c a t i o n s of su r g e r y may have rendered the s u b j e c t s incapable of i d e n t i f y i n g l e a r n i n g needs or l e a r n i n g s u i t a b l e coping b e h a v i o r s . Subjects were interv i e w e d eleven to twenty-one 13 days post d i s c h a r g e from the h o s p i t a l . T h i s time p e r i o d may, or may not, have provided them with s u f f i c i e n t time to i d e n t i f y t h e i r l e a r n i n g needs i n r e l a t i o n to t h e i r e v o l v i n g s e l f - c o n c e p t and l i f e s t y l e . Summary Th i s chapter introduced the framework which w i l l be used to i n t e r p r e t the l e a r n i n g needs of colostomy p a t i e n t s . In Chapter 2 the l i t e r a t u r e on e x i s t i n g p a t i e n t e d u c a t i o n programs, s p e c i f i c e ducation programs f o r colostomy p a t i e n t s , a framework f o r a d u l t l e a r n i n g , and the r e l a t i o n s h i p of the l i t e r a t u r e to a n u r s i n g model which i d e n t i f i e s the b e h a v i o r a l needs of a d u l t p a t i e n t s i s reviewed. Chapter 3 i n c l u d e s a d e s c r i p t i o n of the methodology used to implement the study. Chapter 4 presents the data from study p a r t i c i p a n t s . C o n c l u s i o n s from the data are presented i n Chapter 5. I m p l i c a t i o n s f o r n u r s i n g p r a c t i c e are drawn from these c o n c l u s i o n s , as are f u r t h e r r e s e a r c h q u e s t i o n s . 14 Chapter Two Review of Related L i t e r a t u r e The purpose of the l i t e r a t u r e review i s to p rovide a framework w i t h i n which to review the l e a r n i n g needs of colostomy p a t i e n t s . The i d e n t i f i e d areas f o r l i t e r a t u r e review i n c l u d e d : 1. E x i s t i n g p a t i e n t e d u c a t i o n programs and p e r c e p t i o n s of p a t i e n t s ' l e a r n i n g needs. 2. A t h e o r e t i c a l framework f o r c l i e n t / p a t i e n t needs assessment. 3. T h e o r i e s of a d u l t l e a r n i n g . P a t i e n t E d u c a t i o n Programs The o b j e c t i v e s of h e a l t h t e a c h i n g r e l a t e to r e i n f o r c e m e n t of p o s i t i v e b e h a v i o r s , changes i n negative b e h a v i o r s , or l e a r n i n g of new b e h a v i o r s . The m o t i v a t i o n f o r l e a r n i n g may be r e l a t e d to a change, or a p e r c e i v e d change, i n the h e a l t h s t a t u s of the p a t i e n t or an awareness of the impact of l i f e s t y l e . (Redman, 1984) Redman i d e n t i f i e d t h a t the g e n e r a l goal of h e a l t h 15 t e a c h i n g i s "to a s s i s t i n d i v i d u a l s to develop t h e i r optimal h e a l t h p o t e n t i a l " (Redman, 1984, p. 60), and r e l a t e d l e a r n i n g o b j e c t i v e s to be h a v i o r s : 1. C o g n i t i v e behaviors, which d e a l with i n t e l l e c t u a l a b i l i t i e s ; 2. A f f e c t i v e b ehaviors, which d e a l with f e e l i n g s , a t t i t u d e s and va l u e s ; and 3. Psychomotor be h a v i o r s , which d e a l with motor s k i l l s . Although there i s gen e r a l agreement t h a t p a t i e n t s should be i n v o l v e d i n the s e t t i n g of b e h a v i o r a l o b j e c t i v e s based on l e a r n i n g needs, a review of the l i t e r a t u r e has i d e n t i f i e d t h a t there i s i n c o n s i s t e n t a p p l i c a t i o n of t h i s p h i l o s o p h y i n p a t i e n t t e a c h i n g . (Areneth & Mamon, 1985; Casey & O'Connell, 1984; Cl a r k e , 1982; Fox, 1986; Hopp & H i l l s , 1985; Lauer, Murphy & Powers, 1982; McHatton, 1985; and Redman, 1984). Areneth and Mamon (1985), i n a study of 56 oncology p a t i e n t s , documented disagreement between nurses' and p a t i e n t s ' p e r c e p t i o n s of dis c h a r g e requirements. They concluded t h a t nursing's c o n t r i b u t i o n to dis c h a r g e p l a n n i n g i s hampered by the nurse's p e r s p e c t i v e . P a t i e n t s ' needs are i d e n t i f i e d as they r e l a t e to h o s p i t a l i z a t i o n , r a t h e r than to home 16 care . McHatton (1985) and Jackson (1976) i d e n t i f i e d t h a t the t i m i n g of i n f o r m a t i o n p r e s e n t a t i o n i s c r i t i c a l . To p r o v i d e i n f o r m a t i o n when a p a t i e n t i s not ready i s d i s t r e s s i n g to the p a t i e n t and was t e f u l of n u r s i n g time. McHatton d e s c r i b e d the stages of emotional adjustment to trauma based on stages proposed by Lee (1970). The four stages d e s c r i b e d by Lee are as f o l l o w s : 1. The Impact Stage, which i s c h a r a c t e r i z e d by f e e l i n g s of lack of c o n t r o l , d e s p a i r , and m o r t a l i t y . At t h i s p o i n t the i n d i v i d u a l l a c k s i n s i g h t , t h e r e f o r e l i t t l e or no l e a r n i n g can occur. A support r o l e i s a p p r o p r i a t e f o r the nurse. The p a t i e n t ' s fear i s gr e a t e r than the need to know. 2. The Retr e a t Stage, which may f o l l o w p h y s i o l o g i c a l s t a b i l i t y , i s where d e n i a l of the occurrence i s a f a m i l i a r p a t i e n t response. Mourning of a l o s s of body image may occur. Anger towards, and r e j e c t i o n o f , care given and f a m i l y are common beh a v i o r s . C o n f l i c t may occur between the goals of nu r s i n g , which are to make the person independent, and d e n i a l of the occurrence by both the p a t i e n t and the f a m i l y , f o l l o w e d by t h e i r r e j e c t i o n of treatment g o a l s . Lee r e i n f o r c e s the need to keep communication 17 open by accepting behavior, but not reinfo r c i n g i t . 3. The Acknowledgment Stage, in which there is a lack of self-esteem and self-confidence, and fear of abandonment by friends, family, and society in general. It is the stage where the patient s t a r t s to perceive a need to know information. There i s a need to move toward mastery, and to progress. The role of the nurse i s to become aware of the individual's interests and future plans, in order to a s s i s t r e a l i s t i c a l l y with the attainment of these goals. 4. The Reconstruction Stage, during which the patient s t a r t s to look to the future, but i s vulnerable and sensitive to f a i l u r e . Lee i d e n t i f i e s three areas where mastery needs to occur to integrate f u l l y the reconstruction stage: "(a) reintegration of the person's altered body image, (b) reorganization of s o c i a l values, (c) adjustment to technical devices or procedures" (p. 586). Lee suggests that in t h i s stage, regressive tendencies to return to any or a l l of the preceding phases may occur as a res u l t of f a i l u r e to master. Information needs to be presented in a nonthreatening way, and opportunities for success must be i d e n t i f i e d and reinforced. Fox (1986) integrated requirements for timing i d e n t i f i e d by McHatton with an andragogical approach t o p a t i e n t - i d e n t i f i e d n e e d s f o r l e a r n i n g , a nd s t a t e d t h a t b y f i n d i n g o u t what t h e p a t i e n t w a n t s t o know, t h e c r e d i b i l i t y o f a t e a c h e r i n c r e a s e s , a s d o e s t h e v a l u e p l a c e d on t h e i n f o r m a t i o n p r o v i d e d . D i s c r e p a n c i e s b e t w e e n p a t i e n t - and n u r s e - i d e n t i f i e d l e a r n i n g n e e d s a r e d e s c r i b e d i n s t u d i e s by C l a r k e ( 1 9 8 2) o f n o n u r g e n t e m e r g e n c y d e p a r t m e n t p a t i e n t s , C a s e y and O ' C o n n e l l ( 1 9 8 4 ) and K a r l i k a n d Y a r c h e s k i ( 1 9 8 7) o f p a t i e n t s w i t h m y o c a r d i a l i n f a r c t i o n s , and L a u e r e t a l (1982) o f c a n c e r p a t i e n t s . P a t i e n t s i n t h e s e s t u d i e s i d e n t i f i e d t h a t t h e i r g r e a t e s t l e a r n i n g n e e d s r e l a t e d t o d i a g n o s i s , s e l f - p r e s e r v a t i o n , k n o w l e d g e a b o u t r i s k f a c t o r s , s i t u a t i o n a l c o n t r o l , a nd r e l i e f o f p a i n , w h e r e a s n u r s e s i d e n t i f i e d m e d i c a t i o n and d e a l i n g w i t h f e e l i n g s a s t h e most i m p o r t a n t a r e a s f o r p a t i e n t e d u c a t i o n . I n t h e s t u d y o f e m e r g e n c y p a t i e n t s , n u r s e s i d e n t i f i e d p r e v e n t i o n s t r a t e g i e s a s h i g h e s t , w h e r e a s p a t i e n t s i d e n t i f i e d c o n c e r n s o v e r r e c o v e r y r a t e , e x p l a n a t i o n o f s i g n s and symptoms, and p o s s i b l e c o m p l i c a t i o n s . P a t i e n t s i n s t u d i e s done by K a r l i k and Y a r c h e s k i ( 1 9 8 7 ) , C l a r k e ( 1 9 8 2 ) , and C a s e y and O ' C o n n e l l ( 1 9 8 4 ) , i d e n t i f i e d p h y s i c i a n s a s t h e p r e f e r r e d s o u r c e o f 19 information to s a t i s f y learning needs related to prognosis and prevention of disease. This has major implications for nursing, since patient education is considered an important role of the professional nurse (Megenity, 1982; Redman, 1984; Roberts, 1978). Karlik and Yarcheski (1987) i d e n t i f i e d a further research question regarding "Who, the physician or nurse, is more e f f e c t i v e in patient teaching, and whose teaching the patient is more apt to comply with" (p. 550). An extension of that research question could i d e n t i f y i f the effectiveness of teaching is driven by the information content as well as the professional doing the teaching. A m u l t i d i s c i p l i n a r y task force from the National Veterans* Administration was assigned the task of developing an assessment format which would f a c i l i t a t e i d e n t i f i c a t i o n of patients' learning needs (Kisner Berg, Eckhoff-Biagi, Hebert, Rodell, and Sprafkin, 1987). Issues that were considered by the task force were prior exclusion of the patient as an active participant in determining education needs, goals and p r i o r i t i e s , and health care s t a f f ' s unawareness of the need and/or unwillingness to assess multi-causal factors which motivate patients to comply with the medical regimen. 20 The g e n e r a l guide developed by the task f o r c e c o n s i s t e d of two s e c t i o n s , a common content area, which i n c l u d e d s i g n s , symptoms, medications, and self-management s k i l l s , and a s e c t i o n based on Becker's Health B e l i e f Model, i d e n t i f y i n g f i v e components which impact on how people w i l l behave i n r e l a t i o n to t h e i r h e a l t h . These are s u s c e p t i b i l i t y to i l l n e s s , the p e r c e i v e d s e v e r i t y of i l l n e s s , p e r c e i v e d b e n e f i t s of t a k i n g a c t i o n , b a r r i e r s to a c t i o n , and cues to a c t i o n . The i m p l i c a t i o n i s t h a t assessment of the person's p e r c e p t i o n s of t h e i r c o n d i t i o n i s necessary p r i o r to e f f e c t i v e p l a n n i n g f o r education (Kisner Berg et a l , 1987, p. 201). The guide c o n s t r u c t i s not i d e n t i c a l t o , but does i n c o r p o r a t e , the stages of emotional adjustment to trauma as i d e n t i f i e d by Lee and Fox. Hopp and H i l l s (1985) a l s o r e f e r r e d to Becker's Health B e l i e f Model, and extended the model to i n c l u d e t h e o r i e s of "Locus of c o n t r o l " . Those who are e x t e r n a l s b e l i e v e t h a t they are c o n t r o l l e d by o u t s i d e f o r c e s , e.g. f a t e , or powerful o t h e r s , whereas i n t e r n a l s b e l i e v e t h a t they p e r s o n a l l y are i n c o n t r o l of t h e i r own l i v e s , and are r e s p o n s i b l e f o r what happens to them. The concept, used i n r e l a t i o n to p a t i e n t - i d e n t i f i e d l e a r n i n g needs, adds another 2 1 dimension to assessment and impacts on how i n f o r m a t i o n i s g i v e n , and by whom. Studies S p e c i f i c a l l y I d e n t i f y i n g the Learning Needs of  Colostomy P a t i e n t s Few r e s e a r c h s t u d i e s were found which d e a l t with the l e a r n i n g needs of ostomy p a t i e n t s . None d e a l t s p e c i f i c a l l y with the l e a r n i n g needs of p a t i e n t s with permanent colostomies d u r i n g t h e i r i n i t i a l r e h a b i l i t a t i o n phase. Studies found used a q u e s t i o n n a i r e to s o l i c i t p a t i e n t input, and were conducted on average 5 to 1 0 years post surgery. A review of these s t u d i e s and a r t i c l e s w r i t t e n by p h y s i c i a n s and nurses, based on t h e i r p e r s o n a l p r a c t i c e , i s presented. A r t i c l e s , based on t h e i r p e r s o n a l p r a c t i c e , by Doering ( 1 9 8 4 ) and Thielman ( 1 9 8 3 ) presented a t a s k - o r i e n t e d approach to p a t i e n t t e a c h i n g i n c l u d i n g stoma and s k i n care, d i e t , c o n t r o l of c o n s t i p a t i o n , d i a r r h e a , gas and odors, and where to purchase stoma s u p p l i e s . Other authors ( B a i l e y , 1 9 7 7 ; Cole & P e r r e a u l t , 1 9 8 5 ; D i e t z , 1 9 8 0 ; Druss, O'Connor & S t e r n , 1 9 6 8 & 1 9 6 9 ; F o l l i c k , Smith & Turk, 1 9 8 4 ; Jackson, 1 9 7 6 ; J e t e r , 1979; K e l t i k a n g a s - J a r v i n e n , Loven & M o l l e r , 1984; M i t c h e l l , 1980; Watson, 1983 & 1985) i d e n t i f i e d the Importance of d e a l i n g with p s y c h o s o c i a l concerns as w e l l as the p h y s i c a l care a s s o c i a t e d with c r e a t i o n of the colostomy. Documentation by Druss et a l , F o l l i c k et a l , Jackson, K e l t i k a n g a s - J a r v i n e n et a l , M i t c h e l l , and Watson was research-based, and t h a t of B a i l e y , Cole and P e r r e a u l t , D i e t z , and J e t e r was experience-based. These s t u d i e s and a r t i c l e s d i d emphasize the importance of c o n s u l t a t i o n with the p a t i e n t . Druss et a l , F o l l i c k et a l , Jackson, and K e l t i k a n g a s - J a r v i n e n et a l , used input obtained from p a t i e n t q u e s t i o n n a i r e s as w e l l as t h e i r p e r s o n a l p r a c t i c e to i d e n t i f y needs of the ostomy p a t i e n t . B a i l e y (1977) reviewed p a t i e n t education i n f o r m a t i o n a v a i l a b l e at t h a t time. Major content areas found were s e l e c t i o n of a p p r o p r i a t e a p p l i a n c e s , d e a l i n g with s k i n i r r i t a t i o n , i r r i g a t i o n of the colostomy, and s e l e c t i o n of foods. Although B a i l e y i d e n t i f i e d the p o t e n t i a l f o r p s y c h o l o g i c a l and s o c i a l problems, and i d e n t i f i e d t h a t n u r s i n g shared i n the r e s p o n s i b i l i t y of a s s i s t i n g the p a t i e n t to a d j u s t to change, the major focus was on p h y s i o l o g i c a l changes. Druss et a l (1968) and Prudden (1971) i n d i c a t e d t h a t f o r the m a j o r i t y of p a t i e n t s undergoing colostomy s u r g e r y f o r cancer of the bowel, knowledge of t h e i r d i a g n o s i s and prognosis was the primary need and, i n t h e i r experience, care r e l a t e d to the colostomy was secondary. They recommended ongoing support from the surgeon. The study conducted by Druss et a l c o n s i s t e d of 36 p a t i e n t s who had undergone abdominoperineal r e s e c t i o n f o r cancer of the l a r g e i n t e s t i n e . P a t i e n t s i n c l u d e d i n the study were three to ten years p o s t o p e r a t i v e . They addressed the p e r i o d of r e h a b i l i t a t i o n , and b e l i e v e d i t may take the f i r s t year f o r p a t i e n t s to l e a r n new coping s t r a t e g i e s to d e a l with s o c i a l , emotional and p h y s i c a l changes r e l a t i n g to t h e i r colostomy. P a t i e n t s i n the study viewed t h i s f i r s t year as a p e r i o d of adjustment and e x p e r i m e n t a t i o n . Cole and P e r r e a u l t (1985) documented i s s u e s i d e n t i f i e d by colostomy p a t i e n t s s i x months p o s t d i s c h a r g e . These p a t i e n t s were seen i n the o u t p a t i e n t department of a Veterans' A d m i n i s t r a t i o n Medical Center. Issues unresolved at t h i s time i n c l u d e d s o c i a l , emotional and v o c a t i o n a l concerns. P a t i e n t s r e p o r t e d t h a t s o c i a l and emotional concerns were so overwhelming t h a t the p o s t o p e r a t i v e l e a r n i n g of t e c h n i c a l s k i l l s was d i f f i c u l t . P. G. Watson (1983), i n a study of 31 s u b j e c t s 24 who underwent ostomy su r g e r y f o r c o l o r e c t a l or bladder cancer, i d e n t i f i e d a p o s i t i v e response to c o u n s e l l i n g i n t e r v e n t i o n In the p o s t o p e r a t i v e p e r i o d d u r i n g h o s p i t a l i z a t i o n . The focus of the study was the impact of the ostomy su r g e r y on the person's s e l f - c o n c e p t . The r e s u l t s of the study supported the n o t i o n t h a t those who r e c e i v e c o u n s e l l i n g were able to i n t e g r a t e o r g a n i z a t i o n of the cancer/ostomy experience i n t o the s e l f - c o n c e p t i n a p o s i t i v e way. Issues t h a t were addressed were mastery over the ostomy, e a r l y i n the p o s t o p e r a t i v e p e r i o d so t h a t i t d i d not become a c o n t r o l l i n g f a c t o r i n everyday l i f e , abdominal d i s f i g u r e m e n t , probable sexual d y s f u n c t i o n , and cancer. P. G. Watson (1985) proposed a model whereby the needs of ostomy p a t i e n t s ( i n f o r m a t i o n a l needs, t e c h n i c a l ostomy-management needs, and emotional support needs) were superimposed on fundamental p s y c h o s o c i o l o g i c a l needs. Watson's paper supported the use of r e s e a r c h to c o n f i r m the p a t i e n t i n f o r m a t i o n needs i d e n t i f i e d by the model. M