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Learning needs of persons on home hemodialysis Niskala, Helena 1976

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LEARNING NEEDS OF PERSONS ON HOME HEMODIALYSIS by HELENA NISKAIA B.N., McGill University, 1964 M.S., University of California, San Francisco, 1969 A DISSERTATION SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF EDUCATION in THE' FACULTY OF EDUCATION (Adult Education) We accept this dissertation as conforming ta the required standard. THE UNIVERSITY OF BRITISH COLUMBIA J u l y , 1976 © Helena N i s k a l a , 1976 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements f o r an advanced degree at the U n i v e r s i t y of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y a v a i l a b l e f o r reference and study. I further agree that permission f o r extensive copying of t h i s thesis for s c h o l a r l y purposes may be granted by the Head of my Department or by his representatives. I t i s understood that copying or p u b l i c a t i o n of t h i s thesis f o r f i n a n c i a l gain s h a l l not be allowed without my w r i t t e n permission. The U n i v e r s i t y of B r i t i s h Columbia 2075 Wesbrook Place Vancouver, B.C. Canada V6T 1W5 i ABSTRACT What the home hemodialysis patient knows and wants to know about h i s health problem and i t s management forms the p r i n c i p a l target of the present i n v e s t i g a t i o n but i t also takes into account socio-emotional concerns, s k i l l i n administering therapy, and use of information sources. The respective perceptions of the patient and s t a f f members about these factors have been compared. This study also examines the r e l a t i o n s h i p between the amount of health information held by the patient and selected biographical c h a r a c t e r i s t i c s , and the r e l a t i o n s h i p between s t a f f estimates of health information possessed by the patient and t h e i r selected biographical c h a r a c t e r i s t i c s . Forty-four patients on home hemodialysis and twenty-nine s t a f f members involved i n the Training Program at three B r i t i s h Columbia hospi-t a l s were studied. Data were gathered through personal interviews and h o s p i t a l records, and were analyzed by simple frequency and percentage d i s t r i b u t i o n s , along with a Pearson product-moment c o r r e l a t i o n , One-way Analysis of Variance, Chi-square and T-values. Both the patients themselves and the s t a f f considered the patient to be knowledgeable about c r i t i c a l aspects of home d i a l y s i s management. S i g n i f i c a n t d ifferences were found between assessments made by patients and by s t a f f about the patient's l e v e l of knowledge, a d d i t i o n a l requests for information, the information sources preferred, past and present socio-emotional Concerns and sources of information for solving such Concerns. Greater knowledge was displayed by patients with higher s o c i a l status, fewer ch i l d r e n and higher l e v e l s of education. Those with i i c h i l d r e n and who were external i n o r i e n t a t i o n had a greater need for a d d i t i o n a l health information. Patients who spent the longest time i n the Training Program admitted to the greatest number of present Concerns and the f a r t h e r patients l i v e d from the renal unit the more knowledgeable they were about preparation and hook-up procedures. Greater use of i n -formation sources was reported by patients with fewer c h i l d r e n , higher s o c i a l status, and who were older. Patients l i v i n g at greater distances from the renal u n i t , those with fewer c h i l d r e n and external i n o r i e n t a t i o n preferred using more sources of information. The s t a f f estimated that patients would report more past and pre-sent Concerns than were a c t u a l l y reported. While patients were misinformed about various aspects of management of d i a l y s i s , cannula care, d i e t and medical problems, t h e i r knowledge was greater than estimated by s t a f f mem-bers. Patients also used and preferred fewer information sources than estimated by the s t a f f . Staff members who were younger, had residency experience and lower s o c i a l status estimated that patients were knowledgeable about t h e i r health problem. Staff members with shorter residency t r a i n i n g estimated patients to have had more past Concerns while those with longer residency t r a i n i n g and more teaching involvement f e l t that patients had more present Concerns. S t a f f members with longer residency t r a i n i n g estimated patients to have used more information sources, while those with shorter residency t r a i n i n g sug-gested that patients would prefer more information sources f o r a d d i t i o n a l information. Implications f o r patient and s t a f f i n - s e r v i c e education programs and the d i f f u s i o n of information have been included i n the discussion. i i i TABLE OF CONTENTS Page Abstract i L i s t of Tables v i i i L i s t of Figures x Acknowledgements x i CHAPTER I. INTRODUCTION 1 PURPOSE 3 STUDY QUESTIONS 3 DEFINITIONS OF TERMS 4 LIMITATIONS 5 IMPLICATIONS 6 PLAN OF STUDY 6 I I . REVIEW OF THE LITERATURE 7 PATIENT KNOWLEDGE AND TREATMENT OUTCOMES 7 LEARNER CHARACTERISTICS 8 Personal and S i t u a t i o n a l Factors 8 Ph y s i c a l Status 12 Psychological Status 12 PROFESSIONAL-PATIENT COMMUNICATION 14 PERCEPTIONS OF PATIENTS' LEARNING NEEDS 19 SOURCES OF PATIENT INFORMATION 21 i v CHAPTER Page II I METHODOLOGY 23 POPULATION 23 DEVELOPMENT OF THE INSTRUMENT 24 Knowledge Component 24 Learning Needs Component 25 Socio-emotional Concerns . . . 25 Preparation and Hook-up S k i l l Component 26 Information Sources 26 Internal-External Control of Reinforcement Scale • . 27 Blishen's (1967) Occupational Rating Scale (Blishen Scale) 27 Personal Data 28 Patients . . . . . . . . . . 28 Staf f 28 VALIDITY AND RELIABILITY 30 ANALYSIS OF THE DATA 30 IV THE PATIENTS 31 BIOGRAPHICAL CHARACTERISTICS 31 Age and Sex 31 M a r i t a l and Family Status 31 Years of Schooling, Country of B i r t h 33 Occupational Categories 33 Blishen Occupational Rating Scale (Blishen Scale) . . 33 Employment Status and Occupational Changes 38 V CHAPTER Page Distance from Renal Units 38 HEALTH AND TREATMENT CHARACTERISTICS 40 Home Hemodialysis Treatment History 40 Length of Home Hemodialysis Training Program . . . . 40 Treatment History by A l l Methods 42 Previous Methods of Treatment . . . . 43 Nature of Previous Treatments . 43 PSYCHOLOGICAL FACTORS 44 Internal-External Control of Reinforcement Scale . . 44 Socio-emotional Concerns: Past and Present 46 Past Concerns 46 Present Concerns 47 KNOWLEDGE AND SKILL 49 Level of Knowledge 49 Preparation and Hook-up A c t i v i t i e s 53 Learning Needs 56 Requests f o r A d d i t i o n a l Information and Services . . 60 INFORMATION SOURCES . . . 61 Sources Consulted for Information on Disease Management 63 Information Sources used f o r Past Concerns 65 Information Sources Preferred f o r Learning Needs . . 67 Information Sources Preferred for Present Concerns . 67 INTERCORRELATIONS AMONG PATIENT CHARACTERISTICS . . . . 72 v i CHAPTER Page S o c i a l Status 72 Years of School Completed 72 Distance from Renal Units to Place of Residence . . . 74 Internal-External Control of Reinforcement Scale and Socio-emotional Concerns . . . 74 Level of Knowledge 74 Preparation and Hook-up S k i l l s 75 Learning Needs 76 Sources of Information 76 Summary 77 V. THE STAFF . . 78 BIOGRAPHICAL CHARACTERISTICS 78 Blishen Occupational Rating Scale 79 Internal-External Control of Reinforcement Scale . . 82 ESTIMATES OF PATIENT CONCERNS 83 ESTIMATES OF PATIENT COMPETENCE 86 Level of Knowledge 86 PATIENT LEARNING NEEDS 88 INFORMATION SOURCES USED BY PATIENTS 91 Actual Information Sources Used 91 Knowledge 91 Past Concerns 92 Preferred Information Sources 96 Learning Needs and Present Concerns 96 STAFF CHARACTERISTICS: INTERRELATIONSHIPS 100 v i i CHAPTER Page S o c i a l Status 100 Internal-External Control of Reinforcement 102 Concerns: Past and Present 102 Estimates of Patient's Level of Knowledge and Learning Needs 102 Estimates of Patient's Use of Information Sources . . 103 Summary 104 COMPARISON: PATIENT AND STAFF FINDINGS 105 Socio-emotional Concerns: Past and Present 106 Knowledge Component 110 Learning Needs 112 Information Sources—Knowledge and Learning Needs . . 112 Concerns: Past and Present 115 C l i n i c a l Observations with Implications f o r Program Planning 115 VI SUMMARY, CONCLUSIONS AND RECOMMENDATIONS 119 CONCLUSIONS 120 RECOMMENDATIONS 121 POSSIBLE LINES OF FUTURE RESEARCH 126 REFERENCES 128 APPENDICES A PERCENTAGE DISTRIBUTION FOR INFORMATION SEEKING ACTIVITY. 139 , B INTERVIEW SCHEDULE 148 C ROTTER'S INTERNAL-EXTERNAL SCALE 187 v i i i LIST OF TABLES TABLE Page 1 Personal and S i t u a t i o n a l Variables Related to Amount of Health Knowledge 11 2 Biographical and Information-seeking Variables 29 3 Patient Occupation and Occupational Status by Sex . . . . 37 4 Categories of Patient Employment and Occupational Status by Sex 38 5 Average Number of Training Days by H o s p i t a l and by Sex . 42 6 D i s t r i b u t i o n of Patients by T o t a l Number of Types of Treatment by Sex 43 7 Patients by Nature of Previous Treatment by Sex 44 8 Patient C h a r a c t e r i s t i c s : Biographical 45 9 Socio-emotional Concerns: Past and Present as I d e n t i f i e d by Male and Female Patients 48 10 Misinformation about Kidney F a i l u r e and D i a l y s i s . . . . 50 11 Patient Responses: Preparation of Drake-Willock and K i i l Dialyzer 55 12 Patient Responses: Completing Hook-up Procedure . . . . . 58 13 A d d i t i o n a l Information and Services Needed f o r Better Coping 62 14 Sources Consulted f o r Information about Kidney Condition. 64 15 Sources Consulted for Information about Concerns: Past and Present 66 16 Sources Preferred for More Information about Kidney Condition 68 17 Patient C h a r a c t e r i s t i c s : Information-seeking 71 18 C o r r e l a t i o n C o e f f i c i e n t s : Patients 73 i x TABLE Page 19 Twenty-nine S t a f f Members Selected Biographical C h a r a c t e r i s t i c s 80 . 20 S t a f f C h a r a c t e r i s t i c s : Biographical by Sex 81 21 S t a f f Estimates: Socio-emotional Concerns 84 22 Kidney F a i l u r e and D i a l y s i s Misinformation Estimated by St a f f 87 23 S t a f f Estimates of Patient S k i l l to Prepare Equipment and the Hook-up Procedure 89 24 S t a f f Estimates: Information Sources which Patients used to Learn to Manage Kidney Conditions 93 25 S t a f f Estimates of Patient Use of Information Sources f o r Concerns: Past and Present 95 26 St a f f Estimates: Preferred Information Sources which Patients use to Learn more about Kidney Conditions . . 97 27 S t a f f C h a r a c t e r i s t i c s : Information-seeking 99 28 C o r r e l a t i o n C o e f f i c i e n t s : S t a f f 101 29 Means and T-Values f o r Information-seeking: Patients vs. S t a f f 106 30 Patient Use of Miscellaneous Sources f o r Knowledge Items. 140 31 Patient Use of Miscellaneous Sources f o r Past Concerns. . 141 32 Patient Preference f o r Miscellaneous Sources f o r Learning Needs 142 33 Patient Use of Miscellaneous Sources f o r Present Concerns 143 34 Staff Estimates of Patient Use of Miscellaneous Sources f o r Knowledge Items 144 35 S t a f f Estimates of Patient Use of Miscellaneous Sources f o r Past Concerns 145 36 S t a f f Estimate of Patient Use of Miscellaneous Sources for Learning Needs 146 37 S t a f f Estimates of Patient Preference f o r Miscellaneous Sources f o r Present Concerns 147 X LIST OF FIGURES FIGURE Page 1 Age and Sex 32 2 Number of Children 34 3 Educational Background 35 4 Occupational Background 36 5 Blishen Occupational Rating 39 6 Map of B r i t i s h Columbia: Location of Renal Units and Home Communities of Patients 41 7 Correct Responses for Simulated Dialyzer Preparation . . 54 8 Correct Responses f o r Simulated Hook-up Procedure . . . . 