i t c h e l l (1980), u s i n g data from q u e s t i o n n a i r e s completed by 3 1 7 ostomates (ileostomy, colostomy, and urostomy) f i v e years p o s t s u r g e r y , i d e n t i f i e d t h a t ostomates b e l i e v e d that there was i n s u f f i c i e n t 25 i n f o r m a t i o n given i n h o s p i t a l r e l a t i n g to l i v i n g with an ostomy, and i n s u f f i c i e n t a s s i s t a n c e provided to them once they were d i s c h a r g e d home. The major source of a s s i s t a n c e provided p o s t d i s c h a r g e was from the p a t i e n t s ' g e n e r a l p r a c t i t i o n e r s or the a p p l i a n c e maker's r e p r e s e n t a t i v e . Jackson (1976) s t u d i e d a group of s i x p a t i e n t s having colostomy surgery, and suggested t h a t s i n c e the p e r i o d between d i a g n o s i s and surgery i s l i m i t e d --approximately one month between the i n d i v i d u a l becoming i l l and having s u r g e r y -- i t i s an extreme t e s t of coping r e s o u r c e s . Jackson i d e n t i f i e d t h i s p e r i o d , between d i a g n o s i s and d i s c h a r g e from h o s p i t a l f o l l o w i n g surgery, as a c r i s i s s i t u a t i o n where there i s a t h r e a t to p h y s i c a l or f a m i l y i n t e g r i t y , r a d i c a l change to the s o c i a l r o l e and to l i f e g o a l s , and the u t i l i z a t i o n of customary methods of problem s o l v i n g may be inadequate or i n a p p r o p r i a t e . Research by F o l l i c k et a l (1984) i d e n t i f i e d problems i n p s y c h o s o c i a l adjustment of 131 ostomates (ileostomy, colostomy and urostomy) r e p o r t e d through p a t i e n t q u e s t i o n n a i r e s , and examined t h e i r i n t e r r e l a t i o n s h i p with b i o l o g i c a l and s o c i a l components. The r e s u l t s of t h i s study suggest t h a t adequacy of p r e p a r a t o r y i n f o r m a t i o n , and i t s e f f e c t on p o s t s u r g i c a l adjustment, i s an important component i n i n t e r v e n t i o n s to enhance p a t i e n t coping. I t i s suggested by Hopp and H i l l s (1985) t h a t e x t e r n a l s respond b e t t e r to Information g i v e n by a powerful other, e.g. a p h y s i c i a n , whereas f o r i n t e r n a l s i n f o r m a t i o n o f f e r e d by any h e a l t h care p r o f e s s i o n a l i s e v a l u a t e d i n the l i g h t of i t s meaning f o r t h e i r l i f e s i t u a t i o n . J e t e r (1979) proposed a r e h a b i l i t a t i o n model i n which the h e a l t h care team a c t s i n the r o l e of f r i e n d , r a t h e r than as s t r i c t l y p r o f e s s i o n a l s . The emphasis i n the r e l a t i o n s h i p i s to e s t a b l i s h a plan of s e l f c a r e . J e t e r c i t e d a high c o r r e l a t i o n between what p a t i e n t s are able to do f o r themselves and t h e i r emotional recovery, and recommended t h a t the p a t i e n t s meet with a recovered ostomate as a motivator to promote autonomy and involvement of the p a t i e n t s i n t h e i r care and t h e i r r e t u r n to a normal l i f e s t y l e . A d u l t L e a r n i n g S t u d i e s i n the area of h e a l t h care conducted by Anderson, (1986); Casey and O'Connell, (1984); C l a r k e (1982); Fox (1986); Hopp and H i l l s , (1985); McHatton (1985); and Waters, (1987), have i d e n t i f i e d the 27 requirements f o r p a t i e n t s to be i n v o l v e d i n the i d e n t i f i c a t i o n of t h e i r l e a r n i n g needs. These f i n d i n g s are c o n s i s t e n t with the s i g n i f i c a n t change i n t h i n k i n g concerning a d u l t l e a r n i n g which occurred i n the mid-60's. Teaching t h e o r i e s began d i r e c t i n g a change from a pedagogical method (teacher d i r e c t e d ) to an a n d r a g o g i c a l method ( l e a r n e r d i r e c t e d ) (Knowles, 1973) . The pedagogical model i s c h a r a c t e r i z e d by the f o l l o w i n g assumptions (Knowles, 1984): 1. The l e a r n e r i s a dependent p e r s o n a l i t y , and the teacher takes f u l l r e s p o n s i b i l i t y f o r making a l l d e c i s i o n s about what and how i n f o r m a t i o n should be l e a r n e d . 2. The previous experience of the l e a r n e r i s of l i t t l e value as a resource f o r l e a r n i n g . 3. Readiness to l e a r n i s a f u n c t i o n of age. Students are t o l d what i s important f o r them to l e a r n . 4. Subject content d r i v e s the c u r r i c u l u m , and students l e a r n p r o g r e s s i v e l y more complex m a t e r i a l , based on placement of the s u b j e c t , not the s t u d e n t s ' i n t e r e s t i n the s u b j e c t . 5. M o t i v a t i o n to l e a r n i s from e x t e r n a l p r e s s u r e s which may i n c l u d e consequence of f a i l u r e , peer pr e s s u r e , or c o m p e t i t i o n to succeed. 28 The Andragogical Model proposed by Knowles was based on the psychological d e f i n i t i o n of man: "We become adult psychologically when we arrive at a s e l f concept of being responsible for our own l i v e s , of being s e l f - d i r e c t e d " (Knowles,, 1984, p.55). Knowles was influenced by the work of Carl Rogers. Rogers (1951) began to look at p r i n c i p l e s that he applied to counselling c l i e n t s , and to assign these same pr i n c i p l e s to adult education. P r i n c i p l e s applied by Rogers to the education f i e l d are as follows: 1. The teacher f a c i l i t a t e s the learning of the student by finding out what the student hopes to learn from the course. 2. Real learning is enhanced when the person sees relevance in the information for attaining personal goals. 3. Learning, p a r t i c u l a r l y i f i t i s s i g n i f i c a n t , is often a threatening thing, and may relate to a value with which s e l f has become i d e n t i f i e d . The e f f e c t i v e teacher provides a s i t u a t i o n where the threat to the learner i s reduced to the minimum. When r e a l i t y provides the threat, the learning of behaviors that maintain the s e l f is enhanced (Rogers, 1951). The basic assumption is that the individual is able to handle his own l i f e s i t u a t i o n in constructive ways. 29 T h i s i n c l u d e s i d e n t i f y i n g problems, having a r e a l i s t i c view of s e l f , and adapting to new s i t u a t i o n s and informat i o n . Knowles acknowledged the c o n t r i b u t i o n s to a d u l t l e a r n i n g theory made by Rogers, and recognized the s p e c i a l r o l e t h a t s a f e t y , as i d e n t i f i e d by Maslow, plays i n the process of pe r s o n a l growth that f o l l o w s l e a r n i n g (Knowles, 1984). Knowles accommodated i n h i s concept of t e a c h i n g the n u r t u r i n g elements of both Rogers' and Maslow's t h e o r i e s , which i n c l u d e the teacher as f a c i l i t a t o r , the c r e a t i o n of a nonthreatening environment, and the r e c o g n i t i o n t h a t the i n d i v i d u a l has the a b i l i t y to develop h i m s e l f on h i s own terms. The assumptions inherent i n Knowles' Andragogical Model are as f o l l o w s : 1 . The a d u l t l e a r n e r i s s e l f - d i r e c t e d , and takes r e s p o n s i b i l i t y f o r s e l f . 2. The l e a r n e r ' s experience i s valued, and becomes the source of the a d u l t ' s s e l f - i d e n t i t y . 3. A d u l t s become ready to l e a r n when they experience a need to know or do something which may be r e l a t e d t o a developmental task or an u n a n t i c i p a t e d change i n some aspect of t h e i r l i v e s . 4. A d u l t s are motivated to l e a r n a f t e r they 30 experience or i d e n t i f y a need i n t h e i r l i f e s i t u a t i o n . A c o n n e c t i o n i s made between the i n f o r m a t i o n and i t s relevance to t h e i r i d e n t i f i e d need. 5. A d u l t s are motivated by i n t e r n a l ( s e l f - e s t e e m , r e c o g n i t i o n , s e l f - a c t u a l i z a t i o n ) , r a t h e r than e x t e r n a l f o r c e s (Knowles, 1984). Brundage (1980) u t i l i z e d s i m i l a r p r i n c i p l e s of a d u l t l e a r n i n g to develop a comprehensive program pl a n n i n g guide f o r the M i n i s t r y of Education i n O n t a r i o . An issue i d e n t i f i e d by Brundage, and not i d e n t i f i e d i n other l i t e r a t u r e i s t h a t although a d u l t s ' attendance at l e a r n i n g programs Is v o l u n t a r y , i n d i v i d u a l s may f e e l t h a t e x t e r n a l c o n d i t i o n s over which they have no c o n t r o l are f o r c i n g them to a t t e n d a l e a r n i n g program a g a i n s t t h e i r wishes. In t h i s i n s t a n c e , a d u l t s a c t l i k e i n v o l u n t a r y l e a r n e r s , and may e x h i b i t behaviors such as lack of m o t i v a t i o n or d i s r u p t i v e behavior. T h i s i s s u e of lack of c o n t r o l has i m p l i c a t i o n s f o r t e a c h i n g programs i n h e a l t h c a r e . As i d e n t i f i e d e a r l i e r , p a t i e n t s who are e x t e r n a l i n t h e i r l o c u s of c o n t r o l b e l i e v e t h a t the " i l l n e s s event" Is o u t s i d e of t h e i r c o n t r o l , and may have l i t t l e m o t i v a t i o n to l e a r n i n f o r m a t i o n that w i l l a l l o w them to assume c o n t r o l over the i l l n e s s or to cope with changing l i f e 31 circumstances r e s u l t i n g from the i l l n e s s (Hopp & H i l l s , 1985). Brundage d e s c r i b e d m o t i v a t i o n f o r l e a r n i n g as e i t h e r the d r i v e f o r r e d u c i n g of unmet needs or the d r i v e f o r p o s i t i v e growth. Approaches to the a d u l t l e a r n e r may d i f f e r , depending on the m o t i v a t i o n . Those motivated by unmet needs may r e q u i r e more emphasis on meeting s a f e t y needs and r e d u c t i o n of t h r e a t , p r i o r to a c t i v e l e a r n i n g . A d u l t l e a r n i n g theory i s p a r t i c u l a r l y a p p l i c a b l e to h e a l t h care s i t u a t i o n s s i n c e p a t i e n t s are f r e q u e n t l y faced with s i t u a t i o n s where the need to have i n f o r m a t i o n , and to use t h a t i n f o r m a t i o n i n the immediate f u t u r e , i s germane to t h e i r s u r v i v a l . Fox (1986), i n a comparison of the pedagogical and a n d r a g o g i c a l t e a c h i n g s t y l e s (Appendix I I ) , i d e n t i f i e d problems i n the approach which n u r s i n g has u t i l i z e d towards p a t i e n t education, and suggested t h a t the nurse's own l e a r n i n g experience may impact on the way i n which the nurse views the i n d i v i d u a l , and the value placed by the nurse on i n f o r m a t i o n presented. Ammon-Gaberson (1987) used p r i n c i p l e s of a d u l t l e a r n i n g to teach nurses i n an o p e r a t i n g room s e t t i n g , and r e i n f o r c e d t h a t the most enduring r o l e models l i k e l y come from c h i l d h o o d s c h o o l experiences, and the 32 pedagogical model throws up b a r r i e r s to l e a r n i n g i n the a d u l t . Ammon-Gaberson recommended t h a t the f o l l o w i n g p r i n c i p l e s be r e i n f o r c e d to minimize the e f f e c t of e a r l i e r l e a r n i n g experiences of the h e a l t h care p r o f e s s i o n a l . The teacher should f a c i l i t a t e l e a r n i n g through r e d u c i n g o b s t a c l e s to l e a r n i n g by: 1. P r o v i d i n g an environment t h a t doesn't t h r e a t e n the l e a r n e r ' s s e l f - c o n c e p t and s e l f - e s t e e m . 2. A l l o w i n g a d u l t s to t h i n k of themselves as a c h i e v e r s and b u i l d i n g on e x p e r i e n c e . The a d u l t l e a r n e r should be encouraged to be r e s p o n s i b l e f o r p l a n n i n g , implementing, and e v a l u a t i n g the l e a r n i n g t h a t i s o c c u r r i n g . 3. A l l o w i n g f o r the p r a c t i c e of new s k i l l s , and e n s u r i n g t h a t feedback i s immediate, d e s c r i p t i v e , and nonjudgemental. 4. R e i n f o r c i n g s u c c e s s f u l l e a r n i n g . Thus by p r o v i d i n g a more p o s i t i v e l e a r n i n g experience f o r nurses, they may be i n f l u e n c e d i n t h e i r own t e a c h i n g s t y l e . A T h e o r e t i c a l Framework f o r P a t i e n t Needs Assessment L i t e r a t u r e reviewed to t h i s p o i n t has i d e n t i f i e d 33 theory r e l a t i n g to a d u l t l e a r n i n g , and has i d e n t i f i e d i n c o n s i s t e n c i e s present i n e x i s t i n g p a t i e n t education programs as they r e l a t e to p a t i e n t s ' p e r c e p t i o n s of l e a r n i n g needs and nurses' p e r c e p t i o n s of l e a r n i n g needs . Nursing i d e n t i f i e s p a t i e n t / c l i e n t t e a c h i n g as an independent f u n c t i o n of n u r s i n g , although s e v e r a l s t u d i e s ( K a r l i k & Y a r c h e s k i , 1987; C l a r k e , 1982; Casey & O'Connell, 1984) i n d i c a t e a preference by p a t i e n t s to have i n f o r m a t i o n given by p h y s i c i a n s . The n u r t u r i n g aspect of t e a c h i n g was addressed by Ammon-Gaberson, 1987; Brundage, 1980; Knowles, 1973 and 1984; and Rogers, 1951. There i s a g e n e r a l agreement amongst authors t h a t the f a c i l i t a t i v e r o l e of the teacher i n h e a l t h e d u c a t i o n r e q u i r e s knowledge of the p a t i e n t ' s past experience, p e r c e i v e d t h r e a t s to s a f e t y , and areas of s t r e n g t h and weakness i n order to a s s i s t with the development of coping s t r a t e g i e s . Only one a r t i c l e was found which i d e n t i f i e d a s p e c i f i c n u r s i n g model as g i v i n g d i r e c t i o n f o r n u r s i n g p r a c t i c e i n the area of h e a l t h e d u c a t i o n . Bromley (1980, p. 246) u t i l i z e d Orem's s e l f - c a r e model and i d e n t i f i e d t h a t the major goal of n u r s i n g i s to a s s i s t p a t i e n t s i n l e a r n i n g what they need to know i n order to do s e l f - c a r e as d i c t a t e d by the anatomical 34 m o d i f i c a t i o n ( c r e a t i o n of a stoma). A number of authors (Cole & Perreault, 1985; Dietz, 1980; F o l l i c k et a l , 1984; Jeter, 1979; and Roberts, 1978) i d e n t i f i e d coping strategies and use of adaptive behaviors, but did not present them in the context of a nursing model. The UBC Nursing Model (Campbell, 1987) was chosen as the framework to assess study patients. in the UBC Nursing Model the individual is i d e n t i f i e d as a behavioral system, and nursing's role is to nurture the behavioral system. This behavioral system is made up of nine subsystems, each of which is responsible for the s a t i s f a c t i o n of a basic human need (Appendix I I I ) . The UBC model accommodates the nurturing aspects of the teaching r o l e . Nursing's unique function is to nurture individuals experiencing c r i t i c a l periods in the l i f e cycle so they may develop and use coping behaviors which permit them to s a t i s f y their basic human needs (Campbell, 1987, p.6). The nurturing role of nursing is enacted by fostering, protecting, sustaining, and teaching. It is the function of teaching that w i l l receive the major attention in thi s study. Interventions used by nursing to enhance the patient's coping behaviors include reducing negative 35 f o r c e s , m a i n t a i n i n g and s t r e n g t h e n i n g p o s i t i v e f o r c e s , and f o s t e r i n g the development of c o g n i t i v e and ex e c u t i v e a b i l i t i e s . To review how the UBC Nursing Model w i l l be u t i l i z e d i n r e l a t i o n to the study p a t i e n t s , outcome standards prepared by the I n t e r n a t i o n a l A s s o c i a t i o n of Enterostomal T h e r a p i s t s (IAET) are presented and r e l a t e d to the b a s i c human needs of the b e h a v i o r a l systems i d e n t i f i e d i n the UBC Nursing Model. The IAET standards a r e : 1. C l i e n t s understand the d i a g n o s i s , prognosis and planned i n t e r v e n t i o n s , and possess knowledge r e l a t e d to t h e r a p i e s and stoma f u n c t i o n i n g to enable them to p a r t i c i p a t e f u l l y i n the plan of c a r e . 2. The c l i e n t achieves optimal p h y s i c a l s t a t u s a p p r o p r i a t e f o r the immediate p o s t o p e r a t i v e p e r i o d , and e x h i b i t s adaptive coping behavior. 3. The c l i e n t possesses s u f f i c i e n t knowledge to assume s e l f - c a r e and f o r the p r e v e n t i o n , d e t e c t i o n and management of p o t e n t i a l problems r e l a t e d to a l t e r e d body f u n c t i o n or image. 4. The c l i e n t achieves optimal p h y s i c a l s t a t u s based on a c q u i r e d knowledge and p r a c t i c a l a p p l i c a t i o n of l e a r n e d s k i l l s , e n a b l i n g a resumption of p r i o r a c t i v i t i e s . 36 5. The c l i e n t understands the anatomy and p h y s i o l o g y of the d i g e s t i v e system, r e c o g n i z e s the d i e t a r y r e s t r i c t i o n s s p e c i f i c to the ostomy, and possesses knowledge to maintain optimal n u t r i t i o n a l and p h y s i c a l s t a t u s . 6. The c l i e n t understands and manages medications i n a knowledgeable and r e s p o n s i b l e manner. 7. The c l i e n t a t t a i n s an ac c e p t a b l e body image f o l l o w i n g ostomy surgery. 8. The c l i e n t understands the r e l a t i o n s h i p between the p h y s i o l o g i c a l and p s y c h o l o g i c a l aspects of s e x u a l i t y , and possesses knowledge to be able to p a r t i c i p a t e i n sexual a c t i v i t i e s commensurate with p r e - o p e r a t i v e or d e s i r e d l e v e l s (Bordon et a l , 1983). The outcome standards of the IAET provide a frame of r e f e r e n c e f o r p a t i e n t l e a r n i n g needs, and the UBC Nursing Model provides a framework of b e h a v i o r a l needs common to a l l p a t i e n t s . Based on the assumption t h a t a d u l t s w i l l i d e n t i f y what they need to know and w i l l arrange t h a t l e a r n i n g around l i f e ' s problems (Knowles, 1973), t h i s study examined what p a t i e n t s with a permanent colostomy p e r c e i v e d they needed to know and when, and f u r t h e r , how t h a t i n f o r m a t i o n was obtained, i f a t a l l . 37 Table I shows the c o r r e l a t i o n between the UBC Nursing Model and the IAET Standards (Bordon et a l , 1983 ) . Table I C o r r e l a t i o n between the UBC Nursing Model and the IAET  Standards UBC NURSING MODEL 9 B a s i c Human Needs RELATED IAET STANDARD A c h i e v i n g : The need f o r mastery. A l l A f f e c t i v e : The need f o r l o v e , 4, 7, 8 belongingness, and dependence. E g o - v a l u a t i v e : The need f o r 4, 7 re s p e c t of s e l f by s e l f and o t h e r s . E x c r e t o r y : The need f o r c o l l e c t i o n 5 and removal of accumulated wastes. I n g e s t i v e : The need f o r intake of 5 food and f l u i d ; f o r nourishment. P r o t e c t i v e : The need f o r s a f e t y and s e c u r i t y . R e p a r a t i v e : The need f o r balance between p r o d u c t i o n and u t i l i z a t i o n of energy. R e s p i r a t o r y : The need f o r intake of oxygen. 2, 3, 4, 5, 6 2, 4, 5 None S a t i a t i v e : The need f o r s t i m u l a t i o n 3, 7, 8 of the system's senses. 38 Chapter Three Methodology Research Design A descriptive research design that involved one interview two weeks after discharge with a convenience sample of patients with a newly created permanent colostomy was used to obtain perceptions of the i r learning needs and to determine resource u t i l i z a t i o n . Selection of Participants I n i t i a l l y , information was to be gathered during a four-month period using patients discharged from one hos p i t a l . Unfortunately, due to the i l l n e s s of the surgeon who did the s p e c i f i c procedure, an additional source of patients had to be found. A delay of several months occurred while permission to conduct research in another hospital was sought. A further complication, which reduced the number of patients available to the researcher, was the development of an Improved s u r g i c a l procedure in 1 9 8 6 - 8 7 , and i t s introduction to use in late 1987 , which reduced the 39 number of permanent colostomies required for resection of malignant r e c t a l tumors. Surgical techniques to minimize the requirement for a permanent colostomy have evolved with the introduction of s u r g i c a l staples in North America by Ravitch and Steichen. The use of a c i r c u l a r stapler has extended the l i m i t s of low anterior resection further than was t e c h n i c a l l y possible with the hand-sutured anastomosis (Gordon & Dalrymple, 1987). Not only has the stapler minimized the requirement for a permanent colostomy by allowing resection of lower r e c t a l carcinomas, but i t has also minimized the s u r g i c a l s k i l l required for s u r g i c a l bowel anastomosis, allowing the surgeon to concentrate more f u l l y on resection of the tumor (Heald & Chir, 1987). The procedure, which uses the EEA (end-to-end anastomosis) s u r g i c a l stapling device, allows for an anastomosis that is as secure as a hand-sewn anastomosis, but at a much lower l e v e l in the r e c t a l area than was t e c h n i c a l l y possible with a hand-sewn anastomosis. This procedure has just recently been introduced in the Vancouver area (personal communication with the primary surgeon). Colorectal cancer remains a leading cause of death in both Canada and the United States: 140,000 new cases were diagnosed in the United States in 1986, and 40 there were 60,000 deaths (Doughty, 1986). Surgical excision of the malignant tumor remains the treatment of choice, and a s i g n i f i c a n t number of individuals w i l l be l e f t with a permanent colostomy. Of those patients undergoing a resection, the five-year s u r v i v a l rate i s 45% (Doughty, 1986). When the study proposal was I n i t i a l l y developed in early 1987, the projected number of patients per year requiring permanent colostomy, based on the previous year's s t a t i s t i c s from the i n i t i a l h ospital, was 50, making a study of 8 not u n r e a l i s t i c . Study patients were selected from those meeting the following c r i t e r i a : 1. Between the ages of 25 to 70 2. Having a newly created permanent colostomy. 3. Having no physical or mental handicap which would prevent them from carrying out stoma care. 4. L i v i n g in the Lower Mainland of B r i t i s h Columbia. 5. Able to speak and understand English. Patient c r i t e r i a were selected to give as much scope to the findings as possible. Epidemiological data from the 1986 National Cancer Institute Surveillance, Epidemiology and End Results Program (Jackson & Broadwell, 1986) described the person at r i s k f o r c o l o n cancer as between the ages of 35 and 74, with 94% o c c u r r i n g a f t e r the age of 50. Since an i n t e r v i e w format was being used to c o l l e c t d a t a , i t was necessary f o r the p a r t i c i p a n t s to understand and speak E n g l i s h . Although no g r e a t e r weight was g i v e n to l e a r n i n g needs r e l a t e d t o performance of p h y s i c a l tasks a s s o c i a t e d with stoma c a r e , the study p a r t i c i p a n t s * a b i l i t y to do these tasks was f e l t to be important. The m a j o r i t y of l i t e r a t u r e on t e a c h i n g programs f o r ostomy p a t i e n t s h i g h l i g h t s tasks a s s o c i a t e d with care of the stoma, and the r e s e a r c h e r f e l t i t would be important to v a l i d a t e the need. Per m i s s i o n to conduct the study was obtained from the U n i v e r s i t y of B r i t i s h Columbia B e h a v i o r a l Sciences Screening Committee f o r Research and Other S t u d i e s I n v o l v i n g Human Subjects (UBC E t h i c s Committee). Pe r m i s s i o n to conduct the r e s e a r c h a t Shaughnessy H o s p i t a l (now U n i v e r s i t y H o s p i t a l , Shaughnessy S i t e ) and a t Vancouver General H o s p i t a l was obtained from the h o s p i t a l s ' r e s e a r c h committees. Approval to conduct the study i n c l u d e d i n i t i a l c o n t a c t with p a t i e n t s i n h o s p i t a l and a p p r o v a l to review the p a t i e n t s ' r e c ords to o b t a i n demographic data. Surgeons i n one h o s p i t a l whose p a t i e n t p o p u l a t i o n s met c r i t e r i a f o r i n c l u s i o n i n the study were gi v e n an information l e t t e r (Appendix IV) about the study. The l e t t e r was followed up personally by the researcher, and a l l surgeons gave verbal consent for their patients to be approached to be involved in the study. At the second hospital the Vice-president of Medicine gave consent on behalf of the surgeons. Permission was documented In a l e t t e r to the researcher. Procedure The enterostomal therapists (three) at both hospitals were introduced to the study through review of the research proposal and were included in the approval process. A l l three reviewed the interview format (Appendix VI) and confirmed potential areas of learning needs based on th e i r personal experience with patients having permanent colostomies. The experience of the enterostomal therapists included both inpatients and outpatients. The head nurses of hospital units having the majority of stoma patients were also introduced to the study. In the f i r s t hospital chosen, nursing s t a f f were invited to an education session to review the purpose of the study, and to introduce them to a nursing study, as t h i s was the f i r s t study done on a s u r g i c a l n u r s i n g u n i t . T h i s was not done i n the second h o s p i t a l , as the D i r e c t o r of Nursing Research r e p o r t e d t h a t n u r s i n g s t a f f were f a m i l i a r with n u r s i n g r e s e a r c h p r o t o c o l s . Subjects were approached i n h o s p i t a l p r i m a r i l y by the enterostomal t h e r a p i s t , but on o c c a s i o n by the head nurse, and were gi v e n a " L e t t e r of Information" (Appendix I V ) . Those p a t i e n t s (n = 8) who agreed to meet with the r e s e a r c h e r were v i s i t e d while i n h o s p i t a l , had t h e i r questions r e g a r d i n g the study answered, and signed a consent form a g r e e i n g to p a r t i c i p a t e i n the study. The r e s e a r c h e r r e c o g n i z e d t h a t c r e a t i o n of a stoma has a major impact on a person's s e l f - i m a g e , making the p a t i e n t p a r t i c u l a r l y v u l n e r a b l e . T h e r e f o r e , the r e s e a r c h e r t r i e d to v i s i t p a t i e n t s the day p r i o r to d i s c h a r g e , to minimize the a s s o c i a t i o n between care g i v e n i n the h o s p i t a l and involvement i n the study. In two i n s t a n c e s p a t i e n t s were di s c h a r g e d e a r l y , and the f i r s t c o n t a c t was made by telephone, and a v e r b a l consent to p a r t i c i p a t e i n the study was g i v e n . Each p a t i e n t (n = 8) was contacted by telephone approximately ten days p o s t d i s c h a r g e , and the time and date f o r an i n t e r v i e w agreed upon. Interviews were conducted i n the p a t i e n t ' s homes, and l a s t e d from one-to-one-and-a-half hours. P r i o r to beginning each i n t e r v i e w , the purpose of the study was reviewed, and any o u t s t a n d i n g q u e s t i o n s were answered. Sample The study sample was a convenience one (n = 8 ) , from two h o s p i t a l s i n the Greater Vancouver a r e a . The i n v e s t i g a t o r i s aware of o n l y two p o s s i b l e candidates who d i d not wish to be p a r t of the study sample. A l l those who agreed to be p a r t of the study i n d i c a t e d t h a t t h e i r m o t i v a t i o n was to a s s i s t others having t h i s type of su r g e r y . Data C o l l e c t i o n The i n t e r v i e w guide (Appendix VI) was used to provide d i r e c t i o n f o r data c o l l e c t i o n . Broad, open-ended que s t i o n s were used a t the beginning of the i n t e r v i e w . The questions were designed to be nonthreatenlng, and to a l l o w study p a r t i c i p a n t s to t a l k about t h e i r experience p r i o r to surgery, d u r i n g h o s p i t a l i z a t i o n , and at home. Study p a r t i c i p a n t s were encouraged to d e s c r i b e t h e i r l e a r n i n g needs based on p r i o r e x p e r i e n c e , t h e i r unique l i f e s t y l e , and t h e i r 45 perceived strengths. Prior to each home interview, patient demographic data were collected from the patient record in the hos p i t a l . This was done to minimize the length of the interview. Discussion with the enterostomal therapists had suggested that individuals who undergo permanent colostomies complain of s i g n i f i c a n t fatigue for weeks afte r discharge from hos p i t a l . The Interview guide (Appendix VI) outlined areas of p o t e n t i a l l y needed information required by colostomy patients. These areas of need were selected based on a compilation of Patient Outcome Standards developed by the International Association of Enterostomal Therapists and review of l i t e r a t u r e on stoma patient education programs. The content of the interview guide was reviewed and validated by the enterostomal therapists from the two major teaching hospitals. Interviews with study participants were tape recorded and transcribed. Data were reviewed, and themes r e l a t i n g to information needs emerged. I n i t i a l l y , some study patients were concerned about having the interview recorded. They were reassured that, i f they wished, portions of the tape could be erased, or cert a i n pieces on information not used. Study participants were assured that a l l information 46 would be treated in confidence and names would not be used in any reports of the study, data would be coded, and a l l tapes erased at the end of the data c o l l e c t i o n period. During interviews where questions r e l a t i n g to health care arose, the researcher i d e n t i f i e d the appropriate resources and recommended that participants follow up with their concerns. Where the researcher f e l t q u a l i f i e d to answer questions or provide supporting information, she did. She reinforced, however, that her purpose was to gather information from the study participant. Data, A n a l y s i s Transcribed data from the taped interviews were analysed to i d e n t i f y frequency of p a t i e n t - i d e n t i f i e d learning needs, resource u t i l i z a t i o n , patients' perception of adequacy of information, appropriate timing of information, and information d e f i c i t s . Assessment of patients' perceived learning needs and the interpretation of data collected have been directed by use of the UBC Nursing Model (Campbell, 1987). Patients' perceived learning needs were examined in r e l a t i o n to the needs of the behavioral subsystems. 47 No attempt was made to evaluate coping behaviors that already existed or that were developed as a r e s u l t of Information given during the h o s p i t a l i z a t i o n . For each study patient, emerging themes were examined in r e l a t i o n to impact on any, or a l l , of the nine subsystems. This was followed by a search for commonalities across the study group. During the interview process, the researcher attempted to validate perceived themes as they were i d e n t i f i e d by the study participant, and confirm the relevance to the individual being interviewed. Findings are presented in the following chapter. 48 Chapter Four F i n d i n g s of the study The f i r s t s e c t i o n d e s c r i b e s the study sample, and i s f o l l o w e d by study f i n d i n g s . Major themes of study p a t i e n t s are d e s c r i b e d i n r e l a t i o n to the o b j e c t i v e s of the study, and c a t e g o r i z e d a c c o r d i n g to b a s i c human needs (Campbell, 1987). Major themes i d e n t i f i e d through the i n t e r v i e w s were: coping with a d i a g n o s i s of cancer; coping with p a i n ; the impact of f a t i g u e and lack of a c t i v i t y on s l e e p p a t t e r n s ; the need to have a p o s i t i v e i n t e r a c t i o n with recovered persons with a stoma; and the need f o r a s u p p o r t i v e and l o v i n g s i g n i f i c a n t o t h er. The sample (n = 8) was composed of three females, age 37 - 60 years, and f i v e males, age 51 - 70 y e a r s . The range of ages was 37 - 70, the average age was 55. T h i s age r e l a t e d data i s c o n s i s t e n t with the 1986 e p i d e m i o l o g i c a l data from the N a t i o n a l Cancer I n s t i t u t e , which d e s c r i b e d the person at r i s k f o r c o l o n cancer as between the ages of 35 and 74. A l l sample p a t i e n t s had abdominal p e r i n e a l r e s e c t i o n s as a r e s u l t of cancer of the lower bowel and rectum. Seven s u r g e r i e s were done on an e l e c t i v e b a s i s , one on an emergency b a s i s . F i v e of the e i g h t had a d j u n c t i v e therapy: One had chemotherapy, three had r a d i a t i o n therapy, one had both. Four had p o s t o p e r a t i v e c o m p l i c a t i o n s : One had an abscess i n her p e r i n e a l wound p o s t d i s c h a r g e , and was being t r e a t e d f o r i t a t home; one had a bowel o b s t r u c t i o n p o s t d i s c h a r g e and returned to h o s p i t a l ; two had c o m p l i c a t i o n s while i n h o s p i t a l , one r e l a t e d to a l c o h o l withdrawal and a s p i r a t i o n pneumonia, and the other to a dehiscence of h i s abdominal wound. Of the e i g h t , f i v e had a p o s i t i v e p r o g n o s i s : a c c o r d i n g to t h e i r account the tumor was removed, and they were l o o k i n g forward to r e c o v e r y . Of the remaining t h r e e , one p a t i e n t was t e r m i n a l , and the remaining two were u n c e r t a i n of t h e i r p r o g n o s i s . F i v e of the p a r t i c i p a n t s worked p r i o r to surgery. Four planned to r e t u r n to work, and the f i f t h was n e a r i n g r e t i r e m e n t age and b e l i e v e d t h a t she would not be r e t u r n i n g to work. F i v e of the p a r t i c i p a n t s l i v e d with a spouse, one was separated and l i v e d with a teenaged son, one was widowed and l i v e d with her daughter and g r a n d c h i l d r e n , and one was s i n g l e and l i v e d a l o n e . The open-ended questions used at the beginning of the i n t e r v i e w s gave p a r t i c i p a n t s the o p p o r t u n i t y to 50 d e s c r i b e what i t was l i k e f o r them to have a colostomy. A l l p a r t i c i p a n t s (n = 8) used t h i s as an o p p o r t u n i t y to " t e l l t h e i r s t o r y " . The f o l l o w i n g d e s c r i p t i o n s are samples of the s t o r i e s r e l a t e d by four p a r t i c i p a n t s . The other four p a r t i c i p a n t s a l s o had s t o r i e s to t e l l . One p a r t i c i p a n t d e s c r i b e d the experience of being t o l d by the o n c o l o g i s t t h a t she was going to d i e . She d e s c r i b e d her anger with him, hi s p e r c e i v e d i n s e n s i t i v i t y and lack of support, and her f e e l i n g s of d e s p a i r : He spent most of h i s time t e l l i n g me how he wasn't l o o k i n g forward to t h i s v i s i t and how p e r s o n a l l y d i f f i c u l t i t was f o r him to t e l l me the d i a g n o s i s . He d i d n ' t see me as an i n d i v i d u a l , but as j u s t another s t a t i s t i c . He added up a l l the p o i n t s a g a i n s t me and decided I was going to d i e . I t was o n l y a f t e r she d e s c r i b e d her r e a c t i o n to the p h y s i c i a n and how she