57 9 Patient and S t a f f Perceptions of Patient Concerns: Past and Present 108 10 Information Sources used by P a t i e n t s : Knowledge vs. Learning Needs: Patients vs. S t a f f 114 11 Information Sources used by Patients: Past vs. Present Concerns: Patients vs. S t a f f 116 x i ACKNOWLEDGEMENTS Several people generously contributed towards the completion of t h i s research p r o j e c t . Chief among them were: Dr. Coolie Verner for h i s guidance and i n s t r u c t i o n i n the development and implementation of the study, Dr. John B. C o l l i n s , for h i s advice and encouragement throughout the s t a t i s -t i c a l a n a l y s i s , and Dr. John E. Pr i c e and Ms. A l i c e J . Baumgart, f o r t h e i r counsel and support i n developing the c l i n i c a l features of the pr o j e c t . Along with Dr. James E. Thornton, they a l l were most h e l p f u l i n c r i t i c a l l y reviewing the i n i t i a l d r a f t s of the d i s s e r t a t i o n . Much appreciated i s the computer assistance provided by Dr. Dale Rusnell. The encouragement and support of my friends and nursing colleagues has been invaluable. Funding from the Canadian Red Cross, the Registered Nurses' Asso c i a t i o n of B r i t i s h Columbia and the Un i v e r s i t y Women's Club of Vancouver Mature Student Fund i s g r a t e f u l l y acknowledged. Ms. Baraba Fellows, Ms. JoAnn Albers, Ms. Joan Walton and Ms. Marilyn Flowers provided information about the d i a l y s i s t r a i n i n g pro-grams i n e f f e c t at t h e i r i n s t i t u t i o n s . Ms. Penny Adler, and Ms. Mary Cruise and Ms. Helen Smith, a s s i s t e d i n reviewing the data c o l l e c t i n g instrument, and i n judging items r e s p e c t i v e l y . x i i By providing information and allowing f o r the observation of t h e i r a c t i v i t i e s , the s t a f f members from the renal and home hemodialysis units at The Royal Jubilee H o s p i t a l , St. Paul's H o s p i t a l and The Van-couver General H o s p i t a l , a s s i s t e d i n the development of th i s research p r o j e c t . Furthermore, s t a f f members involved i n the Home Hemodialysis Training Programs at the three i n s t i t u t i o n s p a r t i c i p a t e d , more d i r e c t l y , by consenting to be interviewed. Deserving p a r t i c u l a r a t t e n t i o n are the home hemodialysis patients and t h e i r f a m i l i e s who p a r t i c i p a t e d i n the interviews. I am deeply g r a t e f u l f o r t h e i r contributions and h o s p i t a l i t y . By dedicating t h i s d i s s e r t a t i o n to my parents, I acknowledge on a personal l e v e l , the endeavors of men and women with chronic health problems to l i v e a normal l i f e . TO MY PARENTS ANNIE ERICKSON NISKALA HEIKKILA and the late VERNER HEIKKILA CHAPTER I "Health cannot be given to people, it demands their participation." Rene Sand INTRODUCTION With advances i n medical technology and health care, the patient i s being encouraged to assume greater r e s p o n s i b i l i t y i n managing his own care. In order to do so, a patient should have a grasp of what to do and why. Consequently, increasing emphasis i s being placed upon patient education as an e s s e n t i a l component of care. This may be f a c i l i t a t e d by planned programs f o r patient education (De l a Vega, 1966; Hobbs, 1970; p. 1). To plan e f f e c t i v e programs, i t i s necessary to have information about what the patient knows about his condition, h i s i d e n t i f i c a t i o n of h i s own learning needs, and h i s socio-demographic c h a r a c t e r i s t i c s , any or a l l of which may a f f e c t h i s response to programs. For the most part, patient teaching has been developed on the health p r a c t i t i o n e r ' s perceptions of patient learning needs but i t i s the patient's perceptions of h i s learning needs that determines what he w i l l l e a r n i n any s i t u a t i o n . While patient education i s important for a l l , i t i s of p a r t i c u -l a r s i g n i f i c a n c e f o r i n d i v i d u a l s i n the end-stage of kidney disease where 1 2 l i f e depends on learning s u r v i v a l techniques. These patients must, of necessity, be concerned about the management of t h e i r d i e t , medications, cannulas, the maintenance of the a r t i f i c i a l kidney machine and other r e l a t e d medical and t e c h n i c a l problems. They may also need assistance i n accepting long-term i l l n e s s and i n coping with a l t e r e d l i f e s t y l e s . While t h i s may be done i n h o s p i t a l , concern over increased evidence of chronic kidney disease i n our society (Task Forces, 1969; p. 303) and over the r i s i n g costs of health services associated with i t s treatment (Hobbs, 1970) has led to home treatment programs. Not only i s t h i s cheaper but i t i s also more humane i n that i t enables the patient to remain a functioning family member. Although Fellows (1966a, 1966b), Redman and Daly (1969) and Ebra and Toth (1972) make reference to the necessity to recognize i n d i -v i d u a l needs, reports of the learning needs of d i a l y s i s patients appear to be mainly from the p r o f e s s i o n a l health viewpoint, and only minimal information i s a v a i l a b l e on how patients see t h e i r needs and what e f f e c t background variables may have on t h e i r a b i l i t y to learn s u c c e s s f u l l y about the management of t h e i r health problem. Research indicates that while health p r o f e s s i o n a l s want patients who have knowledge, they appear hesitant to provide a l l the required information (Pratt, 1956; P r a t t et a l . , 1957). When t h i s information i s given i t tends to r e f l e c t , not what the patient wants to know, but pro-f e s s i o n a l preconceptions about what the patient ought to know (Skipper et a l . , 1964; Dodge, 1969). I t would seem necessary to i d e n t i f y the discrepancy which may e x i s t between the chronic renal patient and the 3 s t a f f responsible for t r a i n i n g programs i n order to concentrate on those aspects of s e l f c a r e management that are most c r i t i c a l . PURPOSE The purpose of t h i s i n v e s t i g a t i o n was to determine the knowledge l e v e l , the socio-emotional Concerns, and the motor s k i l l s required by a patient to manage home hemodialysis s a f e l y . To t h i s end t h i s study has examined the knowledge component by asking what a patient already knows about h i s health problem, what he wants to know i n addition, and where he obtains information. With regard to the socio-emotional component the s i g n i f i c a n t questions are, what socio-emotional Concerns are i d e n t i -f i e d by the patient, and what are the s t a f f ' s estimate of those Concerns. The subject of motor s k i l l s r e l a t e to the s p e c i f i c questions, f i r s t , what does the patient already know about the preparation of the d i a l y s i s equipment and the "hook-up" procedure, next, what does he want to know a d d i t i o n a l l y , and f i n a l l y , what are the s t a f f ' s estimates of the patient's a b i l i t y to carry out those procedures. This i n v e s t i g a t i o n also considered the r e l a t i o n s h i p between the perceptions of the patient and the s t a f f by examining the degree of agreement between the respective estimates of the patient and the s t a f f of the patient's knowledge l e v e l , h i s socio-emotional Concerns, motor s k i l l s and information sources. Also explored was what r e l a t i o n s h i p e x i s t s between the health information estimates of the respondents and selected biographical c h a r a c t e r i s t i c s . STUDY QUESTIONS The major questions to be investigated are: 1. What r e l a t i o n s h i p s e x i s t between the amount of health 4 information possessed by the patient and selected biograph-i c a l characteristics? 2. How does information available to the patient compare with information he feels he needs? 3. Where does the patient look for additional information? 4. How well can the staff anticipate the information accuracy and needs of the patient? 5 . What relationship exists between staff estimates of the amount of health information possessed by the patient and selected biographical characteristics of staff members? DEFINITIONS OF TERMS For the purposes of this study the following terms were defined: Health Care Team (H.C.T.) - a group of health professionals such as the dietitian, physician, registered nurse, social worker and tech-nician who had participated in the instruction and counselling of the patient during involvement in the Home Dialysis Training Program. In this study the terms "health care team," "health professionals," "practitioners" and "staff" w i l l be used inter-changeably . Knowledge Score - the total number of correct responses to structured questions about chronic kidney failure and dialysis (cause, management and prognosis of the chronic health problems). Learning Needs of the Patients - an objectively identified deficiency measured by the number of knowledge, s k i l l and socio-emotional 5 items that the patient stated that he wanted to know about kidney f a i l u r e and d i a l y s i s . The terms "expressed learning needs," "desired a d d i t i o n a l information" and "lea r n i n g needs of the pat i e n t " w i l l be used interchangeably. Sources of Information - those sources used by the patient to obtain information about chronic kidney f a i l u r e and d i a l y s i s , such as the d i e t i t i a n , the physician and the reg i s t e r e d nurse i n the renal u n i t , the s o c i a l worker, technician, p r o f e s s i o n a l l i t e r -ature, the family or personal physician, other patients, r e l a -t i v e s , personal experiences and miscellaneous sources. Actual Information Sources - actu a l sources of information about kidney f a i l u r e and d i a l y s i s . Preferred Information Sources - desired or p o t e n t i a l sources of information. Preparation and "Hook-up" S k i l l Score - the t o t a l number of correct steps that the patient indicated he would do to prepare the d i a l y s i s equipment and to complete the hook-up procedure. Socio-emotional Concerns - Concerns dealing with r e a l l i f e problems encountered by the person on home hemodialysis. LIMITATIONS This study was confined to patients and s t a f f involved i n home hemodialysis programs at three large h o s p i t a l s i n B r i t i s h Columbia. I t s findings cannot therefore be generalized to renal patients outside the home s e t t i n g . The v a l i d i t y of the interview schedule does not extend 6 beyond face and content v a l i d i t y . The indices which operationally de-f i n e the informant's perceptions are gl o b a l i n nature, and therefore should be regarded as y i e l d i n g generalized r e s u l t s . IMPLICATIONS The r e s u l t s of th i s study may provide a basis f o r a more syste-matic approach to planning educational a c t i v i t i e s appropriate f o r home hemodialysis p a t i e n t s . The i d e n t i f i c a t i o n of information sources used and preferred by the patient may provide data about the source and flow of information and may reveal inappropriate use of information sources. More systematic patient education programs may r e s u l t i n more patients making more e f f i c i e n t use of information. Admittedly, study findings may be d i f f i c u l t to generalize beyond Home Hemodialysis Programs i n the study i n s t i t u t i o n s but, at the very l e a s t , hypothesis generation may be po s s i b l e . PLAN OF THE STUDY The l i t e r a t u r e relevant to the learning needs of patients and the teaching function of health care team members as i t r e l a t e s to patient education i s reviewed i n Chapter I I . The methodological o u t l i n e appears i n Chapter I I I . In Chapter IV an analysis of the patient data i s pre-sented. Chapter V contains an analysis of s t a f f data and a comparison of the findings as they r e l a t e to the patients and s t a f f . The summary, con-clusions and recommendations f o r future development of patient education programs appears i n Chapter VI. CHAPTER II REVIEW OF THE LITERATURE This review includes l i t e r a t u r e on factors i n f l u e n c i n g patient education r e l a t e d to: patient knowledge and treatment outcomes; learner c h a r a c t e r i s t i c s , l e v e l of knowledge and learning a b i l i t y ; p r o f e s s i o n a l -patient communication; perceptions of the patient's learning needs and, sources of patient's information. PATIENT KNOWLEDGE AND TREATMENT OUTCOMES Several research studies i n d i c a t e that the more a patient knows about h i s condition, the more successful h i s treatment becomes (Pratt et a l . , 1957; Goodrich and Schwartz, 1959; C u r t i s , 1961; Heinzelman, 1962; Dumas and Leonard, 1963; Nite and W i l l i s , 1964; Bergersen, 1967 and Dodge, 1969). In 1967 Bergersen noted that learning motivated the patients to cooperate and p a r t i c i p a t e i n therapy, Janis (1958), Kauffman, (1965) and Myers (1965) found that inadequate understanding of i l l n e s s often leads to a v a r i e t y of emotional disturbances which compound the treatment problem. Such evidence seems to imply a r e l a t i o n s h i p between treatment success and patient learning. I f e f f e c t i v e learning i s an e s s e n t i a l component of e f f e c t i v e health care, then i t would seem necessary to i s o l a t e factors which either enhance or i n t e r f e r e with the teaching-learning outcomes. This has not been studied extensively. 