d e a l t with the i n f o r m a t i o n t h a t she went on to d e s c r i b e what changes had occurred i n her l i f e as a r e s u l t of the colostomy. Another p a r t i c i p a n t d e s c r i b e d h i s v i s i t to the emergency department the day a f t e r d i s c h a r g e from h o s p i t a l , f o r a problem u n r e l a t e d to the colostomy. He d e s c r i b e d f e e l i n g s of anger, lack of c o n t r o l , a pe r c e i v e d lack of c r e d i b i l i t y with the emergency p h y s i c i a n when d e a l i n g with the problem. He summed up the experience i n the f o l l o w i n g way: "Well, I guess I'm going to have to be i n a b s o l u t e , w r i t h i n g agony to 51 go to [ h o s p i t a l ] " . D e s c r i p t i o n s of a spouse's medical problems were the focus of two p a r t i c i p a n t s . They r e l a t e d t h e i r r e s p o n s i b i l i t i e s f o r t h e i r spouses' h e a l t h , and t h e i r r o l e as p r o v i d e r of emotional and p h y s i c a l support. One p a r t i c i p a n t , whose wife had a colostomy twenty years ago, spent c o n s i d e r a b l e time d e s c r i b i n g her treatment, her r e a c t i o n to the colostomy, and her present s t a t e of mind i n r e l a t i o n to h i s surgery. She was i n shock when the d i a g n o s i s came through on my biopsy. As a matter of f a c t , she was p r e t t y w e l l i n shock when I came out of the h o s p i t a l , s t i l l i n trauma about the s i t u a t i o n . I t appeared t h a t a l l p a r t i c i p a n t s were s e t t i n g the stage p r i o r to d e s c r i b i n g the impact that t h e i r c o l o s t o m i e s had on t h e i r l i v e s . I d e n t i f i c a t i o n of New Knowledge and S k i l l s Needed to Cope with the Colostomy Care of the Colostomy A l l p a r t i c i p a n t s acknowledged the need to be provided with i n f o r m a t i o n r e l a t i n g to p h y s i c a l care of t h e i r stoma while they were i n the h o s p i t a l . Information given to the p a r t i c i p a n t s , and i d e n t i f i e d as u s e f u l to them, i n c l u d e d i n f o r m a t i o n about choosing t an a p p r o p r i a t e ostomy a p p l i a n c e , c l e a n s i n g of the stoma, care of the s k i n around the stoma, changing the a p p l i a n c e , c l e a n s i n g the a p p l i a n c e between changes, and use of deodorants f o r the a p p l i a n c e . Although p a r t i c i p a n t s acknowledged t h a t they were given i n f o r m a t i o n about care of the colostomy, not a l l were prepared to cope with stoma care once they were home from the h o s p i t a l . One p a r t i c i p a n t s a i d : The reason I couldn't handle i t , I f i g u r e d I had to.o much on my hands to s t a r t with, without worrying about the bag, the colostomy. I was a l i t t l e b i t depressed when I came home . . . I thought I'd j u s t had enough. Negative f o r c e s such as p a i n , d e p r e s s i o n , lack of energy, appeared to be st r o n g e r than the need f o r mastery over the care of the stoma. This p a r t i c i p a n t d e s c r i b e d h i s wife as s u p p o r t i v e . She a s s i s t e d with stoma and i n c i s i o n c a r e . The spousal support was a p o s i t i v e f o r c e f o r h i s need f o r dependence, but a negative f o r c e i n terms of m o t i v a t i n g the p a r t i c i p a n t to i n v o l v e h i m s e l f i n the care of h i s stoma. One p a r t i c i p a n t , who i n i t i a l l y was able to manage stoma care on d i s c h a r g e from h o s p i t a l , developed an abscess i n her p e r i n e a l wound. She d e s c r i b e d t h i s as 53 a "setback". She r e l i e d i n c r e a s i n g l y on a n a l g e s i c s to c o n t r o l her p a i n . The a n a l g e s i c s caused her to f e e l weak, and l e s s i n c o n t r o l . She d e s c r i b e d t h a t f e e l i n g as "woozy". A home care nurse monitored the i n f e c t i o n d a i l y , and took over the care of her colostomy. She d e s c r i b e d t h i s p e r i o d the f o l l o w i n g way: I had a setback. I j u s t f e l t I c ouldn't do i t . For a w h i l e , I wasn't c o n f i d e n t . I was a f r a i d , I guess due to my h e a l t h , r e a l l y , because I was shaking from being s i c k . I t h i n k t h a t was i t . Negative f o r c e s such as p a i n , r e a c t i o n to p a i n medication, malaise from the i l l n e s s and e f f e c t of the medication, decreased t h i s person's a b i l i t y to cope with stoma c a r e , even though she i n i t i a l l y had the knowledge and s k i l l s necessary to c a r r y out the c a r e . Those p a r t i c i p a n t s (n = 4) who were c o n f i d e n t o * about colostomy care d e s c r i b e d the f o l l o w i n g : The stoma pa r t hasn't c r e a t e d a d i f f i c u l t y . The colostomy was secondary, i t was the l e a s t of my problems. I'm a p r i v a t e person. I don't want anyone e l s e . I t would be l i k e a s k i n g , on a normal day, a s k i n g someone to come i n and wipe your behind. You j u s t don't do t h a t , as f a r as I'm concerned. The colostomy i s secondary to the other problem. I'm f e e l i n g comfortable with doing i t on my own. Two of the p a r t i c i p a n t s had other s i g n i f i c a n t h e a l t h care problems: One was a d i a b e t i c , and one had 54 u r i n a r y problems. The s i g n i f i c a n c e to them of the other problems minimized concerns they may have had over stoma c a r e . The other h e a l t h problems appeared to give these p a r t i c i p a n t s a d i f f e r e n t p e r s p e c t i v e . They were more m a t t e r - o f - f a c t about stoma ca r e , and how they went about i n c o r p o r a t i n g i t i n t o t h e i r l i v e s . The other h e a l t h care problems were p o s i t i v e f o r c e s i n r e l a t i o n to s e l f - c a r e of the stoma, but negative f o r c e s i n t h a t they c r e a t e d i n c r e a s e d demands of energy f o r h e a l i n g . D i e t and C o n t r o l of Bowel Movements Information needs r e l a t e d to d i e t and bowel movements were considered together by p a r t i c i p a n t s . S i x p a r t i c i p a n t s d e s c r i b e d l i m i t e d m o d i f i c a t i o n s to d i e t as a r e s u l t of the colostomy. One s a i d : "The t h i n g s I'm not supposed to eat, I don't l i k e to begin w i t h . " Another p a t i e n t , who had shared h i s wife's d i e t f o r twenty years (she a l s o has a colostomy) s a i d : My one love i n vegetables was creamed corn, and I can't have creamed co r n . I've been e a t i n g about e v e r y t h i n g , s t a y i n g away.from f a t t y foods, and you can't eat too much f r u i t . I don't worry about d i e t . I f I n o t i c e the s t o o l i s hard, I ' l l d r i n k some prune j u i c e . 55 Information provided to s e v e r a l p a r t i c i p a n t s proved to be p r o b l e m a t i c f o r them. One s a i d : I was t o l d "eat anything you want". So of course I a t e . I ate e v e r y t h i n g -- sausage, potatoes, and a l l those t h i n g s . Mom was with us a t the time, and she cooked a r e a l good meal. The next day I ate l i c o r i c e and a c h o c o l a t e bar with nuts, plus r e g u l a r e a t i n g . That n i g h t I got cramps, and had to go back i n tto h o s p i t a l ] . One p a r t i c i p a n t , who admitted to a d r i n k i n g problem, and who worked an evening s h i f t , d e s c r i b e d the f o l l o w i n g : I had to change my l i v i n g h a b i t s and my e a t i n g h a b i t s . I used to eat before I went to work and when I got home. A . . . . [ h i s wife] i s t r y i n g to t a l k me i n t o t a k i n g a lunch with me. About h i s a l c o h o l i n t a k e , he s a i d : I f I d i d d r i n k , she [the enterostomal t h e r a p i s t ] t o l d me how sloppy my s t o o l w i l l be. And i f you're going to come home at two o'clock i n the morning and t r y to c l e a n out your colostomy, i f you're drunk you're going to make a t e r r i b l e mess. One of the reasons I have no qualms s a y i n g t h a t the d r i n k i n g i s over with i s t h a t I never want to go through what I went through again [ t h i s p a r t i c i p a n t had d e l i r i u m tremens while i n h o s p i t a l ] . I t was more than enough, thank you. The a l c o h o l abuse and e a t i n g p a t t e r n d e s c r i b e d acted as a negative f o r c e by l i m i t i n g h i s energy a v a i l a b l e f o r a c t i v i t y , and producing l o o s e , u n p r e d i c t a b l y timed bowel movements. T h i s p a r t i c i p a n t acknowledged that the weakness and f a t i g u e he was f e e l i n g would l i k e l y s t i l l be a 56 c o n s i d e r a t i o n when he returned to work. He re c o g n i z e d t h a t he would need to change h i s e a t i n g p a t t e r n s to provide f o r i n c r e a s e d energy demands while he was a t work. He was aware t h a t a high a l c o h o l i n t a k e , combined with low food i n t a k e , would make the bowel movement loose and would complicate c o n t r o l over bowel movements, and t h a t emptying or changing the bag while i n t o x i c a t e d c o u l d r e s u l t i n s p i l l s . Another p a r t i c i p a n t , who d e s c r i b e d h i m s e l f as "a b i g beer d r i n k e r " , d e s c r i b e d h i s d i e t i n the f o l l o w i n g way: E v e r y t h i n g t h a t ' s bad f o r you, I l i k e -- f i s h and c h i p s , f r e n c h f r i e s , beer. You're not supposed to eat bacon, y o u ' l l get cancer . . . you l i s t e n to everyone about these t h i n g s , you wouldn't be e a t i n g enough to keep y o u r s e l f a l i v e . T h i s p a r t i c i p a n t ' s food p r e f e r e n c e s were l i k e l y to i n f l u e n c e h i s c a p a c i t y to c o n t r o l the type and t i m i n g of h i s bowel movements. He d i d modify h i s beer d r i n k i n g , although he hadn't been t o l d to do so. No one had d i s c u s s e d a l c o h o l with him. When questioned whether he had asked s p e c i f i c a l l y about a l c o h o l , he s t a t e d : "No, I'm stubborn. I'm gonna go f o r q u i t e a w h i l e , I ' l l go f o r 100 days anyway, on the wagon." One p a r t i c i p a n t made a major d e c i s i o n about change to d i e t , and was i n v e s t i g a t i n g a m a c r o b i o t i c d i e t , 57 which she d e s c r i b e d as r e l y i n g p r i m a r i l y on g r a i n s , beans, and r i c e . She was aware t h a t such a d i e t c o u l d be d e f i c i e n t i n p r o t e i n . She had done a s i g n i f i c a n t amount of i n v e s t i g a t i o n , i n c l u d i n g r e a d i n g and a t t e n d i n g m a c r o b i o t i c cooking c l a s s e s . She was, at the time of the i n t e r v i e w , undergoing chemotherapy, so she had decided to continue to use p o u l t r y and f i s h i n her d i e t , because of her concerns about p r o t e i n intake for t i s s u e r e p a i r . She d i d i n d i c a t e t h a t , once the chemotherapy was f i n i s h e d , she would eat a t o t a l l y m a c r o b i o t i c d i e t . T h i s p a r t i c i p a n t i d e n t i f i e d l e a r n i n g needs i n areas c o n s i d e r e d to be n o n t r a d i t i o n a l by h e a l t h care workers, or which were not i n t r o d u c e d by other p a r t i c i p a n t s . These i n f o r m a t i o n needs were r e l a t e d p r i m a r i l y to her d i a g n o s i s of cancer and her t e r m i n a l p r o g n o s i s . D i s c u s s i o n s of i n f o r m a t i o n needs r e l a t i n g to bowel movements were f r e q u e n t l y r e l a t e d to the p r o d u c t i o n of gas. Issues t h a t were addressed r e l a t e d to n o i s e , and what t o do i f there was unexpected noise or s m e l l while they were with others ( f a m i l y or f r i e n d s ) . Three p a r t i c i p a n t s d e s c r i b e d t h e i r concerns i n the f o l l o w i n g way: The colostomy, I know i t ' s t h e r e . I think a l o t about t h a t , because you can't help but know i t . I'm always f e e l i n g i t to make sure there's not too much gas i n i t . 58 I'm wondering, i f I go, l e t ' s say, to a f u n e r a l , e v e r y t h i n g i s q u i e t , and my colostomy a c t s up, with wind and gas, people won't know I've got a bag, i t ' s l i a b l e to be embarrassing. I don't know what to do about t h a t . I t h i n k I s m e l l . . . I warned someone t h a t I was s m e l l i n g , and asked i f he wanted me to go o u t s i d e , and he s a i d he d i d n ' t s m e l l a t h i n g . Chances are I s m e l l i t , and nobody e l s e . These comments i n d i c a t e the p a r t i c i p a n t s ' p e r c e p t i o n t h a t they are somehow l e s s a t t r a c t i v e , l e s s s o c i a l l y a c c e p t a b l e , i f they have gas from t h e i r colostomy. The p r o d u c t i o n of gas i s a negative f o r c e on t h e i r need f o r r e s p e c t , acceptance, and i n c l u s i o n by o t h e r s . One p a r t i c i p a n t d e s c r i b e d h i s coping s t r a t e g y , i n r e l a t i o n to gas, t h i s way: Well, i t ' s something you've got to get used t o , you have no c o n t r o l i f you pass gas. The noise i s t h e r e ! You can o n l y say 'pardon me', so i t ' s embarrassing, but i t ' s j u s t something you have to get along with, and I j u s t hope they understand. Frequency of bowel movements was a concern f o r a number of p a r t i c i p a n t s . Comparisons were made between the frequency of bowel movements before and a f t e r the colostomy. One p a r t i c i p a n t r e c i t e d the dates and times of h i s bowel movements. Another p a r t i c i p a n t d e s c r i b e d f e e l i n g s of a n x i e t y when she hadn't had a bowel movement f o r three days a f t e r d i s c h a r g e from h o s p i t a l . She c a l l e d the stoma t h e r a p i s t , her surgeon 59 and her g e n e r a l p r a c t i t i o n e r about her concerns. She feared bowel o b s t r u c t i o n , s i n c e that was what brought her to h o s p i t a l i n i t i a l l y . Her concerns motivated her to r e t u r n to the stoma c l i n i c to o b t a i n more i n f o r m a t i o n about d i e t and a c t i v i t y as they r e l a t e d to the frequency of bowel movements. One of the p a r t i c i p a n t s who was coping with changes i n e l i m i n a t i o n p a t t e r n s s t a t e d : I'm very i r r e g u l a r now, and I used to be q u i t e r e g u l a r before I had my stoma, but i t ' s a matter of u s i n g the r i g h t l a x a t i v e , and time to get y o u r s e l f acquainted to i t . Bowel movements were an i n d i c a t i o n to some (n = 5) t h a t the s u r g e r y was a success and t h e i r stoma was f u n c t i o n i n g p r o p e r l y . C o n s t i p a t i o n , as i d e n t i f i e d by the p a r t i c i p a n t s , posed a t h r e a t , and was a negative f o r c e f o r t h e i r f e e l i n g of s e c u r i t y . A c t i v i t y i n and Outside the Home Six p a r t i c i p a n t s a c t i v e l y sought i n f o r m a t i o n about e x p e c t a t i o n s of a c t i v i t y a f t e r d i s c h a r g e from h o s p i t a l . A c t i v i t y was i d e n t i f i e d i n r e l a t i o n to t h e i r p r e s u r g e r y s t a t e . A l l p a r t i c i p a n t s i d e n t i f i e d d i f f e r e n c e s between t h e i r expected energy l e v e l and what they a c t u a l l y f e l t . P a i n was a major l i m i t i n g 60 f a c t o r f o r a l l p a r t i c i p a n t s . I d e n t i f i e d p a i n was p r i m a r i l y i n r e l a t i o n to the p e r i n e a l i n c i s i o n . F a t i g ue a s s o c i a t e d with p r e v i o u s l y u n s t r e s s f u l s o c i a l i n t e r a c t i o n was a l s o i d e n t i f i e d as a f a c t o r which l i m i t e d a c t i v i t y . V i s i t s by f r i e n d s and r e l a t i v e s were t i r i n g . S i t t i n g , because of the p e r i n e a l i n c i s i o n , was uncomfortable. One man summarized h i s concerns: When I came out of h o s p i t a l , I had l o t s of company, some stayed too long, and i t ' s hard on a person . . . i t got out of hand a l i t t l e b i t . Anyway, I j u s t got up and went and l a y down i n the bedroom . . . pass on t h a t i t ' s okay to have company, but keep i t s h o r t , 'cause you can't h o l d a person's i n t e r e s t t h a t long, j u s t 'Nice to see ya', t a l k f o r a whil e , then 'See ya l a t e r when you're f e e l i n g b e t t e r ' , then l e a v e . That's my r u l e f o r company. T r a v e l was i d e n t i f i e d as important to f i v e p a r t i c i p a n t s . Information about when they c o u l d t r a v e l , and r e s t r i c t i o n s because of a d j u n c t i v e therapy ( r a d i a t i o n and chemotherapy) were important to study p a r t i c i p a n t s , three of whom d e s c r i b e d t h e i r e x p e c t a t i o n s f o r t r a v e l as f o l l o w s : I t o l d my doctor I wanted to get away as soon as p o s s i b l e f o r h o l i d a y s , he f i g u r e d i n e i g h t to ten weeks I should be able to t r a v e l . I ' l l see him on Wednesday, and th a t w i l l be high on my 'Questions & Answers'. The long and the s h o r t of i t i s , I have to come back f o r treatment, r a d i a t i o n , however I'm going away f o r Christmas. 