7 8 LEARNER CHARACTERISTICS Personal and S i t u a t i o n a l Factors Attempts to l i n k a patient's l e v e l of knowledge about common health problems and learning a b i l i t y with socio-demographic variables such as age, sex, m a r i t a l status, socio-economic status, and race have produced c o n f l i c t i n g r e s u l t s . Seligman et a l . , (1957) found age, sex, education and previous experience with i l l n e s s r e l a t e d to the patient's l e v e l of information about ten common diseases under i n v e s t i g a t i o n , while Samora et a l . , (1962) i n r e p l i c a t i n g Seligman's study reported that age and sex were not s i g n i f i c a n t l y associated with l e v e l s of health knowledge, although education and socio-economic p o s i t i o n were r e l a t e d . Mohammed's (1964) research with diabetics revealed that age had a strong negative p r e d i c t i v e value regarding the diabetic's a b i l i t y to comprehend health information; on the other hand, sex, race, b i r t h place, occupation and years of residence bore no r e l a t i o n s h i p at a l l . E l l i s (1964) reported that "a large proportion of patients who were e i t h e r young, male or white with a high l e v e l of formal education and a high l e v e l of l i v i n g , had a high l e v e l of knowledge about diabetes . . . and problem s i t u a t i o n s " (p. 189). These patients also expressed independent at t i t u d e s and low fate a t t i t u d e s about l i f e s i t u a t i o n s . Dodge (1969) stated that "personal variables such as sex, age and education appear r e l a t e d more to what might be considered the i n -d i v i d u a l ' s h a b i t u a l response patterns based on his accumulated role s and experiences" (p. 510) than to other v a r i a b l e s . Southworth (1965) 9 discovered that while adults were generally w e l l informed about the cause, spread and treatment of tuberculosis, there was evidence of misinformation or lack of information among the older age group and among residents i n the lower educational and economic l e v e l s . Meldrum et a l . ' s (1968) study of 24 veteran male patients on chronic hemodialysis suggested that the presence of ch i l d r e n i n the home had a p o s i t i v e e f f e c t on the r e h a b i l i t a t i o n of these d i a l y s i s patients. Pragoff (1962) noted that the adjustments required to carry out tuberculosis therapy favored persons who were married. Samora et a l . , (1962), Southworth (1965) and Rosenstock et a l . , (1966) indicated that there was a p o s i t i v e r e l a t i o n s h i p between occupational status and l e v e l of health information. Meldrum et a l . , (1968) noted that employment appeared to have some p o s i t i v e e f f e c t on the r e h a b i l i t a t i o n of the veteran r e c e i v i n g home hemodialysis. The assumption might be made that i n order to maintain employment the patient was motivated to learn how to manage h i s health problem. The most consistent predictor of the patient's l e v e l of knowledge and learning c a p a b i l i t y about health and i l l n e s s appears to be the number of years of schooling (Seligman et a l . , 1957; Pragoff, 1962; Samora et a l . , 1962; E l l i s , 1964; Mohammed, 1964; Southworth, 1965; Rosenstock et a l . , 1966; Meldrum et a l . , 1968; and Dodge, 1969). Study findings by Samora et a l . , (1962) suggested that regional differences may account for v a r i a t i o n s i n an i n d i v i d u a l ' s l e v e l of i n -formation about ten common diseases. Jenkins (1966) found that people's 10 knowledge of health problems were r e l a t e d to the prevalence of a given disease i n the community. Numerous studies l i n k i n g differences i n health b e l i e f s and be-havior to c u l t u r a l factors suggests that c u l t u r a l differences play a rol e i n patient learning. B e l i e f s about i l l n e s s as a f a c t o r a f f e c t i n g the patient's l e v e l of information has been documented by K a r i e l (1962), Suchman (1965) and Mechanic (1968) (Table 1). The patient's learning may also be af f e c t e d by his readiness f o r information. Readiness i s a state of preparatory adjustment which according to Havighurst : (1952, 1964) and Verner (1964, 1970) must be nurtured for that "teachable moment." According to Bruner (1966) and Mednik (1964) learning i s a matter of having the a v a i l a b l e responses r e -quired f o r a task. An i n d i v i d u a l may not be able to learn a task because he i s not p h y s i c a l l y or ps y c h o l o g i c a l l y prepared to do so. Because of t o x i c i t y and anxiety the chronic renal patient may not be ready to accept or use information provided by the health professionals at a given moment (Fellows, 1966a; Cummings, 1970). Thus, i n planning educa-t i o n programs health professionals need to be f a r more s e n s i t i v e to the patient's readiness to learn. Two factors of importance i n readiness to learn are timing and information load. Postman and Weingartner (1969) suggest that school drop-out may be a r e s u l t of an "information o v e r k i l l " which was not per-tinent to the learner at the time. A p a r a l l e l may e x i s t f o r the learner-patient which would suggest that the amount and timing of information input may be c r u c i a l . Studies of diabetics by Et z w i l e r (1962), E l l i s TABLE 1 Person a l and S i t u a t i o n a l V a r i a b l e s * Related to Amount of Health Knowledge: P a t i e n t s V a r i a b l e s Sex Age M a r i t a l Status Country of Birth Number of C h i l d r e n Soclo-Economic Experience w i t h I l l n e s s Other Researchers r e p o r t i n g r e l a t i o n s h i p among P 6 S v a r i a b l e s and l e v e l of informa-tion Prngoff (1962) s i g . F>M E l l i s (1964) s i g . M>F Suchman (1965) s i g . F>M Soulhvorth (1965) s i g . H>T Dodge (1969) si g . F>M - E l l i s (1964) -Mohammed (1964) • -Southworth (1965) -MeIdrum et a l . , (1968) -Dodge (1969) Pragoff (1962) B i g . Hd tfd>S:D Heldrua e t a l . , (1968) • i g . Hd>S +Seligoan et a l . , (1957) +Pragoff (1962) (women only) +Samora et a l . , (1962) + E l l i s (1964) •mohammed (1964) +Southwoith (1965) +Rosenstock et a l . , (1966) •fMeldrum et a l . , (1968) +Dodge (1969) -MeIdrum et a l . , (1968) (rehabili-tation) +Pragoff (1962) +Satnora et a l . , (1962) •fMohainmed (1964) •fSouthworth (1965) • +Rosenstock et a l . , (1966) (income) -tPragoff (1962) +Dodge (1969) E l l i s (1964) B i g . W>KW Rosenstock et a l . , (1966) Big-E t h n i c i t y Southworth (1965) B i g . Samora ec a l . , (1962) (may be where c u l -t u r a l d i f f e r ' ences are s i g . e.g., Anglod and' Spanish-Aner leans Rosenstock et a l . , (1966) B i g U>KW +Pragoff (1962) l i v i n g arrangements E l l i s (1964) (Level of agreement w i t h health author-i t i e s on content areas (Age at onset of i l l n e s s ) Expressed Independent a t t i t u d e s about l i f e s i t u a t i o n s ) P r a t t et a l . , (1958) s i g . ( p h y s i c i a n -patient r e -l a t i o n s h i p ) Seeman & Evans (1962) *(low i n a l i e n a -t i o n ) Mohammed (1964) s i g . (length of residency) (emigrant) Researchers r e p o r t i n g no r e l a t i o n -ships among P & S v a r i a b l e s and l e v e l of informa-tion Seligman Seligman e t a l . , et a l . . (1957) (1957) not s i g . no s i g . Sandra Pragoff et a l . , (1962) (1960) not no s i g . important Mohammed Socio i a (1964) et a l . , no s i g . (1962) Rosenstock no s i g . e t a l . , Rosentock (1966) et a l . . very (1966) l i t t l e l e s s con-d* f ference s i s t e n t r e l a t i o n -s h i p no i l g . •" no c i g n i f i c a n c e s i g . " a i g n i i i c a n c e F " female M - Kale S l U s (1954) no sig. Seligman et a l . , (1957) no aig. E l l i s (1964) ( g a i n f u l employment no tig.) W - White IV » Mon-white + • p o s i t i v e - negative Md' - Married S - Sin g l e D " Divorced Wd • Widowed Seligman Pragoff et a l . , (1962) (1957) Mohammed Pragoff (1964) (1962) no sig. E l l i s (1964) (duration of i l l n e s s ) no s i g . Wutklns (1967) 12 (1964), Watklns et a l . , (1967) and Williams et a l . , (1967) fu r n i s h evidence to support t h i s . P h y s i c a l Status A patient's p h y s i o l o g i c a l imbalances may a f f e c t h i s perceptions about h i s condition and h i s need f o r information to deal with hi s health problem. In research on the chronic r e n a l patients, Kennedy et a l . , (1963, 1964), De-Nour et a l . , (1968), Short and Wilson (1969), Scribner (1969) and Cummings (1970) reported that gross chemical disturbances such as e l e c t r o l y t e and acid-base imbalances caused adverse body re-actions. Subsequently, t h i s a f f e c t e d the patient's a t t e n t i o n and con-centration spans and resulted i n deteriorated higher i n t e l l e c t u a l processes such as perceiving r e l a t i o n s h i p s between acts and t h e i r con-sequences or, i n maintaining finely-tuned language s k i l l s . P sychological Status Psychological stress generally tends to impair a patient's a b i l i t y to communicate and to l e a r n . Research by Janis (1958) with s u r g i c a l patients, revealed that poorly prepared patients exhibited a higher degree of stress before and a f t e r surgery than did those with a c l e a r e r understanding of what to expect. Other studies such as those by Postman and Bruner (1948) and Mechanic (1962) describe the deleterious e f f e c t s of s t r e s s on an i n d i v i d u a l ' s perceptions and on h i s a b i l i t y to perform. Chronic renal patients are prone to overuse defence mechanisms since r e a l i t y factors are consciously i n t o l e r a b l e . Their tendency i s 13 to resort to blaming, de n i a l , displacement, i s o l a t i o n and rea c t i o n f o r -mation (Shea et a l . , 1965; Sand et a l . , 1966; Wright et a l . , 1966; De-Nour et a l . , 1968; Short and Wilson, 1969; Walton, 1970; and Ebra and Toth, 1972). Aitken-Swan and Easson (1959) found that the mechanisms of fo r g e t t i n g , d i s t o r t i n g and denia l i n t e r f e r e with the a b i l i t y to accept and r e t a i n information. Barber et a l . , (1963) indi c a t e d that among d i a l y s i s patients ego defence mechanisms were key factors i n the patient's a b i l i t y to cooperate i n a r e h a b i l i t a t i o n program. In review-ing research r e l a t e d to changes i n incidence of anxiety symptons, Kuhlen (1963) concluded that increasing age brings s u s c e p t i b i l i t y to stress and threat (p. 99). Another normal ego rea c t i o n i n human behavior i s depression, a l -though i t i s not usually classed as a defence mechanism. Goldstein and Reznikoff (1971) proposed that the high rate of sui c i d e among long-term hemodialysis patients was an attempt by them to reduce the anxiety i n -duced by the treatment program. Expressions of s u i c i d a l tendency are often manifested by dietary i n d i s c r e t i o n , i n c o r r e c t dosages of medi-cines, improper d i a l y s i s treatment, neglect of cannula s i t e s and i n rar e r instances exsanguination by opening the tubing j o i n i n g the cannulas. These in v e s t i g a t o r s proposed strategies to a s s i s t patients with chronic conditions to learn behavior patterns based on an understanding of the problem rather than behaviors r e i n f o r c e d by external rewards. Bruner also supported t h i s strategy (1966, p. 36). The patient's sense of powerlessness and a l i e n a t i o n has been correlated with poor learning by Seeman and Evans (1962), Johnson (1967) and Zahn (1969). 14 B r i a u l t (1970) and Rawnsley (1970) reported that problems re-lated to economic pressures have been c i t e d as factors impeding r e h a b i l i -t a t i o n . These are p a r t i c u l a r l y acute i n s i t u a t i o n s a f f e c t i n g the male patient i n h i s role as breadwinner. A l t e r a t i o n i n family l i f e s t y l e to accommodate the patient may al s o aggravate the s i t u a t i o n (Shambaugh, et a l . , 1967; De Noyer (1969). Shulman and Pacey (1974) i n t h e i r study of the q u a l i t y of l i f e of 28 home hemodialysis patients and th e i r f a m i l i e s reported that "the qu a l i t y of l i f e on home hemodialysis i s va r i a b l e and cannot be r e l i a b l y predicted by a c l i n i c a l assessment" (p. 12). Eighteen couples reported that the q u a l i t y of l i f e as measured by spouse r e l a t i o n s h i p , sexual a c t i v i t y , work e f f i c i e n c y and l e i s u r e a c t i v i t i e s was maintained at s a t i s f a c t o r y or acceptable l e v e l s with minimal burden to the whole fam-i l y . In contrast, the spouses of the 10 patients who experienced de-pression with s u i c i d a l i deation, impaired working a b i l i t y and l e i s u r e a c t i v i t i e s , reported severe burdens on the whole family. Holcomb and Macdonald (1973) reported that common concerns of patients on home hemodialysis p e r t a i n to health, depression and f r u s -t r a t i o n and not achieving t h e i r ambitions i n l i f e . Some patients also wished that they were dead. PROFESSIONAL-PATIENT COMMUNICATION Several problems which constitute b a r r i e r s to e f f e c t i v e communi-cation between health professionals (teachers) and patients (learners) have been i s o l a t e d . 15 Medical Jargon: Romano (1941), Samora et a l . , (1961), King (1962), and Kauffman (1965) documented that patients desire l e s s medical terminology i n t h e i r communications from physicians. C o l l i n s (1955), i n an informal survey of 100 out-patients, discovered that very few of the patients understood the words used when given dietary advice. Mes-sages delivered i n medical jargon, are not usually understood and con-sequently have no meaning or relevance to the learner. Disagreement over R e s p o n s i b i l i t y f o r Patient Teaching: Studies by Conrad (1957), Kutner (1958), N i c k e l l (1967), and Shantz (1968) show that there i s l i t t l e agreement as to who i s responsible f o r teaching the pa t i e n t . "By t r a d i t i o n and ancient d e f i n i t i o n , the doctor i s the teacher" (American H o s p i t a l Association, 1965, p. 31). Simonds (1963) suggested that such t e r r i t o r i a l prerogatives has hampered health education develop-ments. Physicians assign only minor importance to the nurses' respon-s i b i l i t y for teaching patients s e l f - c a r e methods. Studies by Pohl (1965) and Palm (1971) revealed that nurses consider teaching as an important part of t h e i r r o l e but Wallace (1960), Bennis et a l . , (1961), Jenkins (1961), Malone et a l . , (1962) and Redman (1968) revealed inconsistencies i n the implementation of t h i s b e l i e f . Malone et a l . , (1962) studied nurses working i n an out-patient depart-ment and reported that physicians d i d not expect or encourage nurses to teach p a t i e n t s . Nursing supervisors also shared t h i s lack of teaching expectation. Patterson (1961) noted that evaluation of c l i n i c a l com-petence which stresses the nurse's expressive (teaching, supporting) r o l e i s not regarded as s i g n i f i c a n t by administrators and physicians. 16 Such incongruencies between the physician and the nurse are l i k e l y to lead to omissions. Avoidance Behavior: Behavior by which the c h r o n i c a l l y i l l p atient i s avoided by physicians, medical students and other health team members, has been reported by Ford et a l . , (1962), De-Nour and Czaczkes (1968) and Glaser and Strauss (1965). Contrary evidence i s presented by F i e l d (1967) who noted that there was a p o s i t i v e change i n the a t t i t u d e of medical p r a c t i t i o n e r s toward a patient when the physician recognized him as ch r o n i c a l l y i l l . Callahan et a l . , (1966) postulated that the needs of the medical team and not those of the patient may decide the type of r e -la t i o n s h i p established between the physician and the c h r o n i c a l l y i l l p a t i e n t . I f i n f a c t there i s a tendency f o r the physician to avoid a patient declared c h r o n i c a l l y i l l , communication between physician and patient may be impaired or diminished and patient s e l f - c a r e learning needs might not be met. The T r a d i t i o n a l Doctor-Patient Relationship: King (1962) and Taylor (1962) indicated that patients are expected to be compliant, dependent and to behave i n accordance with the dictates l a i d down by the physician and other health p r o f e s s i o n a l s . In the t r a d i t i o n a l s i c k r o l e postulated by Parsons (1958) and Parsons and Fox (1958), the patient was expected to be a passive consumer of medical services and to cooperate with medical authority. Many authors have challenged the appropriateness of th i s conception of the doctor-patient r e l a t i o n s h i p i n chronic i l l n e s s . A l t e r n a t i v e conceptualizations have been proposed which emphasize more active p a r t i c i p a t i o n by the patient i n treatment a c t i v i t i e s 17 and an educative function f o r health professionals (Szasz and Hollender, 1956; Somers and Somers, 1961; Cogswell and Weir, 1964; Callahan et a l . , 1966; Kassebaum and Baumann, 1965 and Christman, 1967). The lack of informativeness of health professionals has been widely c r i t i c i z e d . Korsch (1972) noted that the physician's f a i l u r e to provide information was a major f a c t o r i n the patient's d i s s a t i s f a c t i o n and f a i l u r e to follow through with recommended treatment. Pro f e s s i o n a l S p e c i a l i z a t i o n : Zola (1963) suggested that doctor-patient communications are influenced by the medical s p e c i a l t y . This has been supported by B a l i n t (1964) who reported that physicians seemed to e s t a b l i s h more e f f e c t i v e communication with patients than did sur-geons. S i m i l a r l y Pohl (1965), found that p u b l i c health nurses were more aware of the r o l e of patient teaching as an i n t e g r a l part of patient care than were nurses i n other p r a c t i c e areas. Research into the r e l a t i o n s h i p of various personal and s i t u a -t i o n a l v a r i a b l e s to the teaching role or i d e n t i f i c a t i o n of learner needs by health care team members i s l i m i t e d . Pohl (1965) reported that the frequency of teaching a c t i v i t y by nurses was associated with: years of experience, basic c o l l e g i a t e preparation, a d d i t i o n a l educational a f f i l -i a t i o n , area of p r a c t i c e (such as public: health) and courses i n teach-ing. The l a t t e r two factors are reported to have had the greatest i n -fluence. Palm (1971) showed no r e l a t i o n s h i p between the p r i o r i t y which nurses a f f o r d patient teaching and t h e i r j o u r n a l reading habits, t h e i r year of graduation (although older graduates did show a tendency to give top p r i o r i t y to teaching), the number of years nursing experience 18 and f u l l or part-time employment. Palm contradicts Pohl i n noting that nurses without c o l l e g i a t e education gave p r i o r i t y to patient teaching. Patient's View of the Patient Role: The patient's perception of appropriate behavior when seeking help may also be an important b a r r i e r i n p a t i e n t - p r o f e s s i o n a l communications. The reluctance to seek information has been extensively documented. The reasons for t h i s re-luctance include: busyness of doctors and nurses ( F i e l d , 1967), fear of questions being considered t r i v i a l (Gowan and Morris, 1964; F i e l d , 1967), and c u l t u r a l and status differences between professionals and patients (Baumann, 1961; Rainwater, undated). A problem found by Mauksch and Tagliacozzo (1963) and Cartwright (1964) indicated that patients often do not d i f f e r e n t i a t e between t h e i r need f o r information about t h e i r condition or prognosis and t h e i r need for information on how to manage t h e i r problem. The patient i s expected to cooperate by accepting without question the dictates of p r o f e s s i o n a l helpers. Instead of being an informed consumer he i s expected to be an ignorant layman (Tagliacozzo and Mauksch, 1972; p. 181). Most patients seem to learn the "be cooperative" role early i n l i f e and take i t very s e r i o u s l y (Tagliacozzo and Mauksch, 1972; 175-179). I n s t i t u t i o n a l Factors: According to Georgopoulos (1966), bureaucratic features of h o s p i t a l organization that serve to hamper patient education include: (1) f a i l u r e to t r e a t each patient as an i n d i v i d u a l ; (2) c l e a r d e f i n i t i o n of roles and functions of health care s t a f f and, (3) w e l l drawn l i n e s of authority. He described the "Hospital 19 as a u t h o r i t a r i a n , subordinating the patient or health care worker and h i s needs to the larger group i n behalf of the bureaucracy and e f f i c i e n t operation of the system".(p. 9). He further stated that fragmentation of services compounds communication problems. Neal (1962) postulated that p r a c t i t i o n e r - p a t i e n t communications are influenced by such organi-z a t i o n a l features. Often i n order to survive the bureaucracy, both health professionals and patients adopt posi t i o n s that tend to reduce s t r a i n i n r ole performance and thus probably a f f e c t patient health care and patient learning adversely. PERCEPTIONS OF PATIENTS' LEARNING NEEDS Ea r l y research by P r a t t et a l . , (1957), Kutner (1958) and Dodge (1961, 1963) revealed that patients wanted to know more about t h e i r i l l n e s s than the physician and others considered important to give them. Randall (1947), King (1962), Tao-Kim-Hai (1957), Mumford and Skipper (1967) have documented the desire by i n d i v i d u a l s to learn about the h o s p i t a l environment. Dodge (1969) noted that patients' "main cogni-t i v e needs concerned information which would enable them to meet the l i f e requirements which were or would be imposed upon them" (p. 509). The patients wanted solutions to r e a l problems. More recently, Dodge (1972) found that patients wanted s p e c i f i c information about t h e i r conditions. Nurses, on the other hand, placed emphasis on what to expect i n care. A l t and Linehan (1966) and Spiegel (1967) focused on informa-t i o n needs of patients and t h e i r f a m i l i e s . Uppermost was the need to 20 know what was done to them and why. The patients also wanted the physician to t a l k with them p r i v a t e l y and to give simple answers with fewer medical terms. Clark (1967) concentrated on information acquired i n the h o s p i t a l that would prepare patients to care for themselves at home. Only 44 per cent of the discharged patients studied i n d i c a t e d that they had received