61 We [ p a r t i c i p a n t and wife] intend to give up apartment managing f a i r l y soon, then w e ' l l probably do a l o t of t r a v e l l i n g . . . to the East Coast. We know the East Coast f a i r l y w e l l , and P r i n c e Edward I s l a n d i s one of our f a v o r i t e s p o t s . Pain P a r t i c i p a n t s were not prepared f o r the amount of pain they had a f t e r d i s c h a r g e from h o s p i t a l . Not a l l p a r t i c i p a n t s d e s c r i b e d the s e n s a t i o n as p a i n : Discomfort, aches, soreness were words used to d e s c r i b e what they were f e e l i n g . A l l d e s c r i b e d an impact on energy l e v e l , the a b i l i t y to get back to normal and resume a c t i v i t i e s of d a i l y l i v i n g . Three p a r t i c i p a n t s d e s c r i b e d t h e i r p a i n i n the f o l l o w i n g ways: I've been i n the house, and I've j u s t s t a r t e d g e t t i n g out. I'm s t i l l s o r e , and I can't s i t p r o p e r l y , and . . . you know, i t ' s aches and pains . . . I was sore a l l over. I s t i l l have a f a i r amount of pa i n and d i s c o m f o r t with t h i s . I t ' s p a i n f u l at times to walk. This i s about the lo n g e s t I've s a t s t i l l . One p a r t i c i p a n t , when d i s c u s s i n g the use of pa i n medication and lack of a c t i v i t y , s a i d : " I t ' s due to not h a n d l i n g the p a i n . " Another p a r t i c i p a n t ' s recommendation was t o : 62 "Prepare the pat ients for more pa in . I had no idea i t was going to be as pa in fu l as i t was." A c t i v i t i e s which were l imi ted because of the pain described included helping with household chores, such as vacuuming and shopping; c h i l d care and home care; get t ing back to work, i f only part t ime; and s o c i a l i z i n g with f r i e n d s . Pain acted as a negative force on the p a r t i c i p a n t s ' a b i l i t y to carry out former r o l e s . This l i m i t a t i o n on former ro les acted as a negative force on the i r s e l f - r e s p e c t , and the i r need for inc lus ion and int imacy. C l o s e l y associated with pain and l imi ted a c t i v i t y were changes to former sleep pat terns. A l l pa r t i c ipan ts described changes in sleep and rest requirements since being home. Sleep and rest patterns took the form of naps during the day to cope with the fa t igue , but resul ted in i n a b i l i t y to f a l l asleep at night or , a l t e r n a t i v e l y , waking up at night and not being able to get to sleep again . Coping s t ra teg ies described by par t ic ipants when they were unable to sleep inc luded: 1: having a s i t z bath or changing the colostomy bag 2 : taking s leeping p i l l s 63 3: t a k i n g pain medication 4: l i s t e n i n g to the r a d i o 5: reducing time spent napping d u r i n g the day 6: i n c r e a s i n g a c t i v i t y d u r i n g the day, such as going f o r a walk. Concerns over s l e e p were not always l i n k e d with the colostomy, but were0 a s s o c i a t e d with p a t t e r n s e s t a b l i s h e d while h o s p i t a l i z e d . One p a r t i c i p a n t d e s c r i b e d the hospital/home s l e e p p a t t e r n as f o l l o w s : I c o u l d n ' t s l e e p , of a l l the times i t was l e a s t e n j o y a b l e . I walked around, and walked around, and I became a f i x t u r e on the [ward] f l o o r . Family and S o c i a l R e l a t i o n s h i p s P a r t i c i p a n t s i n d i c a t e d a need to t a l k to others who had a colostomy. Four p a r t i c i p a n t s a c t i v e l y sought out f r i e n d s and f a m i l y who had a colostomy, or members of the Ostomy A s s o c i a t i o n . Information needs were d e s c r i b e d i n the f o l l o w i n g ways: I happen to have a good f r i e n d who t a l k e d with me before I went i n t o the h o s p i t a l . He's 69 now, and has had a colostomy f o r four y e a r s . He g o l f s , he f i s h e s , he hunts . . . he does e v e r y t h i n g , and I thought t h a t i f a t h i s age he can do i t , a t my age I can do i t too. I f e l t r e a l l y good about t h a t p a r t of i t . 64 Concerns about l e i s u r e time a c t i v i t y were of p a r t i c u l a r importance to t h i s person. He had r e t i r e d r e c e n t l y , and had an image of what l i f e was going to be l i k e : I was r e a l l y l o o k i n g forward to g e t t i n g out and going f i s h i n g . Then I found out that I had the tumor, and i t kind of knocked the legs out from under me f o r awhile. Now I'm going to have to change my l i f e s t y l e from what i t was b e f o r e . My l i f e , I j u s t kind of l i k e d i t , there was nothing to worry about. The value of i n f o r m a t i o n gained from t a l k i n g to others who had a colostomy was d e s c r i b e d by three p a r t i c i p a n t s : I have a f r i e n d who's had a bag f o r twenty y e a r s , and he leads a normal l i f e . T h i s helped, i t r e a l l y d i d . I met with KR from the Ostomy A s s o c i a t i o n . She gave me a bunch of l i t e r a t u r e . . . and a l o t of i n f o r m a t i o n about what they were going to be doing with me. Thanks to her, I went to the enterostomal t h e r a p i s t a t [ h o s p i t a l ] before the s u r g e r y . T h i s p a r t i c i p a n t was p a r t i c u l a r l y concerned about where the stoma was to be l o c a t e d . He had concerns about h i s appearance and what he c o u l d wear to work. One p a r t i c i p a n t , where there was a f a m i l y h i s t o r y of c o l o n cancer, d e s c r i b e d memories of her g r a n d f a t h e r ' s s i t u a t i o n : I remember my g r a n d f a t h e r , and he had a colostomy bag . . . when he had h i s o p e r a t i o n , then he moved to the garage, made h i m s e l f a bedroom i n the garage, because Grandma c o u l d n ' t stand the s m e l l . I t was then t h a t t h i s woman decided to t a l k to an uncle who a l s o had a colostomy: I t a l k e d to my uncle, we'd come a long way s i n c e Grandfather's day. He s a i d he and h i s wife had no problems a t a l l . Her uncle e x p l a i n e d h i s stoma c a r e . A f t e r t h a t d i s c u s s i o n , she decided her care c o u l d be even more s t r e a m l i n e d , and began to a c t i v e l y seek i n f o r m a t i o n about her stoma from the enterostomal t h e r a p i s t . Although study p a r t i c i p a n t s were not able to i d e n t i f y e x p l i c i t l y why they b e l i e v e d t a l k i n g to or meeting with someone who had a colostomy was important, i t was a theme which ran through a l l i n t e r v i e w s . There was a sense t h a t t h i s person was l i v i n g proof t h a t there was l i f e a f t e r a colostomy. Three p a r t i c i p a n t s knew people who had a colostomy, and who shared i n f o r m a t i o n about l i v i n g with a colostomy, as w e l l as p r o v i d i n g emotional and s o c i a l support. One p a r t i c i p a n t , whose wife had a colostomy twenty years e a r l i e r , d e s c r i b e d how he and h i s wife had c o u n s e l l e d and supported a business a s s o c i a t e when he r e q u i r e d a colostomy. From d e s c r i p t i o n s g i v e n by p a r t i c i p a n t s , people they knew with c o l o s t o m i e s were w i l l i n g to share l i f e e xperiences i n an attempt to decrease the p a r t i c i p a n t s ' a n x i e t y . 66 Sexual R e l a t i o n s h i p s Two of the p a r t i c i p a n t s a c t i v e l y sought i n f o r m a t i o n about sexual a c t i v i t y , as w e l l as having d i s c u s s i o n s with the stoma t h e r a p i s t . Both were r e f e r r e d to other stoma p a t i e n t s of the same age and sex. One p a r t i c i p a n t d e s c r i b e d her f e e l i n g s t h i s way: Right now, the shape I'm i n , i t ' s going to be an awful long time before I even thi n k of doing a n y t h i n g . But you l i k e to know t h a t down the road, r i g h t now I don't have the d e s i r e , but down the road I might. I t ' s n i c e to know whether to t e l l y o u r s e l f to f o r g e t i t , i t ' s i m p o s s i b l e , or whether you can, 'cause t h a t ' s how r e l a t i o n s h i p s u s u a l l y end up. One other p a r t i c i p a n t d e s c r i b e d sexual r e l a t i o n s as being important to her. She l i n k e d her s e x u a l i t y c l o s e l y with her s e l f - i m a g e , and d e s c r i b e d her need to f e e l loved and c l o s e to her husband: My husband t h i n k s I'm b e a u t i f u l , and I f e e l b e a u t i f u l . The stoma hasn't changed t h a t . Female p a r t i c i p a n t s were more comfortable d i s c u s s i n g sexual i n f o r m a t i o n needs than the male p a r t i c i p a n t s . No male p a r t i c i p a n t v o l u n t e e r e d i n f o r m a t i o n , and when asked i f i n f o r m a t i o n on sex u a l r e l a t i o n s was e i t h e r d i s c u s s e d i n i t i a l l y or was sought, responses were vague, i . e . "Yes, the doctor brought the s u b j e c t up". (This p a r t i c i p a n t then 6 7 s t a t e d t h a t he was comfortable with h i s r e l a t i o n s h i p with h i s wife.) Another p a r t i c i p a n t responded: No, no d i s c u s s i o n . I was warned about t h a t when I had the p r o s t a t e . The doctor pointed out the l i m i t a t i o n s , which I accepted. I never c o n s i d e r e d myself s e x u a l , I had f r i e n d s h i p s . No, we take t h i s l i k e e v e r y t h i n g e l s e -- be g r a t e f u l f o r the good times, but don't make a b i g t h i n g of i t . Information Related to Diagnosis or Prognosis A l l study p a r t i c i p a n t s i d e n t i f i e d the need to have i n f o r m a t i o n about the surgery, the reason f o r i t , an e x p l a n a t i o n of a d j u n c t i v e therapy and what to expect as a r e s u l t of t h a t therapy, and t h e i r p r o g n o s i s . Information about prognosis was p a r t i c u l a r l y important to p a r t i c i p a n t s . One p a r t i c i p a n t d e s c r i b e d how he b e l i e v e s the need may be met: I t h i n k the booklet t h a t they provide i n the h o s p i t a l f o r colostomy p a t i e n t s i s an e x c e l l e n t one, and I thin k anybody with normal i n t e l l i g e n c e can read t h a t , and th e r e ' s diagrams i n there where the stoma i s placed on the body, and the reason f o r I t , and those t h a t can be hooked up a g a i n . I th i n k t h a t ' s a b e n e f i t t h a t should be looked a t , and a l s o the d i f f e r e n t treatments, people t h a t may have to have chemotherapy or r a d i a t i o n treatment,I t h i n k they should be f u l l y a d v i s e d , nothing h e l d back, f u l l y advised about what may happen t o them. Another p a r t i c i p a n t summed up her i n f o r m a t i o n needs i n t h i s area as f o l l o w s : 68 My q u e s t i o n s to him [her d o c t o r ] were "How long f o r r e c o v e r y , before I'm back to work?", and then I t a l k e d to him about the cancer treatments too, because t h a t kind of t h i n g worried me, the r a d i a t i o n and chemotherapy, because I had not heard anything good about t h a t , and even the r a d i a t i o n therapy I wasn't sure about. So b a s i c a l l y , j u s t those t h i n g s — how i s I t going to a f f e c t me, and how much time before I'm back to being where I was b e f o r e , as f a r as g e t t i n g around and g e t t i n g back to work? A number of p a r t i c i p a n t s wanted d e t a i l s of the surgery, wanted to know why the stoma was placed where i t was. One person d e s c r i b e d i t t h i s way: I've made a p o i n t of a s k i n g Dr. j u s t what d i d they do down t h e r e , how they got the stoma up where they do, how they get i t , t h i s k i n d of t h i n g . An attempt was made to understand what the d i a g n o s i s meant i n terms of how the body f u n c t i o n e d --how i t was taken apart and how i t was put back to g e t h e r . The tumor, a negative f o r c e , posed a t h r e a t to s u r v i v a l . P a r t i c i p a n t s sought i n f o r m a t i o n on d i a g n o s i s and prognosis to s a t i s f y t h e i r needs f o r s a f e t y and s e c u r i t y . When news of a p o s i t i v e prognosis was given to p a r t i c i p a n t s (n = 5), t y p i c a l r e a c t i o n s were: "When I woke up [from s u r g e r y ] , I had a l r e a d y made up my mind th a t I c o u l d l i v e with t h a t without any problems"; "The main concern was the cancer. That [the p o s i t i v e p r o g n o s i s ] more than r e l a x e d my mind"; and "I was more 6 9 concerned about g e t t i n g the cancer, and the colostomy came second". One p a r t i c i p a n t s t a t e d : When you're faced with something t h a t ' s normally a t e r m i n a l s i t u a t i o n , and you wake up to f i n d the pathology r e p o r t was Grade A, t h a t they'd recovered e v e r y t h i n g , though you're faced with a c e r t a i n amount of dismemberment, i t ' s a ve r y s m a l l p r i c e to pay f o r being a l i v e . One woman r e c a l l e d s h a r i n g the news with her son:: He s a i d "Oh, i s th a t a l l , but y o u ' l l be r i d of the cancer." I s a i d yes, and he s a i d "Well, Mom, t h a t ' s okay". That was the best answer I got from anybody . . . I s a i d w e l l , i t ' s okay. I d e n t i f i c a t i o n of Resources Used by P a r t i c i p a n t s The p a r t i c i p a n t s saw major sources of i n f o r m a t i o n as coming from the enterostomal t h e r a p i s t , the surgeon, and others who had a colostomy. Although home care nurses were i n v o l v e d with the care of a l l p a r t i c i p a n t s , they were not p e r c e i v e d as being a s i g n i f i c a n t i n f o r m a t i o n source. P a r t i c i p a n t s i n d i c a t e d t h a t the r o l e of the home care nurse was s u p p o r t i v e , r e i n f o r c i n g i n f o r m a t i o n and l e a r n i n g t h a t had o c c u r r e d d u r i n g h o s p i t a l i z a t i o n . The enterostomal t h e r a p i s t was considered to be the t e c h n i c a l expert r e g a r d i n g care of the stoma, i n c l u d i n g the type of a p p l i a n c e , hygiene a s s o c i a t e d with care of the stoma, e n s u r i n g s e c u r i t y of the 70 a p p l i a n c e , and care of the s k i n under i t . T y p i c a l comments made about the enterostomal t h e r a p i s t s i n c l u d e d : "I t r u s t i m p l i c i t l y " ; "Where would we be without ?"; and "I c o u l d n ' t ask f o r anything b e t t e r , f o r help and t r y i n g to give me c o n f i d e n c e " . Most of the i n f o r m a t i o n about d i e t a l s o came from the enterostomal t h e r a p i s t s . Only two p a r t i c i p a n t s had been r e f e r r e d to a d i e t i t i a n . Female p a r t i c i p a n t s d i s c u s s e d sexual concerns with the enterostomal t h e r a p i s t s . When asked i f the p h y s i c i a n had a l s o provided i n f o r m a t i o n i n t h i s a r e a , the r e p l y was: No, I d i d n ' t f e e l I'd get a s t r a i g h t answer from him, I d i d n ' t f e e l he'd be comfortable t a l k i n g about i t . . . I thought he'd probably t e l l me to "Ask ", so I d i d n ' t even b r i n g i t up with him. The p a r t i c i p a n t whose wife had a colostomy f e l t t h a t he was a resource to the nurses. His c o n t a c t with the stoma t h e r a p i s t was l i m i t e d to two occasions when she a s s i s t e d with h i s a p p l i a n c e . He was c r i t i c a l of the home care nurses, and f e l t t h a t although they had g e n e r a l knowledge, i t was not adequate. He s a i d : You wonder where they got t h e i r knowledge from, a l o t of i t i s i n c o n f l i c t . But they're very h e l p f u l , f o r the most p a r t . The r o l e of the home care nurse was not so much i n f o r m a t i o n g i v i n g , but to provide support, e i t h e r p h y s i c a l ( a s s i s t a n c e with a p p l i a n c e change and 71 d r e s s i n g s ) or to r e i n f o r c e p revious l e a r n i n g . They watch me. I wait u n t i l they come . . . hoping t h e y ' l l change the whole t h i n g . . . but then they say no, i t ' s not necessary. Most of the time I do i t on my own and she's g u i d i n g me, t e l l i n g me what to do. Two p a r t i c i p a n t s i n d i c a t e d t h a t the nurses c a r i n g for them i n h o s p i t a l gave i n f o r m a t i o n , one i n the form of a pamphlet on c a r e . In another i n s t a n c e , the u n i t nurse introduced the person to another stoma p a t i e n t who a l s o had a young f a m i l y and shared s i m i l a r concerns. One s u b j e c t commented on the general knowledge of the nurses on the u n i t : Not too many people know about i t , l i k e when was c l e a n i n g me up, the f i r s t time she was about to c l e a n i t up and put the two p i e c e s on, there was two or three nurses, we had the c u r t a i n s drawn, but "Oh, can I watch? I've never seen t h i s done b e f o r e . " And my d o c t o r , Dr. , doesn't seem to know a heck of a l o t about i t . When asked how he f e l t about having an audience, he r e p l i e d : I d i d n ' t f e e l bad at a l l — come one, come a l l --I don't c a r e . I f you want to watch, watch. I f i t ' s h e l p i n g you, i t ' s h e l p i n g me. The r o l e of the surgeon or s u r g i c a l r e s i d e n t , from the respondents' p e r s p e c t i v e , was to provide i n f o r m a t i o n on the s u r g i c a l procedure, to d i s c u s s the requirement f o r surgery, r e s u l t s of d i a g n o s t i c t e s t s and, f o r those who hadn't had t h e i r prognosis 72 confirmed while i n h o s p i t a l , to d i s c u s s t h i s . Two p a r t i c i p a n t s , who asked t h e i r surgeons questions about stoma care were r e f e r r e d back to the enterostomal t h e r a p i s t by the p h y s i c i a n . F i v e of the p a r t i c i p a n t s sought, or were g i v e n , i n f o r m a t i o n from others who had a colostomy. P a r t i c i p a n t s were not able to s t a t e what s p e c i f i c l e a r n i n g needs were s a t i s f i e d , but used g e n e r a l d e s c r i p t i v e phrases such as: " I t helped, knowing someone s u r v i v e d f o r twenty y e a r s " , and "I got a l o t of i n f o r m a t i o n on what they were going to do with me". One person, who had two f r i e n d s with c o l o s t o m i e s , s a i d : "They o f f e r e d me any help , any a d v i c e , [answered] any q u e s t i o n s , they were v e r y good t h a t way, so I can't say that I d i d n ' t know about i t . " T h i s p a r t i c i p a n t found t h a t the s h a r i n g of i n f o r m a t i o n was important, although at the time of the i n t e r v i e w , he remembered l i t t l e of the content. Knowledge t h a t others with a colostomy s u r v i v e d , were accepted by spouses and f a m i l y , s o c i a l i z e d , r e t u r n e d t o work, and were a c t i v e i n s p o r t s , provided reassurance f o r these f i v e p a r t i c i p a n t s t h a t they too would s u r v i v e and resume t h e i r former r o l e s . 