some information on how to look a f t e r themselves. This suggests that patients, given the opportunity, were ready to learn more. Skipper et a l . , (1964) reported that the patients wanted to know a number of things about t h e i r i l l n e s s e s : the meanings of symptoms, the implications of the diagnostic tests and d e t a i l s about the prescribed treatment. Furthermore, patients wanted more information from both the doctor and the nurse about medical procedures, treatment and prognosis. Dlouhy et a l . , (1963) discovered that 93 per cent of the h o s p i t a l i z e d patients were concerned with the meaning of diagnostic t e s t r e s u l t s and wanted c l a r i f i c a t i o n . This i s supported by Mauksch and Tagliacozzo (1963), Cartwright (1964), and Riverman (1965). To learn more about p a r t i c u l a r nursing problems of patients undergoing intermittent hemodialysis, Aydelotte discovered that patients and t h e i r family members rank highest t h e i r desire for information on symptoms of i l l n e s s or e f f e c t s of therapy (1967). By contrast, nurses gave l e s s e r importance to these items. Alderman's (1968) exploratory study of the expressed and recorded problems encountered by f i v e home d i a l y s i s patients and t h e i r technicians, revealed wide variance between perceptions of the problem held by patients and technicians. In 1968, 21 Easthouse reported v a r i a t i o n s i n observations regarding patient concerns and supportive nursing care as perceived by future home d i a l y s i s patients and t h e i r nurses. SOURCES OF PATIENT INFORMATION Health professionals generally regard the o f f i c i a l health agencies as appropriate places f o r i n d i v i d u a l s to receive treatment and to obtain information. There i s a tendency for them to underplay f o l k medicine and f o l k p r a c t i t i o n e r s . Mechanic (1968) reported that much to the dismay of the health p r o f e s s i o n a l s , the lay person often seeks assistance for a i l -ments from f o l k p r a c t i t i o n e r s who provide information r e l a t e d to what the patient wants to know. The professionals seem to hold discrepant views on what sources patients use or need to use to acquire health information. P r a t t , S e l i g -man and Reader (1957) reported that while physicians seemed to expect patients to be knowledgeable about t h e i r i l l n e s s they did not always provide them with f u l l information. Supposedly, t h i s was because patients were not aggressive i n t h e i r demands for information, but i t overlooked an unformulated, l a t e n t desire f o r more information among the majority of patients. Problems may a r i s e regarding f u l l use of o f f i c i a l informa-t i o n sources i f the physician expects the patients to come prepared and the patients expect the physicians to provide a l l the information needed to deal with health problems. The growth of health r e l a t e d magazines seems to r e f l e c t a need f o r information and i s i n keeping with observations by E l l i s (1964) that 22 diabetics had received information from newspapers, magazines, radio, t e l e v i s i o n and pamphlets. Feldman (1966), discovered that most people nationwide learned about the warning signs of common diseases and when to seek medical services from the mass media. Health professionals were c i t e d as the prime sources of information by l e s s than ten per cent. The majority of physicians surveyed supported the r o l e of the mass media i n educating patients. Wadsworth (1970) noted that d i a b e t i c patients obtained most of t h e i r health information from the doctor and p r i n t e d material. Cardiac patients studied by Robinson (1974) more frequently used information gained from personal experiences. In summary, most studies treat patient education from the pers-pective of the health p r o f e s s i o n a l . Understanding of the patient's perspective and whether i t i s congruent with the views held by health professionals has received scant a t t e n t i o n . A comparison of information a v a i l a b l e to the patient with information he f e e l s he needs, and where he looks for a d d i t i o n a l information has also received i n s u f f i c i e n t exploration. CHAPTER I I I METHODOLOGY The data for t h i s study were gathered between July and November 1971 by means of a structured interview with patients on home hemodialysis and with s t a f f involved i n patient t r a i n i n g programs at three h o s p i t a l s i n B r i t i s h Columbia. Hospital records were reviewed to obtain data on medical treatment. POPULATION The population for t h i s study consisted of a l l of the 52 home hemodialysis patients registered at the Royal Jubilee H o s p i t a l , St. Paul's Hospital and The Vancouver General H o s p i t a l . These were the only renal units with home hemodialysis programs i n the province. C r i t e r i a used to sele c t the patients were: (1) a b i l i t y to speak and comprehend English, and (2) a b i l i t y to communicate with the i n v e s t i -gator, that i s , no evidence of severe psychological i l l n e s s . Of the o r i g i n a l 52 patients selected, three died before interviews could be conducted; two refused to p a r t i c i p a t e because of previous involvement as research subjects and expressed resentment of the psychological work-up done p r i o r to admission to the hemodialysis program; two were too i l l to be interviewed and one had already been pretested which excluded him from :the population. This l e f t a research population of 44 patients. Thirty-two s t a f f members were a c t i v e l y involved i n the home hemodialysis programs from which the patients had been selected. These 23 24 included 13 reg i s t e r e d nurses, eight technicians, f i v e physicians, three d i e t i t i a n s and three s o c i a l workers. Twenty-nine of the 32 s t a f f members agreed to p a r t i c i p a t e i n the survey. Three who were no longer a c t i v e l y involved i n the renal program were included because t h e i r replacements had not had an opportunity to know the home hemodialysis p a t i e n t s . Two physicians and a technician were excluded a f t e r they repeatedly f a i l e d to keep t h e i r appointments with the i n v e s t i g a t o r . DEVELOPMENT OF THE INSTRUMENT The interview schedule was designed to measure the perceptions of both patients and s t a f f regarding the patient's l e v e l of health knowledge, learning needs, socio-emotional Concerns, the number of ac t u a l and preferred information sources used and to evaluate the patient's preparation and hook-up s k i l l s . A discussion of each s e c t i o n follows. Knowledge Component This was based on information about health practices from the l i t e r a t u r e . Two ren a l nurse experts and a nephrologist evaluated the appropriateness of the c l i n i c a l content included. In item s e l e c t i o n the facts and behaviors chosen were considered basic to measure a safe l e v e l of p r a c t i c e by the renal patients. A t e s t of 48 questions was constructed to assess knowledge about various aspects of the management of chronic kidney f a i l u r e and mainten-ance d i a l y s i s . Most questions had several possible answers (Appendix D, Part B). A four-point scale was used to score the accuracy of responses to these 48 questions. Incorrect answers were scored "0"; and a response 25 c o r r e c t l y i n t e g r a t i n g several concepts as "3," with the maximum possible score of 300. Three c l i n i c a l nursing s p e c i a l i s t s , two of whom had re n a l nursing backgrounds, judged the weighting of responses. Congruence on judgments between the judges and the i n v e s t i g a t o r was 95 per cent when the three judges and the i n v e s t i g a t o r independently scored answers to randomly selected questions. Learning Needs Component Learning needs were operationalized as the number of items which a respondent stated that he believed a person on home hemodialysis might want to know about renal f a i l u r e and d i a l y s i s . In addition, two open-ended questions provided an opportunity f o r patients to i d e n t i f y other issues or problems not otherwise included (Appendix B, Part C). Socio-emotional Concerns Twenty-two statements r e f l e c t i n g r e a l l i f e problems were selected from contacts with d i a l y s i s patients and from research studies (Shea et a l . , 1965; Wright et a l . , 1966; Shambaugh et a l . , 1967; Aydelotte, 1967; Abram, 1968, Easthouse, 1968; De-Nour et a l . , 1968; Short and Wilson, 1969; Tuckman, 1970 and Ebra and Toth, 1972). These statements dealt with such problems as: a l t e r e d l i f e s t y l e s due to changes i n l i f e goals, jobs, income, residence, s o c i a l r e l a t i o n s h i p s with family members, friends and co-workers, the patient's reactions to h i s i l l n e s s and i t s treatment and changes i n roles (Appendix B, Part D). The patient was f i r s t asked to i d e n t i f y items that r e l a t e d to problems that he had encountered. The t o t a l number of such items constituted 26 the past Concerns score. He was then asked to review the remaining Con-cerns and to s e l e c t those items that were perceived to be presently of concern to him. The number of items selected made up the present Con-cerns score. The p o t e n t i a l maximum score i n ei t h e r category was 22. Two a d d i t i o n a l questions were included to i d e n t i f y other problems not s p e c i f i e d and to i d e n t i f y a d d i t i o n a l information the respondent would l i k e to have. Preparation and Hook-up S k i l l s A c h e c k - l i s t was developed to assess the patient's l e v e l of s k i l l i n the preparation of equipment and f o r the hook-up procedure (Appendix A, Part F ) . Since i t was both l o g i s t i c a l l y impossible and undesirable f o r patients to a c t u a l l y perform these a c t i v i t i e s , a simulated p e r f o r -mance of the two procedures was adopted. By using h i s own d i a l y s i s equip-ment, the patient was asked to l i s t and describe what he would do i n order to prepare the equipment and to complete the hook-up procedure. The pre-paration and hook-up s k i l l score consisted of the t o t a l number of correct steps that the patient indicated that he would do to complete two pro-cedures. The maximum score obtainable was 52. Information Sources Each respondent was asked to i d e n t i f y sources used to obtain i n -formation r e l a t e d to present knowledge and to past concerns. With respect to learning needs and present concerns, the respondent was asked to i d e n t i f y from which source he would prefer to obtain information. Four types of information indices were established to in d i c a t e 'actual' and 'preferred' sources. The 'actual' information source score 27 for knowledge items was the t o t a l number of sources a c t u a l l y used as r e -ported by respondents with a t o t a l p ossible score of 624 (13 sources x 48 questions = 624). The 'actual' information source score f o r past Concerns was the t o t a l number of sources from which the respondent had obtained information on how to solve past Concerns. The maximum possible score was 286 (13 sources x 22 Concerns = 286). The 'preferred' information source score for learning needs was the t o t a l number of sources the respondent would l i k e to use. The max-imum possible score was 715 (13 sources x 55 questions = 715) . The 'pre-f e r r e d ' information source score f o r present Concerns was the t o t a l number of sources the respondent would l i k e to use to obtain information needed to solve present problems. The t o t a l p ossible score was 286 (13 sources x 22 Concerns = 286)'. Internal-External Control of Reinforcement Scale The Internal-External Scale assesses b e l i e f s about c o n t r o l exerted on the i n d i v i d u a l from i n t e r n a l or external sources (Rotter, 1966). This scale measures whether a person perceives reward or r e i n -forcement, as being dependent or independent upon h i s own behavior and contains 23 sets of statements. The range of scores i s from 0 to 23 and a high score i n d i c a t e s the degree of external c o n t r o l perceived by the respondent (Appendix C). Blishen's (1967) Occupational Rating Scale (Blishen Scale) The B l i s h e n Occupational Rating Scale was used to measure s o c i a l status. Scores range from a low of 25 to 76 f o r the more prestigous occupations. 