73 Adequacy and Timing of Information E v a l u a t i o n of the adequacy of i n f o r m a t i o n g i v e n to the p a r t i c i p a n t s was s u b j e c t i v e , and based on t h e i r p e r c e p t i o n s of whether i t met t h e i r needs or not. Three p a r t i c i p a n t s i d e n t i f i e d t h a t they had inadequate i n f o r m a t i o n about the surgery. These three p a r t i c i p a n t s d i d have d i f f i c u l t y coping with t h e i r colostomy when they were d i s c h a r g e d home, but none of the three a t t r i b u t e d i t to the lack of i n f o r m a t i o n given about t h e i r surgery. As an example, one p a r t i c i p a n t s a i d : He [the surgeon] t a l k e d to me, and kind of brushed i t o f f as ' j u s t an o p e r a t i o n ' . . . I s t i l l don't understand how they d i d my o p e r a t i o n . . . I can't comprehend how one can s t a r t above and the other below, and when they meet the ope r a t i o n ' s over. I kind of laughed about i t a t the time, but I r e a l l y don't understand what they d i d down t h e r e . When asked whether the surgeon had t o l d him what to expect of the surgery, t h i s man answered: "Well, no, the ET's helped me, they came i n and gave me a boo k l e t , they were r e a l l y v e r y h e l p f u l " . One woman ex p l a i n e d t h a t she knew she would have an opening i n her abdomen: "I knew I was going to have t h a t , of course, but I was s t i l l s u r p r i s e d . I was very s u r p r i s e d at the abdominal surgery t h a t I have. She was not aware that she would have a p e r i n e a l i n c i s i o n : "No, these t h i n g s are r e a l l y more than a s u r p r i s e , I guess". She then went on to d e s c r i b e her f e e l i n g s about the lack of i n f o r m a t i o n r e g a r d i n g her surgery: "At th a t time I wasn't angry, I got angry l a t e r . But I'm j u s t v e r y sad". When d i s c u s s i n g her sadness, she s a i d : "Why me? I th i n k t h a t ' s what i t i s " . And when t a l k i n g about her anger: "Because you're so h e l p l e s s , you're s i c k and you can't help y o u r s e l f , you have to r e l y on somebody". Seven of the p a r t i c i p a n t s b e l i e v e d they had adequate i n f o r m a t i o n about management of t h e i r colostomy p r i o r to di s c h a r g e from h o s p i t a l . One respondent, a woman, recogn i z e d t h a t she d i d not have adequate i n f o r m a t i o n , but f e l t t h a t p a r t of the r e s p o n s i b i l i t y was hers. A f t e r what she d e s c r i b e d as a " d i s a s t r o u s " s e s s i o n with her o n c o l o g i s t , who t o l d her she was going to d i e , she demanded an e a r l y d i s c h a r g e . Since she had had a temporary colostomy i n the past ( f o r a p e r i o d of two weeks, as a r e s u l t of a bowel o b s t r u c t i o n ) she b e l i e v e d t h a t the nurses assumed her to have s k i l l s t h a t she d i d not, i n f a c t , possess. She had never f u l l y demonstrated the ap p l i a n c e changing procedure to the enterostomal t h e r a p i s t . She s t a t e d : "I am the kind of person who 75 always seems i n c o n t r o l " , and because of t h i s she b e l i e v e d she d i d n ' t demonstrate a need f o r a s s i s t a n c e , nor d i d she ask f o r a s s i s t a n c e . She s t a t e d t h a t t h i s appearance of c o n t r o l i s her way of coping with new exp e r i e n c e s . She wanted those around her to see t h a t she was h a n d l i n g the s i t u a t i o n . As a r e s u l t of t h a t , she was sent home with, from her p e r c e p t i o n , inadequate s k i l l s and i n f o r m a t i o n , and no r e f e r r a l to the home care nurses. Of the seven who b e l i e v e d they had adequate i n f o r m a t i o n about colostomy c a r e , a l l r e q u i r e d some a s s i s t a n c e from the home care nurses. They p e r c e i v e d that they were given adequate i n f o r m a t i o n , but due to circumstances, not a l l of the i n f o r m a t i o n could be r e t a i n e d . One woman e x p l a i n e d : . . . the i n f o r m a t i o n I got, I probably d i d n ' t absorb i t a l l because of the way I f e l t , so I th i n k i t a l l came back to me, s o r t of, but i t took a w h i l e . Another woman s t a t e d : I f I wanted to know something, I could look i n the book, but e v e r y t h i n g seemed to come n a t u r a l , l i k e I say, i t was the l e a s t of my problems at the time, the i n c i s i o n a t the f r o n t and the bottom weren't bad, even when I went home, I d i d n ' t worry about d i e t . . . . Two p a r t i c i p a n t s r e f e r r e d to i n f o r m a t i o n i n terms of what had meaning f o r them, f o r example: " E v e r y t h i n g t h a t I learned I t r i e d to absorb, and run around i n my mind as to how i t was going to a f f e c t me . . . . ", and "I'm s t i l l experimenting, but I've been t h i n k i n g ahead, I'm anxious to get going". P a r t i c i p a n t s a l s o looked forward to s h a r i n g i n f o r m a t i o n . When asked i f he minded people a s k i n g q u e s t i o n s about h i s colostomy, one man r e p l i e d : I t doesn't bother me at a l l , no. In f a c t , I look forward to them a s k i n g me q u e s t i o n s , t h a t way I can t e l l them, and t h e y ' l l be more informed, and they can maybe pass i t on too. The s h a r i n g of i n f o r m a t i o n and p r o v i d i n g a s s i s t a n c e f o r o t h e r s , was d i s c u s s e d with four of the p a r t i c i p a n t s . I t appeared t h a t they were coping with the experience of having a colostomy by wanting to share t h e i r e x p e r i e n c e . The s h a r i n g of t h e i r knowledge c o u l d be d e s c r i b e d as a p o s i t i v e f o r c e f o r t h e i r need f o r r e s p e c t . They were attempting to balance the l o s s of normal bowel f u n c t i o n with the gain of the stoma, and the s k i l l s and knowledge to l i v e with the stoma. Sharing the knowledge a s s i s t e d with the process of v a l i d a t i n g the e x p e r i e n c e . Three of the p a r t i c i p a n t s found t h a t the p o s t d i s c h a r g e v i s i t s to t h e i r surgeons gave them the o p p o r t u n i t y to o b t a i n Information on o u t s t a n d i n g concerns or p h y s i c a l problems, and to ask q u e s t i o n s 77 about the surgery. One man e x p l a i n e d : I went to see him [the surgeon] yesterday, and asked him a bunch of q u e s t i o n s t h a t were b o t h e r i n g me, l i k e the muscle i n my buttock, i t ' s s o r e , and the r e c t a l area, where they sewed up my anus , . . he [the surgeon] s a i d " I t ' s going to take a couple of months u n t i l e v e r y t h i n g gets s t r a i g h t e n e d around", and then he asks me "Is there anything e l s e you want to know?". Time was nothing to him. T y p i c a l questions were "How am I doing now?", "What i s my p r o g n o s i s ? " , and "What's i t going to be l i k e f o r the r e s t of my l i f e ? " . T h i s man's response was t y p i c a l : . . . I don't think I was worried about the r e s t [care of the colostomy], but i t ' s how I was doing, and how the cancer was, whether I had to go f o r treatment, f o r r a d i a t i o n treatment, or not. Timing of the i n f o r m a t i o n was not p e r c e i v e d to be an i s s u e f o r p a r t i c i p a n t s , with the e x c e p t i o n of i n f o r m a t i o n r e g a r d i n g the extent of the surgery. As d e s c r i b e d e a r l i e r , one woman was saddened and angry over the lack of i n f o r m a t i o n about the extent of her surgery. Of the two others who i d e n t i f i e d inadequate i n f o r m a t i o n r e g a r d i n g t h e i r surgery, one had obtained i n f o r m a t i o n from another source, and the other r e c e i v e d more i n f o r m a t i o n d u r i n g the follow-up v i s i t with h i s surgeon. 78 Unmet Learning Needs The preceding information on adequacy of information a s s i s t s in id e n t i f y i n g areas where participants believed needs were not met. Surgical procedure Information needs about the surgical procedure, how the procedure was done, the extent of the surgery, number of i n c i s i o n s , location of in c i s i o n s , and the location of the stoma, were unmet for three par t i c i p a n t s . Diet Two participants were to l d to eat anything they l i k e d . One woman believed that as a resul t of the information she ate food that caused a blockage of her colostomy and resulted in readmission to hos p i t a l . The other woman believed that she did overeat as a result of the information. She believed that the constipation and cramps which occurred for three days postdischarge were a resu l t of the information. During those three days she described herself as anxious and unable to cope. The part i c i p a n t s ' perception that their learning needs regarding diet went unmet was a negative force 79 on t h e i r a b i l i t y to manage t h e i r d i e t and r e g u l a t e t h e i r bowel movements. Use of a l c o h o l Four p a r t i c i p a n t s had a h i s t o r y of s i g n i f i c a n t a l c o h o l i n t a k e . Two of the p a r t i c i p a n t s acknowledged that t h e i r d r i n k i n g had become a problem f o r them. Only one p a r t i c i p a n t had a l c o h o l intake d i s c u s s e d with him. Two were l i m i t i n g t h e i r i n t a k e , but had not been t o l d to do so, and one had wine with h i s meals, but s t a t e d t h a t he had l o s t h i s t a s t e f o r i t . Impact of l i f e s t y l e One woman b e l i e v e d t h a t the i n d i v i d u a l ' s l i f e s t y l e should d i r e c t the i n f o r m a t i o n p r o v i d e d . She d e s c r i b e d i n f o r m a t i o n needs i n r e l a t i o n to her r o l e s as mother and w i f e , as w e l l as her e x p e c t a t i o n s of resuming s p o r t s a c t i v i t i e s . She d e s c r i b e d the f o l l o w i n g i n f o r m a t i o n needs. P r i o r to s u r g e r y she was used to having a bath with her t h r e e - y e a r - o l d daughter about three times a week. She wasn't concerned about her daughter s e e i n g the stoma, but because her daughter was being t o i l e t t r a i n e d , d i d n ' t want to confuse her about where bowel movements came from. She sought out i n f o r m a t i o n about c h i l d c a r e , and was put i n touch with another young mother. She learned not to pick up her daughter, s i n c e the 8 0 p o t e n t i a l f o r h e r n i a t i n g her stoma was high. She d i s c u s s e d sex with the other young mother. She wanted to know what she and her husband could and co u l d n ' t do. She learned about making love with a bag on and the a v a i l a b i l i t y of "lovemaking pouches". She d e s c r i b e d h e r s e l f as p h y s i c a l l y a c t i v e , and asked her doctor when she cou l d s k i , hike and swim. Since she had a l r e a d y had the experience of chemotherapy, she wanted to know s p e c i f i c a l l y what drugs would be used and what s i d e e f f e c t s to expect. Of the e i g h t study p a r t i c i p a n t s , t h i s was the o n l y person who had d e f i n i t i v e i n f o r m a t i o n of a t e r m i n a l p r o g n o s i s . The medical treatment plans were p a l l i a t i v e o n l y . T h i s could have i n f l u e n c e d her pe r c e p t i o n s of the u s e f u l n e s s of the f o l l o w i n g i d e n t i f i e d i n f o r m a t i o n needs: 1 : The need f o r more i n f o r m a t i o n on n o n t r a d i t i o n a l therapy f o r cancer p a t i e n t s , such as d i e t therapy ( m a c r o b i o t i c s ) . 2: Group therapy, such as "HOPE", and the s e r v i c e s of p s y c h o l o g i s t s a s s o c i a t e d with the group. 3: Laugh therapy and p o s i t i v e imaging. T h i s woman i d e n t i f i e d a need to c o n t r o l s i t u a t i o n s , and i d e n t i f i e d t h a t others b e l i e v e d she needed to be " i n c o n t r o l " . She d e s c r i b e d her f e e l i n g s 81 when she was given her prognosis — t h i s took e v e r y t h i n g away from her, and t h a t her l i f e no longer belonged to her. She s t a t e d t h a t a way of coping was to o b t a i n as much i n f o r m a t i o n as she could about a l t e r n a t e methods of "cure", and that she wanted to put h e r s e l f i n the best p h y s i c a l and mental c o n d i t i o n p o s s i b l e f o r t h i s "cure" to occur. She s t a t e d t h a t she had not giv e n up hope. The Importance of Support Systems A s i g n i f i c a n t f a c t o r i d e n t i f i e d by seven of the e i g h t p a r t i c i p a n t s r e l a t e d to the importance of having a s i g n i f i c a n t other a v a i l a b l e a t the time of d i s c h a r g e from h o s p i t a l . T h i s may have been s i g n i f i c a n t f o r the ei g h t h person as w e l l , although he d i d n ' t express t h i s as a s p e c i f i c need. He was making plans to t r a v e l to v i s i t a c l o s e f r i e n d i n Europe. He d e s c r i b e d h i m s e l f as "not r e a l l y a mi s o g y n i s t " , but admitted to having few c l o s e f r i e n d s i n t h i s country, e i t h e r female or male. His t r i p to Europe was being f i t t e d i n between dis c h a r g e from h o s p i t a l and the beginning of h i s r a d i a t i o n treatments. D e s c r i p t i o n s of the l o v i n g and h e l p i n g r e l a t i o n s h i p s i n d i c a t e d t h a t they were a p o s i t i v e 82 fo r c e which c o n t r i b u t e d to coping with l i f e with a colostomy. One p a r t i c i p a n t s a i d "My wife i s one hundred percent behind me, so there i s no'problem t h a t way", and, l a t e r i n the i n t e r v i e w , when d i s c u s s i n g the support g i v e n by h i s wife, added "I can't say enough about t h a t , I probably take i t f o r granted". Another p a r t i c i p a n t , i n d i s c u s s i n g h i s r e l a t i o n s h i p with h i s wi f e , s a i d " I t ' s good, no s t r e s s , comfortable, s u p p o r t i v e . I hope i t s t a y s t h i s way. We're good t o g e t h e r " . One woman, who l i v e s with her daughter and g r a n d c h i l d r e n , s a i d t h a t "Things have been so much b e t t e r than I thought they would be, so i t ' s r e a l l y n i c e f o r me. My f a m i l y ' s been e x c e l l e n t , j u s t e x c e l l e n t , and th a t makes a l l the d i f f e r e n c e i n the world". Another woman s t a t e d t h a t the love and acceptance of her f a m i l y was the most important t h i n g f o r her. These statements suggest t h a t l o v e , c a r i n g , and support from s i g n i f i c a n t others are p o s i t i v e f o r c e s which promote coping s t r a t e g i e s f o r t h i s group. These a t t i t u d e s promote f e e l i n g s of belonging and a s s i s t i n g e t t i n g back to normal r o l e s of wife, husband, worker, t r a v e l companion, mother, and l o v e r . 83 In summary, i n t h i s chapter the r e s e a r c h e r has i d e n t i f i e d knowledge and s k i l l s t h a t colostomy p a t i e n t s b e l i e v e are important i n order to cope with t h e i r new colostomy. Common concerns of these colostomy p a t i e n t s , such as p a i n , f a t i g u e , problems with s l e e p , and the d i a g n o s i s of cancer were r e p o r t e d . The support of f a m i l y and f r i e n d s , and the importance of t a l k i n g with those who l i v e s u c c e s s f u l l y with a colostomy, were themes i d e n t i f i e d by p a r t i c i p a n t s . 84 Chapter F i v e Summary, C o n c l u s i o n s , I m p l i c a t i o n s , and Recommendations Summary The c r e a t i o n of a permanent colostomy has i m p l i c a t i o n s f o r the p h y s i c a l and p s y c h o s o c i a l w e l l b e i n g of the i n d i v i d u a l . Studies reviewed have suggested t h a t e f f e c t i v e p a t i e n t t e a c h i n g i s a way of a s s i s t i n g i n d i v i d u a l s to develop coping s t r a t e g i e s to manage the p h y s i c a l changes i n the body and pa t t e r n s of s o c i a l and emotional i n t e r a c t i o n ( B a i l e y , 1987; Cole & P e r r e a u l t , 1985; Dobkin & Broadwell, 1986; F o l l i c k , Smith & Turk, 1984; Jackson, 1976; M i t c h e l l , 1980; Watson, 1985). Data were c o l l e c t e d and analyzed to i d e n t i f y the l e a r n i n g needs and resource u t i l i z a t i o n of p a t i e n t s with a newly c r e a t e d permanent colostomy from t h e i r p e r s p e c t i v e . P a t i e n t i n t e r v i e w s were conducted with e i g h t p a r t i c i p a n t s ten to twenty-one days p o s t d i s c h a r g e from h o s p i t a l , u s i n g a s e m i s t r u c t u r e d i n t e r v i e w guide developed by the r e s e a r c h e r . F i n d i n g s of the study suggested that p a r t i c i p a n t s were able t o s e l f - d e f i n e the knowledge and s k i l l s t h a t 85 allowed them to develop p o s i t i v e coping behaviors to manage t h e i r newly c r e a t e d permanent colostomy. Themes which emerged from the data c o l l e c t e d were the need to get on with l i f e , the persons' need to t e l l " t h e i r s t o r y " to r e i n f o r c e t h e i r i n d i v i d u a l i t y , and the need to develop mastery over the p h y s i c a l aspects of stoma c a r e . Need to get on with l i f e . Although the f i n d i n g s suggested t h a t d i a g n o s i s , p r o g n o s i s , and mastery over p h y s i c a l care were Important l e a r n i n g needs of these s u b j e c t s , there was an i d e n t i f i e d need to know i n f o r m a t i o n that would al l o w them to continue to be the person they were before s u r g e r y . Role i d e n t i f i c a t i o n , and l e a r n i n g needs i n r e l a t i o n to t h a t r o l e , were d e s c r i b e d by a l l p a r t i c i p a n t s . I r r e s p e c t i v e of prog n o s i s , the resumption of t h e i r l i f e r o l e had value f o r the p a r t i c i p a n t s . L i f e e x p e c t a t i o n s were i d e n t i f i e d i n r e l a t i o n to t h e i r r o l e s , and i n c l u d e d : the r o l e of wif e , mother, l o v e r , and f r i e n d ; the r o l e of husband, son, and wage earner; the r o l e of mother, grandmother, and amateur a r t i s t . F i v e p a r t i c i p a n t s i d e n t i f i e d l e a r n i n g needs i n r e l a t i o n to t r a v e l f o r r e c r e a t i o n 86 and to a l l o w them to be near good f r i e n d s . A l l p a r t i c i p a n t s found t h a t pain and f a t i g u e were major i n h i b i t o r s i n r e l a t i o n to resumption of r o l e , and i d e n t i f i e d the need to be b e t t e r informed about the impact of pain and f a t i g u e on t h e i r l i f e s t y l e . The s i g n i f i c a n c e of s u p p o r t i v e f a m i l y and f r i e n d s was d e s c r i b e d by a l l p a r t i c i p a n t s . Support was provided through p h y s i c a l comfort such as a s s i s t a n c e with d r e s s i n g changes and colostomy care (n = 2), emotional support (n = 7), and p r o v i s i o n of i n f o r m a t i o n on l i v i n g with a colostomy (n = 5). Need to t e l l t h e i r s t o r y . P a r t i c i p a n t s d e s c r i b e d t h e i r l i f e s t y l e and the impact of t h a t l i f e s t y l e on t h e i r l e a r n i n g needs. T h i s d e s c r i p t i o n occurred near, or a t , the beginning of the i n t e r v i e w , i n response to the q u e s t i o n " W i l l you share with me what i t has been l i k e f o r you to have a colostomy?" A l l p a r t i c i p a n t s d e s c r i b e d what was going on i n t h e i r l i v e s p r i o r to surgery. In t h a t d e s c r i p t i o n , they i n c l u d e d other h e a l t h problems (n = 2), the h e a l t h problems of a spouse (n = 2), the kind of people they were, and t h e i r s o c i a l and r e c r e a t i o n a l e x p e c t a t i o n s (n = 4). Of the four who 87 d i s c u s s e d t h e i r a l c o h o l i n t a k e , o n l y one r e c e i v e d any c o u n s e l l i n g f o r the problem while i n h o s p i t a l . Three p a r t i c i p a n t s d e s c r i b e d problems r e l a t e d to e x c e s s i v e use of a l c o h o l i n the past, and how they were p l a n n i n g to d e a l with t h i s p e r c e i v e d problem. T h i s need of the p a r t i c i p a n t s to i d e n t i f y to the res e a r c h e r who they were and what t h e i r l i f e was about, suggested that each was t r y i n g to i d e n t i f y the uniqueness of t h e i r s i t u a t i o n , t h e i r l i f e s t y l e , and t h e i r support systems, and t h e r e f o r e what they were going to need to know to get back "to normal". Need f o r mastery over p h y s i c a l care of the stoma. A l l p a r t i c i p a n t s i d e n t i f i e d the need to have i n f o r m a t i o n r e l a t i n g to the p h y s i c a l care of the stoma. Information needs i n c l u d e d care of the stoma, care of the p e r i n e a l wound, d i e t , e l i m i n a t i o n p a t t e r n s and the use of l a x a t i v e s , and hygiene. Seven of the p a r t i c i p a n t s were c a r i n g f o r t h e i r stomas a t the time of i n t e r v i e w . The e i g h t h p a r t i c i p a n t s t a t e d t h a t he knew how to do the care, but p s y c h o l o g i c a l l y was unable to c a r r y out the p h y s i c a l care of h i s stoma a t tha t p o i n t . A l l e i g h t p a r t i c i p a n t s who had care provided by home care nurses at some time during the period between discharge from hospital and the interview, perceived that the home care nurse provided support, but not expertise in the care of the colostomy. Seven of the participants had either c a l l e d or gone to see the enterostomal therapist since discharge from hospital for concerns about stoma care, d i e t , and elimination problems. The enterostomal therapist was perceived to be the expert. Methodological issues. Two issues should be considered in r e l a t i o n to the study. F i r s t , the approach to the surgical intervention for low bowel tumors has changed r a d i c a l l y during the l a s t two years. The sur g i c a l intervention described by Gordon and Dalrymple (1987) results in fewer permanent colostomies, which is c l e a r l y advantageous to persons with lower bowel tumors. The survival rate has not been reduced (Gordon & Dalrymple, 1987, Heald & Chir, 1987). It did, however, l i m i t the a v a i l a b i l i t y of study par t i c i p a n t s . Of those who met the c r i t e r i a for the study, over the six-month period of data c o l l e c t i o n , only two were 89 not i n t e r e s t e d i n p a r t i c i p a t i n g i n the study. Those who agreed to p a r t i c i p a t e were eager to share experiences with a view to h e l p i n g others who r e q u i r e permanent c o l o s t o m i e s . The second issue r e l a t e d to the p a r t i c i p a n t s ' need to t e l l t h e i r s t o r y . Although the s e m i s t r u c t u r e d i n t e r v i e w format and i n i t i a l open-ended questions allowed t h i s d i s c l o s u r e to occur, i t was not a n t i c i p a t e d by the i n t e r v i e w e r . Since a l l p a r t i c i p a n t s f e l t the need to share t h i s type of i n f o r m a t i o n , the format f o r f u t u r e s t u d i e s should accommodate t h i s . In view of the f a t i g u e d e s c r i b e d by p a r t i c i p a n t s , c o n s i d e r a t i o n c o u l d be given to conducting two separate i n t e r v i e w s , the f i r s t e x p l o r a t o r y , the second more s p e c i f i c to the r e s e a r c h q u e s t i o n ( s ) . C o n c l u s i o n s T e c h n i c a l s k i l l s . C o n s i s t e n t with the f i n d i n g s of a study done by Watson (1983), e a r l y p o s t o p e r a t i v e c o u n s e l l i n g allowed fo r mastery over the t e c h n i c a l aspects of ostomy care for a l l but one p a r t i c i p a n t i n the present 90 study. T h i s f i n d i n g i s c o n t r a r y to the r e s u l t s of a study by Cole and P e r r e a u l t (1985), who i d e n t i f i e d t h a t p o s t o p e r a t i v e l e a r n i n g of t e c h n i c a l s k i l l s was proble m a t i c as a r e s u l t of s o c i a l and emotional concerns. Seven of the present study p a r t i c i p a n t s were coping e f f e c t i v e l y with care of the colostomy. The e i g h t h person was s t r u g g l i n g with r e s o l v i n g f e e l i n g s r e l a t e d to h i s surgery, prognosis and in f o r m a t i o n about a d j u n c t i v e therapy, and had not yet assumed care of the stoma. T h i s person i n d i c a t e d t h a t he knew how (had the c o g n i t i v e a b i l i t y ) but c o u l d not cope with the tasks i n v o l v e d i n the ca r e . S k i l l s t h a t were most r e a d i l y i d e n t i f i e d and learned were those r e l a t e d to a c t u a l care of the stoma. Knowles (1984) i d e n t i f i e d that a d u l t s become ready to l e a r n when they experience a need to know or do something, and t h a t t h i s may be r e l a t e d t o an u n a n t i c i p a t e d change i n some aspect of t h e i r l i v e s . R ecognizing t h a t the i n t e r v i e w s were done ten to twenty days p o s t d i s c h a r g e , the p h y s i c a l a c t s of c a r i n g for the stoma may have been the p a r t i c i p a n t s ' way of demonstrating mastery or c o n t r o l over one aspect of the change i n t h e i r l i v e s . The r e s u l t s of the study suggest t e c h n i c a l s k i l l s are an important component of p o s t o p e r a t i v e c o u n s e l l i n g , and should be 91 included in predischarge teaching. Role of the enterostomal therapist. The r e h a b i l i t a t i o n model proposed by Jeter (1979) suggested that the health care team act in the role of friend, rather than a s t r i c t l y professional r o l e . The concept of a friendship described by Jeter included cogent and careful Interviews t a i l o r e d to the patient's needs, and spending time with patients who may be fe e l i n g unloving and unloved. Those interviewed spoke with warmth and praise of the support given by the enterostomal therapists. The continuity of care provided by the enterostomal therapists was reassuring; a l l participants f e l t reassured that they could contact the enterostomal therapists at any time for advice or support. At the time of interview, seven of the participants had been in touch with the enterostomal therapists by telephone, or had gone to see them, and the eighth was planning to make contact the following week. The caring, technical expertise, and teaching aspects of the role of the enterostomal therapist was supported in the interviews. 92 Role of the physician. Results of t h i s study indicate that the participants regard the surgeon as the one who provides information on diagnosis, surgical intervention, and prognosis. This is consistent with the surgeon's role as described by Dietz (1980), Dlin, Perlman, and Ringold (1969), and Druss et a l (1969). Add i t i o n a l l y , the males in t h i s study either obtained or requested information from the surgeon about sexual functioning postsurgery. The one male who neither requested nor obtained information, indicated that he had information from a previous surgery, "a warning" was how he described i t , and that limitations had been pointed out. Female subjects did not seek information about sexual functioning from the male physicians, but from the female enterostomal therapists. Body image. Druss et a l (1969), Gloeckner (1984) and Shipes (1987), described depression, fear of s o c i a l r e j e c t i o n , sleep disturbance, and severe weakness as symptoms indicative of disturbance of body image. These symptoms were c o n s i s t e n t with those d e s c r i b e d by t h i s study's p a r t i c i p a n t s . Seven p a r t i c i p a n t s i n the study d e s c r i b e d changed s l e e p p a t t e r n s , or problems with s l e e p . Only one r e l a t e d the problem to concerns about h i s stoma (checking to see whether the pouch was i n p l a c e , and t h a t there wasn't too much gas i n the bag). Depression was openly r e f e r r e d to by two p a r t i c i p a n t s , and a l l were concerned about f a t i g u e . I m p l i c a t i o n s Although the s m a l l s i z e of the study p o p u l a t i o n g i v e s r i s e to problems of g e n e r a l i z a t i o n , study f i n d i n g s i d e n t i f i e d p a t i e n t s ' p e r c e p t i o n s of t h e i r l e a r n i n g needs, and how these needs were met by the enterostomal t h e r a p i s t and the p h y s i c i a n . Nursing p r a c t i c e . F i n d i n g s of t h i s study suggest t h a t there be ongoing c o n s u l t a t i o n with the enterostomal t h e r a p i s t . A s u p p o r t i v e r e l a t i o n s h i p had been e s t a b l i s h e d , as evidenced by the way p a r t i c i p a n t s spoke of the enterostomal t h e r a p i s t s , and by the way t h e i r a d v i c e was sought p o s t d i s c h a r g e . P a r t i c i p a n t s were impressed by the knowledge of the enterostomal t h e r a p i s t s concerning stoma c a r e , and the support and c o n t i n u i t y of care provided to them by the enterostomal t h e r a p i s t s while i n h o s p i t a l . Questions about stoma care posed to the surgeons were d e f l e c t e d back to the stoma t h e r a p i s t s , as they were c o n s i d e r e d the experts i n stoma c a r e . H o s p i t a l nurses who provided ongoing care to p a r t i c i p a n t s d u r i n g h o s p i t a l i z a t i o n were p e r c e i v e d to have l i m i t e d knowledge and e x p e r t i s e about stoma ca r e . The home care nurses were p e r c e i v e d to be s u p p o r t i v e , r e i n f o r c i n g l e a r n i n g t h a t had occurred d u r i n g h o s p i t a l i z a t i o n , but not p a r t i c u l a r l y knowledgeable about care requirements. P a r t i c i p a n t s acknowledged t h a t the p h y s i c i a n (surgeon) i s the p r e f e r r e d source of i n f o r m a t i o n about d i a g n o s i s , s u r g i c a l i n t e r v e n t i o n , and p r o g n o s i s . In l i g h t of the i n f o r m a t i o n needs and sources of i n f o r m a t i o n I d e n t i f i e d by t h i s study, i t seems reasonable to suggest t h a t the enterostomal t h e r a p i s t be the c o o r d i n a t o r of care f o r the p a t i e n t undergoing surgery f o r permanent colostomy, to ensure c o o r d i n a t i o n of p r e o p e r a t i v e c o u n s e l l i n g by the surgeon, p o s t o p e r a t i v e t e a c h i n g , and ongoing r e h a b i l i t a t i o n r e l a t i n g to p h y s i c a l and p s y c h o s o c i a l 95 needs. A d e t a i l e d p a t i e n t h i s t o r y , t h a t would a l l o w p a t i e n t s to t e l l t h e i r s t o r y , would provide i n f o r m a t i o n about past and present coping behaviors and a v a i l a b l e support systems. T h i s knowledge, i f used by the h o s p i t a l nurses p r o v i d i n g ongoing c a r e , would g i v e d i r e c t i o n to i n t e r v e n t i o n s to support the i n d i v i d u a l through t h i s l i f e c r i s i s . The r o l e of the enterostomal t h e r a p i s t , as c o o r d i n a t o r of ca r e , should not stop at d i s c h a r g e from h o s p i t a l , but should i n c l u d e d i r e c t i o n to the home care nurse, as w e l l as r e f e r r a l s to the home care v i s i t o r s from the Ostomy A s s o c i a t i o n . Nursing e d u c a t i o n . The c o o r d i n a t o r r o l e suggested f o r the enterostomal t h e r a p i s t r e q u i r e s a nurse with s p e c i a l i s t p r e p a r a t i o n . The r o l e envisaged f o r the enterostomal t h e r a p i s t i s s i m i l a r to t h a t of the c l i n i c a l nurse s p e c i a l i s t (CNS). The r o l e of the CNS Includes p a t i e n t and nurse educa t i o n , c o n s u l t a t i o n and c o l l a b o r a t i o n with nurses and p h y s i c i a n s (both w i t h i n and o u t s i d e of the h o s p i t a l ) , and r e s e a r c h i n the area of c l i n i c a l s p e c i a l i z a t i o n . E d u c a t i o n a l p r e p a r a t i o n for the CNS r o l e Is a t the Masters l e v e l , with 96 c l i n i c a l s p e c i a l i z a t i o n i n t h e a r e a o£ i n t e r e s t . T h i s p r e p a r a t i o n p r o v i d e s n e e d e d k n o w l e d g e i n t h e a r e a s o f r e q u i r e d r e h a b i l i t a t i o n f o r t h e c o l o s t o m y p a t i e n t , s u c h a s m a s t e r y o f p h y s i c a l c a r e and i s s u e s r e l a t i n g t o s e l f - c o n c e p t , b o d y im a g e , and q u a l i t y o f l i f e . I s s u e s r a i s e d by s t u d y p a r t i c i p a n t s r e l a t e d t o t h e k n o w l e d g e l e v e l o f s t a f f n u r s e s and home c a r e n u r s e s c o u l d be a l l e v i a t e d t h r o u g h n u r s e e d u c a t i o n and c o l l a b o r a t i o n w i t h t h e c l i n i c a l s p e c i a l i s t . R e c o m m e n d a t i o n s f o r F u r t h e r R e s e a r c h B a s e d on t h e f i n d i n g s o f t h i s s t u d y , t h e f o l l o w i n g f u r t h e r r e s e a r c h i s s u g g e s t e d : 1: A l o n g i t u d i n a l s t u d y I n t e r v i e w i n g p a r t i c i p a n t s a t one m onth, s i x m o n t h s , and a f t e r one y e a r , i n o r d e r t o i d e n t i f y o n g o i n g p e r c e p t i o n s o f l e a r n i n g n e e d s and how t h e y were met. 2: R e i n t e r v i e w t h i s s t u d y g r o u p i n one y e a r ' s t i m e t o a s s e s s t h e q u a l i t y o f s p o u s a l / f a m i l y s u p p o r t . I n t h i s s t u d y , p a r t i c i p a n t s p e r c e i v e d s u p p o r t and r e l a t i o n s h i p s t o be p o s i t i v e . D r u s s e t a l ( 1 9 6 8 ) i d e n t i f i e d t h a t t h e r e was a s i g n i f i c a n t d e t e r i o r a t i o n i n s o c i a l and f a m i l y r e l a t i o n s h i p s d u r i n g t h e f i r s t y e a r a f t e r 97 s u r g e r y . Are the p e r c e p t i o n s of the study group v a l i d , or could the b r i e f p e r i o d between d i s c h a r g e from h o s p i t a l and i n t e r v i e w be considered a "honeymoon period"? 3: I d e n t i f y the p e r c e p t i o n of p h y s i c i a n s , s t a f f nurses, and home care nurses, of the r o l e of the enterostomal t h e r a p i s t i n the care and t e a c h i n g of p a t i e n t s with stomas. 98 References Ammon-Gaberson, K.B. (1987) . Adult l e a r n i n g p r i n c i p l e s . American J o u r n a l of Nursing, 45.(4), 961-963. Anderson, R.M. (1986) . K i c k i n g the bucket theory. D i a b e t i c Medicine, 2 , 85 -89 . Areneth, L.M. & Mamon, J.A. (1985) . Determining p a t i e n t needs a f t e r d i s c h a r g e . Nursing Management, 1 £ ( 9 ) , 20-24 . B a i l e y , A.J. (1977) . Nursing the p a t i e n t with a colostomy. Nursing Times, 11 (3 ) , 382-385. Bordon, N., Goida, A., Kinimaka, P., Law, D., Johnson, H., & Shipes, E. (1983) . Outcome standards f o r the ostomy c l i e n t . J o u r n a l of  Enterostomal Therapy, 10.