28 Personal Data  Patients Personal data c o l l e c t e d from the patient included those socio-economic variables i d e n t i f i e d i n the review of the l i t e r a t u r e as being r e l a t e d to a patient's knowledge of h i s health problem. The variables used i n t h i s study were sex, age, m a r i t a l status, number of c h i l d r e n , years of school, country of b i r t h , employment, s o c i a l status, health status, experience with i l l n e s s and distance of residence from the ren a l unit (Appendix B, P a r t A - l ) , In addition, data were c o l l e c t e d r e l a t i n g to health status, i n -cluding previous methods of treatment, time treated f o r renal f a i l u r e by a l l methods of treatment i n c l u d i n g home hemodialysis, and duration of Home D i a l y s i s Training Program. St a f f Data c o l l e c t e d from the s t a f f included b i o g r a p h i c a l character-i s t i c s ; t h e i r estimates of what the patient knew and wanted to know; estimates of the patient's past and present socio-emotional Concerns; i d e n t i f i c a t i o n of the information sources used or preferred by patients and a r a t i n g of s k i l l i n the preparation of the Drake-Willock and K i i l d i a l y z e r i n the completion of the hook-up procedure. In the l a t t e r case, ratings were assigned on a seven point scale 'extremely we l l ' to 'extremely poor' (Appendix B). In completing the Internal-External Control of Reinforcement Scale the s t a f f were asked to present t h e i r own rea c t i o n to the 29 items i n the scale (Appendix C) (Table 2). 29 TABLE 2 Biographical and Information-seeking Variables Biographical Patients S t a f f 1. Sex 1. Sex 2. Age 2. Age 3. M a r i t a l Status 3. M a r i t a l Status 4. Number of Children 4. Location of P r o f e s s i o n a l Education 5. Number of Years of School 5. A d d i t i o n a l General Education 6. Country of B i r t h 6. Country of B i r t h 7. Distance from Renal Unit 7. Length of Involvement i n Home Hemodialysis 8. Length of Treatment by Home 8. Teaching P a r t i c i p a t i o n i n Home Hemodialysis Hemodialysis 9. Length of Home D i a l y s i s Training 9. Weekly Teaching Contact (in hours) Program 10. Length of Treatment by A l l Methods 10. Length of Residency Training 11. Previous Methods of Treatment 11. Length of Time i n Pr a c t i c e 12. Internal-External Control of 12. Internal-External Control of Reinforcement Scale Reinforcement Scale 13. Blishen Occupational Rating Scale 13. Blishen Occupational Rating Scale 14. Employment Status (employed or Unemployed) 15. Occupation P r i o r to I l l n e s s 16. Occupational Change Due to I l l n e s s Information-Seeking St a f f Estimates of Patients' Patients Achievements 1. Knowledge Score 1. Knowledge 2. Learning Needs Score 2. Learning Needs 3. Past Concerns Score 3. Past Concerns 4. Present Concerns Score 4. Present Concerns 5. Actual-Information-Source Score 5. Number of Information Sources used for Knowledge Items fo r Knowledge Items 6. Actual-Information-Source Score 6. Number of Information Sources used f o r Past Concerns f o r Past Concerns 7. Preferred-Information-Source 7. Number of Information Sources used Score f o r Learning Needs for Learning Needs 8. Preferred-Information-Source 8. Number of Information Sources used Score for Present Concerns for Present Concerns 9. Preparation and Hook-up S k i l l 9. Preparation and hookup procedures Score 30 VALIDITY AND RELIABILITY No formal attempt was made to e s t a b l i s h the t e s t - r e t e s t r e l i a b i l i t y of t h i s instrument. I t can be assumed to have face v a l i d i t y since a l l 48 knowledge questions and both simulated performance items r e f e r to d i f f e r -ent aspects of the general management of the r e n a l patient (Fox, 1966). Content v a l i d i t y can be argued because "the instrument measures what i t seeks to measure because of the r a t i o n a l and empirical sources of the actual content" (Fox, 1966; p. 236). Since a p i l o t study was not possible due to the small number of persons on home hemodialysis, a pretest was arranged with f i v e in-centre hemodialysis patients and four health p r o f e s s i o n a l s . ANALYSIS OF THE DATA Raw data were keypunched on cards for processing at The University of B r i t i s h Columbia Computing Centre. These data were computer analyzed using UBC Library Programs: *MVTAB, *TRIP, and BMD07M. Simple frequency and percentage d i s t r i b u t i o n s were used for the general c h a r a c t e r i s t i c s of the population with means, standard deviations and ranges calculated where appropriate. Pearson product-moment c o r r e l a -t i o n (r) was applied to the data. The Chi-Square s t a t i s t i c was calculated at the .05 and .01 l e v e l of s i g n i f i c a n c e to t e s t differences i n the d i s -t r i b u t i o n s between ranges on selected c h a r a c t e r i s t i c s . T^Values were used to analyze data from two independent samples. One-way Analysis of Variance was used to t e s t differences among non-continuous data. CHAPTER IV THE PATIENTS In t h i s chapter patients are described according to personal c h a r a c t e r i s t i c s including psychological factors such as l i f e s t y l e Concerns; knowledge about health problems; needs for a d d i t i o n a l i n -formation and sources of information. The r e l a t i o n s h i p s among measures of patient c h a r a c t e r i s t i c s are then discussed and the findings are compared with those of previous research about patient education. BIOGRAPHICAL CHARACTERISTICS Age and Sex Of the 44 patients i n the study 26 were male (59%)and 18 were female (41%). That there are more male than females on home hemo-d i a l y s i s may be due to the higher motivation of men r e f l e c t i n g t h e i r desire to maintain t h e i r breadwinner r o l e . Eighty per cent of the patients were 35 years or older. The mean age was 45.3 years with a range from 26 to 60 years of age. The mean age for males was 44.2 and f o r females 38.3 (Figure 1) (Table 8, p. 45). M a r i t a l and Family Status The majority of the patients (88.64%) were married. Three were si n g l e and two were separated or widowed. Most of the patients (81.82%) 31 32 50 Number 40 of Patients 30 -I 20 10 0 IZEL in JiLJQ- XE1 20-29 30-39 40-49 50-59 60> Figure 1. Age and Sex 33 had one or more c h i l d r e n . Twenty-eight (63.64%) had one to three while eight (18.18%) had four to s i x c h i l d r e n (Figure 2). Years of Schooling, Country of B i r t h A majority of the patients (70.46%) had completed nine or more years of school, and seventeen (38.64%) had completed 12 or more years. Of the four patients who had attended u n i v e r s i t y , three had received a degree. Only two of the patients were f u n c t i o n a l l y i l l i t e r a t e having had less than f i v e years of schooling (Figure 3). The mean years of school completion was 10.4 with a range of 4 to 19 years (Table 8, p. 4 5 ) . Thirty-one patients (70.45%) were born i n Canada, the remaining 13 (29.55%) were foreign born. Occupational Categories Eight patients (18.18%) were employed as owners, managers, pro-f e s s i o n a l or t e c h n i c a l workers. Eighteen (40.91%) were i n c l e r i c a l , sales or service occupations. Of the males, seven (15.91%) were employed i n farming, mining, lumbering, and other manual labor, and two were pro-cess workers (Figure 4). Of the 18 female patients, 9 (20.45%) were housewives (Table 3). Blishen Occupational Rating Scale (Blishen Scale) S o c i a l status scores, as measured by the B l i s h e n Occupational Rating Scale (1967), ranged from a minimum of 25 to a maximum of 76 (mean 40.0). Thirty-nine per cent of the patients had scores of more than 39, while 41 per cent had scores of 38 or l e s s . Of the l a t t e r , 18 per cent had scores of 30 or l e s s . In 1961 the mean on the Blishen Scale f o r the Number 50 40 of Patients 30 20 0 J Z L J Z L Figure 2. Number of Children 35 Number of Patients 50 40 30 20 10 £1 D 8 9 10 11 12 Years of Schooling 13 Some Univ e r s i t y College Degree Figure 3. Educational Background 36 Number of Patients 50 40 30 20 10 Owners, mgr.] prof.,tech [ C l e r i c a l , s a l e s , s e r v i c e , transport., communic'n Farming, mining,etc. P r o c e s s o r s ! Figure 4. Occupational Background TABLE 3 Patient Occupation and Occupational Status by Sex T o t a l Male Female Blishen Occupational Rating Scale Means Occupation N % N % N % Total Male Female Owners, managers, pro f e s s i o n a l , t e c h n i c a l 8 18.18 5 11.36 3 6.82 49.6 47.6 53.0 C l e r i c a l , s a l e s , service, transporta-t i o n , communication, recreation 18 40.91 12 27.27 6 13.64 36.7 35.5 39.0 Farming, mining, lumbering, f i s h i n g , laboring 7 15.91 7 15.9 0 .00 35.3 35.3 0.0 Craftsmen, process workers 2 4.55 2 4.55 0 .00 49.5 49.5 0.0 Housewives 9 20.45 0 .00 9 20.45 ' 0.0 0.0 0.0 Tot a l 44 100.00 26 59.09 18 40.81* * Discrepancies due to rounding procedures. 38 B r i t i s h Columbia Labor Force were 38.72 (Blishen, 1967; p. 53). While the patients are f a i r l y evenly divided between the high and low scoring occupations, eight patients f e l l into the bottom d e c i l e . Twenty per cent of the women were housewives and, therefore, not scored on the Blishen scale (Figure 5) (Table 3, p. 37). Employment Status and Occupational Changes At the time of the interviews, 31 patients (70.45%) were employed and 13 (29.55%) were unemployed. Twenty-eight patients (63.64%) were employed i n the same occupation that they had held p r i o r to t h e i r i l l n e s s while 16 (36.36%) had changed occupations (Table 4). TABLE 4 Categories of Patient Employment and Occupational Status by Sex T o t a l Male Female Variables N % N % N % Employed 31 70.45 18 40. 91 13 29. 55 Unemployed 13 29.55 8 18. 18 5 11. 36 T o t a l 44-. . 100.00 26 59. 09 18 40. 91 Occupational Change due to I l l n e s s Same occupation 28 63.64 16 36. 36 12 27. 27 D i f f e r e n t occupation 16 36.36 10 22. 73 6 13. 64 T o t a l 44 100.00 26 59. 09 18 40. 91 Distance from Renal Units Patients l i v e d i n 32 centres throughout B r i t i s h Columbia. The mean distance from renal units was 143.5 miles with the range from 1 to 876. 50 Number o f 40 Patients 30 L 20 10 M F M M F IL 25-34 35-44 45-54 55-64 65-74 Figure 5. Blishen Occupational Ratings 40 The factor of distance i s s i g n i f i c a n t because i t i s r e l a t e d to the time and the cost involved i n getting to the renal u n i t . P r o f e s s i o n a l resources are not as e a s i l y a v a i l a b l e to patients l i v i n g f a r from the renal unit as they are to those who l i v e c l o s e r . Obviously patients l i v i n g at a distance would have to r e l y on t h e i r own resources, the de-gree of r e l i a n c e increasing with the distance (Figure 6). HEALTH AND TREATMENT CHARACTERISTICS Home Hemodialysis Treatment History The average length of treatment on home hemodialysis was 1.07 years with a range of l e s s than one year to 2.4 years. Fifty-two per cent of the patients had been on t h i s form of therapy f o r more than a year, and only three for more than two years (Table 8, p. 45). Length of Home Hemodialysis Training Program The length of the t r a i n i n g program varied from one h o s p i t a l to another, ranging from one to three months. The mean length of t r a i n i n g received by the patients was 46.6 days with the range being 25 to 89 days. The majority of the patients (83%) had more than 31 days t r a i n -ing (Table 5). The average number of t r a i n i n g days varies among the ho s p i t a l s and by sex. Royal Jubilee H o s p i t a l showed the greatest variance by sex with female patients r e c e i v i n g an average of 24.0 more days of t r a i n i n g than did the males. In s p i t e of the female patients from the Royal Jubilee Hospital i n d i c a t i n g that t h e i r spouses were responsible f o r a l l aspects of te c h n i c a l management. St. Paul's Hospital showed more average Figure 6. Hap of B r i c i s h Columbia Location of Renal Units and Home Communities of Patients 42 t r a i n i n g days for men than women which i s due to four men with over 50 t r a i n i n g days who admitted to d i f f i c u l t y i n accpeting the fac t that they were c h r o n i c a l l y i l l , reported deviations from the prescribed d i e t , medications and d i a l y s i s routines. The differences i n the number of t r a i n i n g days are s t a t i s t i c a l l y s i g n i f i c a n t at the .05 l e v e l (Table 5). TABLE 5 Average Number of Training Days by Hospital and by Sex Mean Location of Program (Hospital) Ov e r a l l Male Female Royal Juiblee (RJH) 54.25 42.24 66.25 St. Paul's (SPH) 45.93 54.62 46.28 Vancouver General (VGH) 44.28 42.78 47.28 Tot a l 46.65 43.57 51.11 x 2 = 8.34, df = 2, p < .05 Treatment History by A l l Methods The mean length of time spent i n treatment across a l l methods for chronic kidney f a i l u r e was 2.5 years with a range of les s than 1 to 17.0 years. Male patients had been i n treatment from 5 months to 17 years (mean 2.4 years) while treatment f o r females ranged from 19 days to 16 years (mean 2.7 years) of treatment (Table 8, p. 45). 