(4), 128-131. Bromley, B. (1980) . A p p l y i n g Orem's s e l f - c a r e t h e o r y i n enterostomal therapy. American J o u r n a l of  Nursing, £, 245-249. Brundage, D.H. (1980) . Adult l e a r n i n g p r i n c i p l e s and  t h e i r a p p l i c a t i o n to program p l a n n i n g . M i n i s t r y of Ed u c a t i o n , O n t a r i o , C a t a l o g u i n g i n p u b l i c a t i o n d a ta. (Research P r o j e c t ) Campbell, M., (1987) . UBC Nursing Model. Vancouver: U n i v e r s i t y of B r i t i s h Columbia, School of Nursing. Casey, E. & O'Connell, J.K. (1984) . P e r c e p t i o n s of e d u c a t i o n a l needs f o r p a t i e n t s a f t e r myocardial i n f a r c t i o n . P a t i e n t E d u c a t i o n & C o u n s e l l i n g , 6 ( 2 ) , 77-82 . C l a r k e , K. (1982) . P a t i e n t h e a l t h t e a c h i n g needs. J o u r n a l of Emergency Nursing, 8 J 6 ) , 298-303. Cole, J.P. & P e r r e a u l t , J.A. (1985) . A m u l t i d i s c i p l i n a r y approach to s e r v i c e s f o r enterostomy p a t i e n t s . J o u r n a l of Enterostomal  Therapy. 12 (2 ) , 49-54. 99 Coogan-Bland, J . & T o l i n s , S.H. (1979). The n u r s i n g  student's guide to surgery. Boston: L i t t l e Brown, pp. 281-286. D i e t z , J.H. (1980). Adaptive r e h a b i l i t a t i o n i n cancer. Postgraduate Medicine. Cancer  R e h a b i l i t a t i o n , 68(1)/ 145-153. D l i n , B.M., Perlman, A. & R i n g o l d , E. (1969). P s y c h o s o c i a l response to ileostomy and colostomy. American J o u r n a l of P s y c h i a t r y , 126(3), 374-381. Dobkin, A.K. & Broadwell, D.C. (1986). Nursing c o n s i d e r a t i o n s f o r the p a t i e n t undergoing colostomy s u r g e r y . Seminars i n Oncology Nursing, 2.(4), 249-255. Doering, K.J., & La Mountain, P. (1984). Ostomy p a t i e n t s : Recuperative c a r e . Nursing '84, 14_(H), 54-57. Doering, K.J., & La Mountain, P. (1984). Ostomy p a t i e n t s : Discharge outcome assessment. Nursing 84. 11(12), 47-49. Doughty, D.B. (1986). C o l o r e c t a l cancer: E t i o l o g y & pathophysiology. Seminars i n Oncology Nursing, 2(4), 234-241. Druss, R.G., O'Connor, J.F., & S t e r n , L.O. (1968). P s y c h o l o g i c response to colectomy (Part One). A r c h i v e s of General P s y c h i a t r y , 18., 53-59. Druss, R.G., O'Connor, J.F., & Ste r n , L.O. (1969). P s y c h o l o g i c response t o colectomy (Part Two). A r c h i v e s of General P s y c h i a t r y , 20, 419-427. E l l i s , H. (1987). Abdominoperineal R e s e c t i o n . In s . l . Schwartz & H. E l l i s (Eds.), Maingol's  abdominal o p e r a t i o n s (8th ed.), (pp. 1409-1522). Norwalk, CN: Appleton, Century C r o f t s . F o l l i c k , M.J., Smith, T.W., & Turk, D.C. (1984). P s y c h o s o c i a l adjustment f o l l o w i n g ostomy. Health  Psychology, 2 ( 6 ) , 505-517. Fox, V. (1986). P a t i e n t t e a c h i n g . American Operating  Room Nurses' J o u r n a l . 4J.( 2 ), 234-242 . 100 Gloeckner, M.R., (1984). P e r c e p t i o n s of sexual a t t r a c t i v e n e s s f o l l o w i n g ostomy surgery. Research i n Nursing and Health, 2(2), 87-92. Gordon, P.H., & Dalrymple, S. (1987). The use of s t a p l e s f o r r e c o n s t r u c t i o n a f t e r c o l o n i c & r e c t a l s u r g e r y . In M.M. R a v i t c h & F.M. Ste i c h e n (Eds.), P r i n c i p l e s & p r a c t i c e of s u r g i c a l s t a p l i n g (pp. 402-431). Chicago: Year Book Medical P u b l i s h e r s . Heald, R.J., & C h i r , M. (1987). Low s t a p l e d anastomosis. In M.M. R a v i t c h & F.M. St e i c h e n (Eds.), P r i n c i p l e s & p r a c t i c e of s u r g i c a l s t a p l i n g (pp. 499 - 510). Chicago: Year Book Medical P u b l i s h e r s . Hopp, J.W. & H i l l s , R. (1985). Determining p a t i e n t e d u c a t i o n needs. R e s p i r a t o r y Therapy. 15.(6), 39-44. Jackson, B.S. (1976). Colostomates 1 r e a c t i o n s to h o s p i t a l i z a t i o n & colostomy surgery. Nursing  C l i n i c s of North America, 11(3), 417-425. Jackson, B.J., & Broadwell, D.C. (1986). Ostomy surgery: An overview of h i s t o r i c a l , c u r r e n t and f u t u r e p e r s p e c t i v e s . Seminars i n Oncology Nursing. 2(4), 227-234. J e t e r , K.F. (1979). A r e a l i s t i c approach to enterostomy r e h a b i l i t a t i o n . Nursing Forum, 17(1), 72-87. K a r l i k , B.A., & Y a r c h e s k i , A. (1987). Learning needs of c a r d i a c p a t i e n t s . Heart & Lung, 16.(5), 544-551. K e l t i k a n g a s - J a r v i n e n , L., Loven, E., & M o l l e r , C. (1984). P s y c h i c f a c t o r s determining the long term a d a p t a t i o n of colostomy & ileostomy p a t i e n t s . Psychotherapy Psychosomatics, 41, 153-159. Kisner Berg, B., E c k h o f f - B i a g i , P., Hebert, P., R o d e l l , D., & S p r a f k i n , R. (1987). P a t i e n t e d u c a t i o n needs assessment: C o n s t r u c t i n g a g e n e r i c guide. P a t i e n t Education C o u n s e l l i n g . 9_(2), 199-207. Knowles, M.S. (1973). The a d u l t l e a r n e r : h, n e g l e c t e d s p e c i e s . Houston: Gulf P u b l i s h i n g . 101 Knowles, M.S. (1984). Andragogy i n a c t i o n . London: Josey Bass P u b l i s h e r s . Lauer, P., Murphy, S.P., & Powers, M.J. (1982). L e a r n i n g needs of cancer p a t i e n t s : A comparison of nurse and p a t i e n t p e r c e p t i o n s . Nursing Research, 11(1), 11-16. Lee, J.M. (1970). Emotional r e a c t i o n s to trauma. Nursing C l i n i c s of North America, 5 . (4 ) , 577-587. McHatton, M. (1985). A theory f o r t i m e l y t e a c h i n g . American J o u r n a l of Nursing, 15.(7), 798-804. Megenity, J.S. (1982). P a t i e n t t e a c h i n g : T h e o r i e s ,  techniques & s t r a t e g i e s . Bowie, MD: P r e n t i c e H a l l . M i t c h e l l , A. (1980). P a t i e n t s ' views on stoma c a r e . Nursing M i r r o r . 150(21). 38-41. Motta, G.J. (1987). L i f e span changes: I m p l i c a t i o n s f o r ostomy c a r e . Nursing C l i n i c s of North America, 22(2), 333-339. O'Connell, M.J., Gunderson, L.L., & Fleming, T.R. (1988). S u r g i c a l adjuvant therapy of r e c t a l cancer. Seminars i n Oncology, 15.(2), 138-145. Prudden, J.F. (1971). P s y c h o l o g i c a l problems f o l l o w i n g ileostomy & colostomy. Cancer, 28, 236-238. Redman, B.K. (1984). The process of p a t i e n t  e d u c a t i o n . St. L o u i s , MO: C. V. Mosby. Roberts, S.L. (1978). B e h a v i o r a l concepts & n u r s i n g  throughout the l i f e s p a n . Englewood C l i f f s , NJ: P r e n t i c e H a l l . Rogers, C.R. (1951). C l i e n t - c e n t e r e d therapy: I t s c u r r e n t p r a c t i c e , i m p l i c a t i o n s & theory. New York: Houghton M i f f l i n . Shipes, E. (1987). P s y c h o s o c i a l i s s u e s : The person with an ostomy. Nursing C l i n i c s of North America, 22.(2), 291-302. 102 Thielman, D.G. (1983). Patient teaching guidelines. Journal of Enterostomal Therapy, 10_(5), 166-168. Waters, J.O. (1987). Learning needs of spinal cord injured patients. Rehabilitation Nursing, 12(6), 309-312. Watson, P.G. (1983). The ef f e c t s of short term postoperative counselling on cancer/ostomy patients. Cancer Nursing, 2_, 21-28. Watson, P.G. (1985). Meeting the needs of patients undergoing ostomy surgery. Journal of Enterostomal  Therapy. 12(4), 121-124. Watson, P.M. (1982). Patient education: The adult with cancer. Nursing C l i n i c s of North America. 17(4), 739-752. 103 APPENDIX I Dukes' C l a s s i f i c a t i o n of Large Bowel Cancers was done according to the spread of the tumor in the s u r g i c a l l y resected specimen: 1: A Cases — those in which the carcinoma i s limited to the wall of the rectum, no extension into the extra-rectal tissues, and no metastases in the lymph nodes. 2: B Cases -- those in which the carcinoma has spread by d i r e c t continuity to the extra-rectal tissues, but has not yet invaded the regional lymph nodes. 3: C Cases — those in which metastases are present in regional lymph nodes. The c l a s s i f i c a t i o n i s based on,the proved depth of malignant spread requiring microscopic confirmation. E l l i s , H. (1987). p. 1459. 104 APPENDIX II Comparison of Pedagogical and Andragogical Teaching Styles Assumptions Concept of the learner Role of learner 1s experience Readiness to learn Orientation to learning Motivation Climate Processes Planning, i d e n t i f y i n g needs, set t i n g goals, and evaluating learning Designing a learning plan Learning a c t i v i t i e s Pedagogical Teacher-directed dependent personality to be b u i l t on more than used dictated by curriculum subject centred external rewards and punishments formal, authoritarian, competitive, judgemental primarily by nurse content units, course syllabus arranged l o g i c a l l y transmittal techniques, assigned readings Andragogical Self-directed s e l f - d i r e c t e d person a r i c h learning resource develops from l i f e tasks and problems task or problem centred internal incentives and c u r i o s i t y informal, mutually respectful, consensual, collaborative, supportive by mutual agreement learning projects, content arranged in terms of readiness inquiry projects, independent study, exper i e n t i a l techniques Fox, V. (1986). p. 236 105 APPENDIX III The UBC Nursing Model Need and Goal of Each Subsystem Subsystem Need Goal Achieving For mastery Feelings of accomplishment; s a t i s f a c t i o n with accomplishments Affective Ego-valuative Excretory Ingestive Protective Reparative Respiratory Satiative For love, belonglngness and dependence For respect of s e l f by s e l f and others For c o l l e c t i o n and removal of accumulated wastes For intake of food and f l u i d ; nourishment For safety and security For balance between production and u t i l i z a t i o n of energy For intake of oxygen For stimulation of the system's senses ( i . e . , hearing, v i s i o n , smell, touch, and taste) Feelings of love, belonglngness and and dependence Self-esteem Absence of accumulated wastes Nourishment; s a t i s f a c t i o n of hunger and t h i r s t Integrity of the system Capacity for a c t i v i t y Oxygenation; easy re s p i r a t i o n Sensory s a t i s f a c t i o n Campbell, M., (1987), p. 38 106 A P P E N D I X I V I n f o r m a t i o n L e t t e r t o P a r t i c i p a n t s P a t i e n t s who have r e c e n t l y had s u r g e r y t o c r e a t e a c o l o s t o m y a r e b e i n g asked t o p a r t i c i p a t e i n a r e s e a r c h s t u d y . Would you be w i l l i n g t o h e l p us f i n d out what p a t i e n t s w i t h new c o l o s t o m i e s need t o l e a r n ? Mrs. G a i l K e i r s t e a d , a r e g i s t e r e d nurse a t Shaughnessy H o s p i t a l and a s t u d e n t i n the Mas t e r s Program a t u.B.C. i s c o n d u c t i n g t h e s t u d y . I f you a r e w i l l i n g t o p a r t i c i p a t e , t h i s i s what you can e x p e c t : An i n t e r v i e w conducted i n your home by Mrs. K e i r s t e a d a t a time c o n v e n i e n t t o you. The i n t e r v i e w would l a s t one hour and t a k e p l a c e two weeks a f t e r your d i s c h a r g e . You- w i l l be t e l e p h o n e d f o r a c o n v e n i e n t t i m e . A tape r e c o r d e r w i l l be used. At any p o i n t i n t h e i n t e r v i e w you may i n d i c a t e you want the tape t u r n e d o f f or a p o r t i o n of the tape e r a s e d . Complete c o n f i d e n t i a l i t y w i l l be ob s e r v e d . Your name w i l l not be used on the tape or the i n t e r v i e w n o t e s . A l l these materials w i l l be destroyed at the end of the project. You w i l l have the opportunity to ask Mrs. Keirstead questions at the end of the interview and she w i l l a s s i s t you with your concerns. You have the right to refuse to parti c i p a t e or withdraw from the study. Your decision w i l l in no way a f f e c t your present or future medical or nursing care. If you are w i l l i n g to parti c i p a t e please l e t the nurse know and Mrs. Keirstead w i l l contact you prior to discharge to provide any additional information, answer your questions and obtain your consent. Thank you for your interest in th i s project. 108 APPENDIX V Consent Form for Research Study Stoma Patients' I d e n t i f i c a t i o n of Learning Needs in the Early Rehabilitation Period I agree to take part In a study whose purpose is to i d e n t i f y the learning needs and resource u t i l i z a t i o n of stoma patients. The nature, demands and benefits of the study have been explained to me. I understand that I may ask questions and that I am free to withdraw from the study at any time without i t af f e c t i n g my future medical or nursing care. I agree that Ga i l Keirstead may v i s i t my home to interview me. I understand that the interview w i l l be tape recorded and the tapes w i l l be erased when the study is completed. I also give permission to Gail Keirstead to read my hospital chart to obtain background information for the study. A l l my questions about the study have been answered by Gail Keirstead. I have received a copy of the l e t t e r of information and the consent form. Date , Subject's signature Date Witness' signature APPENDIX VI Chart Review and Interview Guide Demographics: Collected from patient record. 1: Telephone number 2: Address 3: Chart number 4: Doctor (Name) 5: Age in years 6: Sex M 7: Ethnic o r i g i n 8: Living arrangements 9: Date of surgery 10: Medical reason for surgery 11: El e c t i v e 12: Emergency 13: Type and location of colostomy 14: 15: Complications: Infection Yes Other Health Problems: No Other 110 INTERVIEW GUIDE Home V i s i t : People who have had surgery similar to yours have many d i f f e r e n t feelings. W i l l you share with me what i t has been l i k e for you to have a colostomy? In the two weeks since you've been home from hospital have you needed to make changes in you d a l l y a c t i v i t i e s as a re s u l t of your stoma? After the general response s p e c i f i c areas of potential problems w i l l be explored. 21.A On a scale of 1 to 10, where 10 = very confident, and 1 = not very confident, how would you rate your present feelings of confidence regarding the care of your stoma? 1 10 # What factors influenced you to select # I l l Subjects w i l l then be asked to d e s c r i b e how they manage: 22.A The stoma: Problems encountered: f e a r of to u c h i n g stoma s e n s i t i v i t y of s k i n around stoma _ _ _ _ _ s k i n breakdown Other 23.A The number and type of bowel movements: Problems encountered: d i a r r h e a c o n s t i p a t i o n frequency Other 24.A T h e i r d i e t : Problems encountered: food p r e p a r a t i o n a p p e t i t e e f f e c t of food on bowel movements pr o d u c t i o n of gas blockage of stoma as a r e s u l t of d i e t Other A A c t i v i t i e s of d a i l y l i v i n g : Problems encountered: lack of energy d i s c o m f o r t i n t e r e s t i n ADL Other A Sleep and r e s t : Problems encountered: s l e e p h a b i t s changed fear of bag coming o f f s l e e p s i n d i f f e r e n t l o c a t i o n than spouse Other A R e l a t i o n s h i p s with f a m i l y : Problems encountered: f e e l i n g of a l i e n a t i o n r e l a t e d to stoma emotional • p h y s i c a l r e l u c t a n c e to leave home Other .A Outside the home: Problems encountered: have not gone o u t s i d e home s i n c e d i s c h a r g e from h o s p i t a l fear of embarrassing a c c i d e n t s too uncomfortable too weak Other 114 When p a t i e n t s have your type of surgery, they o f t e n r e c e i v e l o t s of i n f o r m a t i o n . I would l i k e t o get an idea of what i n f o r m a t i o n you r e c e i v e d , who gave i t and when, and how i t helped or d i d n ' t h e l p . Coding as f o l l o w s 21.B Care of stoma: Information given yes no Adequate yes no Given by ET nurse DR other Timing of i n f o r m a t i o n : d u r i n g h o s p i t a l i z a t i o n a f t e r d i s c h a r g e 1 - 3 days 1 week 2 weeks 22.B Skin Care: Information given yes no Adequate yes no Given by ET nurse DR other Timing of i n f o r m a t i o n : d u r i n g h o s p i t a l i z a t i o n a f t e r d i s c h a r g e 1 - 3 days 1 week 2 weeks other 23.B Bowel Movements: Information given yes no Adequate yes no Given by ET nurse DR other Timing of i n f o r m a t i o n : d u r i n g h o s p i t a l i z a t i o n a f t e r d i s c h a r g e 1 - 3 days 1 week 2 weeks B D i e t : Information given yes no Adequate yes no Given by ET nurse DR other Timing of i n f o r m a t i o n : d u r i n g h o s p i t a l i z a t i o n a f t e r d i s c h a r g e 1 - 3 days 1 week 2 weeks other B A c t i v i t i e s of d a i l y l i v i n g : I n f ormation g i v e n yes no Adequate yes no Given by ET nurse DR other Timing of i n f o r m a t i o n : d u r i n g h o s p i t a l i z a t i o n a f t e r d i s c h a r g e 1 - 3 days 1 week 2 weeks other B Sleep & r e s t : I nformation g i v e n yes no Adequate yes no Given by ET nurse DR other Timing of i n f o r m a t i o n : d u r i n g h o s p i t a l i z a t i o n a f t e r d i s c h a r g e 1 - 3 days 1 week 2 weeks other B Family r e l a t i o n s h i p s : I nformation given yes no Adequate yes no Given by ET nurse DR other Timing of i n f o r m a t i o n : d u r i n g h o s p i t a l i z a t i o n a f t e r d i s c h a r g e 1 - 3 days 1 week 2 weeks other 118 28.B Outside home: Information given Adequate Given by yes no yes no ET nurse DR other Timing of information: during h o s p i t a l i z a t i o n after discharge 1 - 3 days 1 week 2 weeks other 29. Are there other areas in which you have found you needed information or reassurance? 30. Assistance at home provided by: Spouse Family member Non-family member Health care worker 119 31. Type of a s s i s t a n c e p r o v i d e d : H e a l t h : Care of stoma or r e l a t e d care Hygiene: D i e t a r y : Home care & maintenance: S o c i a l : 32. Worked p r i o r t o surgery? Yes No 33. Occupation: P h y s i c a l O f f i c e 34. Returning to work? Yes No If no, i s the reason Related t o stoma? Yes No 

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