43 Previous Methods of Treatment Four major categories of treatment f o r kidney f a i l u r e are recognized. These are conservative management with d i e t and drug therapy, in-centre and home pe r i t o n e a l d i a l y s i s , in-centre and home hemodialysis and kidney transplantation. Sixty-four per cent of the patients had received three or more methods of treatment while 36 per cent had received 1 to 2 methods. The number of methods of treatment ranged from 1 to 4 (mean 2.7) (Table 6). TABLE 6 D i s t r i b u t i o n of Patients by T o t a l Number of Types of Treatment by Sex To t a l Number Types of Treatment T o t a l Male Female (cumulative) N % N c I N I Single only 1 2. 27 0 .00 1 2 .27 Two methods 15 34. 09 6 13 .65 9 20 .45 Three methods 24 54. 55 16 36 .36 8 18 .18 Four methods or more 4 9. 09 4 9 .09 0 .00 T o t a l 44 100. 00 26 59 .10 18 40 .90* * Discrepancies due to rounding procedures. Nature of Previous Treatments The majority of the patients had been treated with in-centre hemodialysis (97.73%), conservative or s u r g i c a l management (90.91%) and in-centre p e r i t o n e a l d i a l y s i s (72.73%). While male patients had received a l l forms of treatment, females had not been treated with home per i t o n e a l d i a l y s i s or transplantations (Table 7). 44 TABLE 7 Patients by Nature of Previous Treatments by Sex T o t a l Male Female Previous Treatment N % N % N % In-centre hemodialysis 43 97.73 26 59.09 17 33.64 In-centre p e r i t o n e a l d i a l y s i s 32 72.73 20 45.45 12 27.27 Home pe r i t o n e a l d i a l y s i s 2 4.55 2 4.55 0 .00 Transplantation 1 2.27 1 2.27 0 .00 Other: conservative, and/or surgery 40 90.91 26 59.09 14 31.82 These percentages exceed 100 because patients reported more than one method of treatment. PSYCHOLOGICAL FACTORS Internal-External Control of Reinforcement Scale A high score on the Internal-External c o n t r o l of Reinforcement Scale indicates that an i n d i v i d u a l perceives h i s l i f e events as being regulated by sources beyond h i s c o n t r o l while a low score indicates an i n d i v i d u a l sees himself as i n c o n t r o l of h i s own fate and l i f e events. T h i r t y - f o u r patients completed this Scale. The mean score f o r males was marginally lower than that f o r females which suggests a tendency on the part of females to perceive themselves as being l e s s i n c o n t r o l of t h e i r behavior (Table 8). This higher i n t e r n a l o r i e n t a t i o n of males contradicts Goldstein and Reznikoff (1971) who noted that male home hemodialysis patients are s i g n i f i c a n t l y TABLE 8 Patient C h a r a c t e r i s t i c s : Biographical Variables No. of Subjects Possible Range Observed Range Mean Standard Deviation Male Mean Female 1. Age i n years 44 19-65 25-60 45.3 10.1 44.2 48.3 ** 2. No. of c h i l d r e n 44 0-? 0-6 2.3 1.6 2.3 2.3 ** 3. Years of school 44 0-22 4-19 10.4 3.1 10.1 11.2 ** 4. HHD treatment i n years 44 0-10 <l-2.4 1.0 0.6 1.1 1.0 ** 5. Duration HDTP i n days 44 30-90 25-89 46.6 11.4 43.5 51.1 * 6. Tota l treatment i n years 44 0-? <1-17.07 2.5 3.6 2.4 2.7 * 7. Previous treatment methods 44 0-4 1-4 2.7 0.6 3.3 3.3 ** 8. Distance to renal unit i n miles 44 0-1000+ 1-876 143.5 214.7 122.1 174.2 9. Internal-External Control of Reinforcement Scale 36 0-23 3 0-18 6.4 4.7 5.6 7.6 ** 10. Blishen Occupational Rating Scale 35 28-76 a 28-75 40.0 11.6 38.8 43.6 ** a See p.27. * Male-female differences s t a t i s t i c a l l y s i g n i f i c a n t . ** Male-female differences not s t a t i s t i c a l l y s i g n i f i c a n t . 46 more external i n o r i e n t a t i o n (9.5) than a co n t r o l group of males with minor medical conditions (7.0). I n t e r n a l l y oriented patients may recognize that i n order to sur-v i v e they must assume greater r e s p o n s i b i l i t y f o r the management of t h e i r condition and s u c c e s s f u l l y coping with i t may accelerate the return of a sense of mastery. Socio-emotional Concerns: Past and Present In order to determine how patients ranked the problems they en-countered they were asked to choose from 22 possible items that had been already faced and dealt with, and those that were of current Concern. The patients i d e n t i f i e d 5.4 past and 1.9 present Concerns (Table 17, p.71). Past Concerns The major problems encountered i n the past were ph y s i c a l symptoms of i l l n e s s and change i n l i f e goals or plans. Of le s s concern but s t i l l important had been an i n a b i l i t y to carry out t h e i r r o l e of breadwinner or housewife, dependency on treatment and acceptance of chronic i l l n e s s . Change i n jobs, body image, family r e l a t i o n s , residence, s o c i a l r e l a t i o n s with f r i e n d s , and dying, had been of l e a s t importance. Male patients i d e n t i f i e d more problems than did female patients. The f i v e problems i d e n t i f i e d by most males suggests that they had been concerned about treatment and acceptance of i l l n e s s , l i f e goals, and occu-pat i o n a l and economic problems. Thus, the focus of the male Concerns seems to be i n keeping with items re l a t e d to the t r a d i t i o n a l male r o l e of breadwinner. Female patients indicated more concern about symptomatology 47 and dependency r e l a t e d to i l l n e s s and treatment. The focus of the female Concerns may r e l a t e to the feminine r o l e of housewife and mother. Present Concerns Patients noted that t h e i r present Concerns were rel a t e d to depres-sion, i n a b i l i t y to carry out the worker r o l e and change l i f e goals. Of les s concern but s t i l l important are problems r e l a t e d to i n a b i l i t y to carry out the marriage r o l e , dependency on treatment and i n a b i l i t y to work. Prob-lems recognized but not of p a r t i c u l a r concern were change i n s o c i a l r e l a t i o n s with f r i e n d s , reduced s o c i a l a c t i v i t y , physical symptoms of i l l n e s s , change i n f a m i l i a l r e l a t i o n s , acceptance of c h r o n i c i t y and f e e l i n g s about the un-known. Two items, dying and change i n residence, were of no immediate con-cern to anyone. The fact that dying was not recognized by the patients may be due to denial as noted by Shea et a l . , (1965), Wright et a l . , (1966) and De-Nour et a l . , (1968). Male patients did not consider change i n s o c i a l r e l a t i o n s with friends and co-workers, change i n f a m i l i a l r e l a t i o n s or acceptance of chronic i l l n e s s as current Concerns. Female patients expressed no concern about change i n jobs, d i e t regimen and physical symptoms of i l l n e s s . The present Concerns of males centred on depression, occupational and economic issues whereas females noted depression and occupational, economic or treatment problems (Table 9). Some of the patient Concerns i d e n t i f i e d i n t h i s study have been noted by others although with s i m i l a r but not i d e n t i c a l conclusions. The s i g n i f i c a n t variance i s i n the order of Concerns. Shulman and Percy (1974) noted depression, impaired spouse r e l a t i o n s h i p s , impaired occupa-t i o n and l e i s u r e a c t i v i t i e s , f i n a n c i a l problems and phy s i c a l and psycho-s o c i a l symptoms. Holcomb and Macdonald (1973) reported patient concerns TABLE 9 Socio-emotional Concerns: Past and Present as I d e n t i f i e d by Male and Female Patients Total Past Total Present T o t a l Male Female Total Male Female Concern N/44 % N/26 % N/18 % N/44 % N/26 % N/18 % P h y s i c a l symptoms of i l l n e s s 22 50.00* 14 31.82 8 18.18 1 2.77 1 2.27 0 .00 Change i n l i f e goals 19 43.18 12 27.27 7 15.90 8 18.18 5 11.36 3 6.82 I n a b i l i t y to carry out worker role 17 38.64' 12 27.27 5 11.36 9 20.45 3 6.81 6 13.63 Dependency on treatment 16 36.36 9 20.45 7 15.90 7 15.90 1 2.27 6 13.63 I n a b i l i t y to work 16 36.36 10 22.73 6 13.63 7 15.90 6 13.63 1 2.27 Acceptance of ch r o n i c i t y 15 34.09 10 22.73 5 11.36 1 2.27 0 .00 1 2.27 F i n a n c i a l problems 14 31.82 10 22.73 4 9.09 5 11.36 3 6.81 2 4.55 Physical symptoms from treatment 14 31.82 8 18.18 6 13.63 4 9.09 3 6.81 1 2.27 Depression 14 31.82 8 18.18 6 13.63 10 22.73 7 15.90 3 6.81 Diet regimen 13 29.54 9 20.45 4 9.09 3 6.81 3 6.81 0 .00 Reduction i n income 12 22.27 9 20.45 3 6.81 4 9.09 3 6.81 1 2.27 I n a b i l i t y to carry out marriage r o l e 9 20.45 5 11.36 4 9.09 6 13.63 3 6.81 3 6.81 Cannula care problems 9 20.45 6 13.63 3 6.81 3 6.81 1 2.27 2 4.55 Reduced s o c i a l a c t i v i t y 9 20.45 6 13.63 3 6.81 2 4.55 1 2.27 1 2.27 Mental state 8 18.18 5 11.36 3 6.81 4 9.09 1 2.27 3 6.81 Feelings about the unknown 8 18.18 4 9.09 4 9.09 1 2.27 0 .00 1 2.27 Change i n jobs 7 15.90 3 6.81 4 9.09 4 9.09 4 9.09 0 .00 Change i n body image 7 15.90 3 6.81 4 9.09 4 9.09 2 4.54 2 4.54 Change i n family r e l a t i o n s 6 13.63 4 9.09 2 4.54 1 2.27 0 .00 1 2.27 Change i n residence 5 11.36 1 2.27 4 9.09 0 .00 0 .00 0 .00 Change i n s o c i a l r e l a t i o n s with f r i e n d s , co-workers 5 11.36 4 9.09 1 2.27 2 4.54 0 .00 2 4.54 Dying 4 9.09 4 9.09 0 .00 0 .00 0 .00 0 .00 * Discrepancies due to rounding procedure. 4> 00 49 over health, depression, not meeting l i f e goals and a small number wish-ing that they were dead. In contrast, Easthouse (1968, p. 73) reported that patients were concerned about f i n a n c i a l d i f f i c u l t i e s and d i s r u p t i o n of plan of l i f e , previous experiences, the unknown, phys i c a l state and discomfort, death and loss of control of the environment. Aydelotte (1967, p. 8) stated that patients and t h e i r family members were concerned p r i m a r i l y about: symptoms of i l l n e s s or those a r i s i n g from e f f e c t of therapy, acceptance of chronic i l l n e s s and dependency on treatment, change i n r o l e or i n a b i l i t y to perform a r o l e . It appears that there i s some differe n c e i n ranking and i n the Concerns i d e n t i f i e d . In t h i s study, however, more Concerns were looked at. KNOWLEDGE AND SKILL Level of Knowledge The knowledge index i d e n t i f i e d the extent of the patient's know-ledge about the cause, treatment and management of home hemodialysis. The knowledge scores ranged from 53 to 155 out of a possible 300 with a mean score of 113.6. The mean score for females was 115.1 and for males 112.7 (Table 17, p. 71). Patients made a t o t a l of 264 i n c o r r e c t statements about the causes, consequences and management of renal f a i l u r e and they provided 173 "don't know" responses (Table 10). While many gave some wrong answers those with the highest l e v e l of knowledge gave the fewest. The four patients who received the highest knowledge scores provided a t o t a l of 23 inco r r e c t statements and 6 "don't know" responses. The four patients with the lowest knowledge scores gave 74 inco r r e c t answers and 45 "don't know" responses. The patient who TABLE 10 Misinformation about Kidney Failure and Dialysis 50 Question Incorrect Don't Know N %* N %* Chronic Kidney Failure 1. Cause elevated B.P. 5 11.36 14 • 31.82 2. Evidence of high salt 5 11.36 2,;,' 4.55 3. Cause of high salt 10 22.72 11-^  25.00 4. Reasons to limit weight 3 6.81 1 2.27 5. Uremia 3 6.81 15 34.09 6. Symptoms of uremia iy 4. •' 4.55 16 36.36 Sub Total 28 J2 Diet 1. Cooking without salt 0 .00 2 7.69 2. Salt substitutes 0 .00 9 20.45 3. Protein intake 8 18.18 2 • 7.69 4. Mineral intake 9 20.45 1 2.27 5. Fluid/water intake 5 11.36 0 .00 6. Caloric intake 8 18.18 5 11.36 7. "Free" foods 9 20.45 20 45.45 Sub Total 39 39 Medications 1. Reasons for heparin 0 .00 0 .00 ,2. Precautions with heparin 2 4.55 0 .00 3. Pxasons for imferon 5 11.36 0 .00 Sub Total _7 _0 Cannula 1. Major cannula problem 0 .00 1 2.27 2. Prevention - cannula removal 3 6.82 0 .00 3. Prevention clotting 6 13.63 0 .00 4. Detection - clotting 25 56.82 0 .00 5. Treatment clotted shunt 2 4.55 0 .00 6. Infection - signs 1 2.27 1 2.27 7. Protection of limb 3 6.81 0 .00 8. Emergency treatment 0 .00 0 .00 Sub Total 40 _2 Dialysis .00 1. Function - kidney machine 0 .00 0 2. Machine tests 0 .00 3 6.81 3. Dialysate samples 20 45.45 3 6.81 4. Reason - chloride test 8 18.18 0 .00 5. Treat., varying chloride results 26 59.09 1 2.27 6. Conductivity meter 0 .00 7 15.90 7. High venous pressure alarm 18 40.91 0 .00 8. Low venous pressure alarm 7 15.90 0 .00 9. Self monitoring 7 15.90 0 .00 10. Use of air rinse pump 5 11.36 0 .00 11. Drop in B.P. during dialysis 1 2.27 3 6.81 12. Causes of B.P. change 4 9.09 6 13.63 13. Treatment post-dialysis B.P. 3 6.81 o 4.55 14. Treatment missed dialyses 4 9.09 1 2.27 15. Identification - membrane rupture 5 11.36 0 .00 16. Treatment - membrane rupture 0 .00 0 .00 Sub Total 108 26 Medical Problems 1. Sensory foot changes 5 11.36 21 47.73 2. Itchy skin 7 15.90 8 18.18 3. Venospasm 0 .00 6 13.63 4. Fever/chills 11 25.00 3 6.81 5. Defective calcium absorption 3 6.81 12 27.27 Sub Total 26 50 Care of Dialyzer (technical) 1. Storage time 13 29.55 0 .00 2. Reasons for storing 0 .00 0 .00 3. Use of cellophane 3 6.81 0 .00 Sub Total 16 0 GRAND TOTAL 264 176 Discrepancies due to rounding procedure. * These percentages exceed 100 because patients reported more than one er r o r . Note: For exact wording of each topic, see Appendix B-Part B. . 51 obtained the highest knowledge score answered one question i n c o r r e c t l y and gave two "don't know" responses, while the patient who had the lowest score gave 7 wrong answers and 15 "don't know" r e p l i e s . While patients were well-informed i n general, about renal f a i l -ure, 70 per cent did not know the causes and symptoms of uremia, 31.8 per cent d i d not know the causes of elevated blood pressure, and 48 per cent gave e i t h e r an i n c o r r e c t or "don't know" answer about what causes the r i s e i n the s a l t l e v e l i n the blood (Table 10, p. 50). Although most patients were knowledgeable about the renal d i e t many held erroneous views about foods that could be eaten l i b e r a l l y and about the reasons for counting c a l o r i e s i n t h e i r d i e t . A small number did not know why s a l t substitutes had to be medically prescribed. Several gave i n c o r r e c t answers about the management of protein and s a l t intake (Table 10). A l l patients were f a m i l i a r to some degree with the emergency management of cannula separation and knew about the signs i n d i c a t i v e of a cannula i n f e c t i o n and ways to prevent the cannulas from coming out of t h e i r blood v e s s e l s . Less w e l l known was the i d e n t i f i c a t i o n and preven-ti o n of cannula c l o t t i n g . While most gave correct answers to the question dealing with the management of a c l o t t e d shunt, a small number reported unsafe p r a c t i c e s regarding the d e - c l o t t i n g procedure (Table 10). Although patients gave i n c o r r e c t responses to some questions about d i a l y s i s they were generally knowledgeable about the c r i t i c a l aspects of d i a l y s i s care. Over 40 per cent of the patients made i n c o r r e c t statements about taking a dialysate sample from the inflow hose for the chloride t e s t . 52 Many sa i d that they took the specimen from a c e r t a i n place because that was what they had been t o l d to do. This lack of knowledge may be traced back to the differences of opinion and v a r i a t i o n s i n p r a c t i c e among s t a f f members about the s p e c i f i c l o c a t i o n and reason f o r obtaining d i a l y s a t e samples. When seve r a l members of the same ren a l unit propose v a r i a t i o n s that are not demonstrably linked with l o g i c a l explanations, patient e r r o r tends to increase. Sixteen per cent of the patients did not know the purpose of the chloride test with a t h i r d of th i s group saying that i t measured the formaldehyde i n the kidney machine. While 30 patients knew how to deal with abnormal chloride l e v e l s , fourteen could not deal with i t c o r r e c t l y . Instead of repeating the chloride test many patients would proceed automatically with such trouble-shooting a c t i v i t i e s as adjusting d i a l y z e r parts, r e p a i r i n g the mixing unit or running extra s a l i n e r i n s e s . Patients also gave i n c o r r e c t answers about the venous pressure alarms and the self-monitoring procedures. While most were know-ledgeable about d i a l y z e r s t e r i l i z a t i o n procedures, 29.5 per cent were in c o r r e c t i n t h e i r estimates of the minimum time that formaldehyde could be l e f t i n the d i a l y z e r (Table 10, p. 50). Although some patients provided responses about managing medical problems that were i n c o r r e c t , they f e l t that they could cope with fever and/or c h i l l s , venospasm and skin i r r i t a t i o n s , but dealing with sensory changes i n feet was not understood (Table 10). In summary, while patients were generally knowledgeable about renal f a i l u r e and d i a l y s i s there were several i n c o r r e c t responses and they also indicated that they did not know the answers to a l l questions. The greatest number of wrong answers were given to the questions on d i a l y s i s . Patients also gave numerous erroneous or "don't know" r e p l i e s about dietary management, the causes of renal f a i l u r e and medical problems. This suggests that the s t a f f of renal units are not accomplishing the amount of learning they may think. A more c a r e f u l l y planned i n s t r u c t i o n program with adequate checks may a l l e v i a t e t h i s s i t u a t i o n . The areas of misinformation are documented i n Table 10 (p. 50). S p e c i f i c recommendations to deal with the problem are given i n the f i n a l chapter. Preparation and Hook-up A c t i v i t i e s The score f o r the preparation and hook-up s k i l l procedures was based on the correct i d e n t i f i c a t i o n of the 52 steps necessary to prepare for d i a l y s i s . Patient scores ranged from 12 to 36 with the mean score being 29.7 (Table 17, p. 71). While many of the patients did not carry out a l l of the steps they were confident they could manage the d i a l y s i s preparation procedures. Furthermore, they viewed themselves as adhering to the procedures pre-scr i b e d by the renal unit s t a f f . Less often reported by a l l patients were steps r e l a t e d to: drawing up the heparin, d i s p l a c i n g a i r i n the venopak, and checking the water pressure, flow meter, negative pressure or alarms (Figure 7) (Table 11). For three patients there was a discrepancy between t h e i r actual demonstrations and t h e i r verbal descriptions of the procedures. A l l three performed more steps c o r r e c t l y i n p r a c t i c e than they were able to state Dialyzer Preparation: Correct Sequence 54 1. Disconnect tubing 2. Turn water on 3. Turn power off 4. Raise kidney ( K i i l ) 5. Draw heparin up 6. Add heparin to N/S 7. Attach venopak 8. Displace a i r i n venopak 9. Attach blood tubing 10. Run N/S - venous tubing 11. C l i n i t e s t 12. Lower kidney 13. Attach concentrate l i n e 14. Set l i m i t s 15. Chloride test 16. Water pressure 17. Pump speed 18. Flow meter 19. Heparin pump 20. Hi-low temperature 21. Neg. pressure, Y-tubing 22. Alarm switch on 23. Dialyzer leak l i m i t 24. Power o f f alarm 25. Conductivity 26. Test a l l alarms 27. Uses check l i s t • 1 cm. 10% 10 20 30 40 50 60 70 80 90 100 Percentage of Patients Responding Correctly T o t a l number of responses = 582 Figure 7. Correct Responses for Simulated Dialyzer Preparation 55 TABLE 11 Patient Responses: Preparation of Drake-Willock and K i i l D i a l y z e r A c t i v i t y T o t a l N % * 1. Disconnect rubber tubing 35 79.55 2. Turn water on 38 86.36 3. Turn power off 39 88.64 4. Raise kidney ( K i i l ) 41 93.18 5. Draw heparin up 14 31.82 6. Add heparin to s a l i n e 35 79.55 7. Attach venopak 19 43.18 8. Displace a i r i n venopak 10 22.73 9. Attach blood tubing 20 45.45 10. Run s a l i n e i n t o venous blood tubing 41 93.18 11. C U n i t e s t 38 86.36 12. Lower kidney ( K i i l ) 25 56.82 13. Attach concentrate l i n e 39 88.64 14. Set l i m i t s 28 63.64 15. Chlorine t e s t 39 88.64 16. Water pressure 9 20.45 17. Pump speed 14 31.82 18. Flowmeter 6 13.63 19. Heparin pump 16 36.36 20. High/low temperatures 16 36.36 21. Negative pressure/Y-tubing 7 15.90 22. Alarm switch on 3 6.81 23. Di a l y z e r leak l i m i t 10 22.73 24. Power o f f alarm 7 15.90 25. Conductivity 17 38.64 26. Test a l l alarms 5 11.36 27. Use check l i s t 11 25.00 To t a l 582 * These percentages exceed 100 because patients than one step i n the procedure. reported more 56 v e r b a l l y . A l l but two patients indicated that even when i n a hurry, they did not omit any steps i n the preparation of the Drake-Willock and K i i l d i a l y z e r . Of those two patients, one stated that he tested the standard for every fourth d i a l y s i s ; the other took the c l i n i t e s t from the concentrate. While many patients stated that they would carry out a l l 25 steps of the hook-up procedure, several did not mention completing them a l l . The steps less often completed included: l a y i n g the shunt and cannulas on a s t e r i l e area, cleansing the cannula t i p s , taking blood specimens as necessary, taping the connections, safety checks of monitors and tubing and doing a bubble time (Figure 8) (Table 12). In view of the c r i t i c a l importance of the correct hook-up pro-cedures, renal unit s t a f f need to give more attention to i n s t r u c t i o n i n this area. Since t h i s involves s k i l l learning i t i s necessary to insure that the patient learns each component s k i l l and can then apply those s k i l l s independently. Some improvement i n th i s area of patient education i s c l e a r l y needed and suggestions towards e f f e c t i v e modifications are made i n the f i n a l chapter. Learning Needs The learning needs score consisted of the t o t a l number of items that patients wanted to know about re n a l f a i l u r e and d i a l y s i s . The mean learning needs score was 23.6 and a range from 44 to 56, with a mean score of 24.6 for males and 22.0 f o r females (Table 17, p. 71). Most patients i n d i c a t e d that they knew enough while some patients who were unable to a r t i c u l a t e s p e c i f i c needs stated that they wanted to 57 Hook-up Procedure: Correct Sequence 1. Dressing off shunt 2. Clean shunt & arm 3. Cannula, shunt on dressing 4. Clamp shunt 5. Remove tapes, connector 6. Blood specimen if necessary 7. Clean A-V cannula tips 8. Connect arterial cannula tubing 9. Tape connection 10. Blood into dialyzer tubing 11. Add heparin 12. Clamp A-V dialyzer lines 13. Connect venous line 14. Tape connection 15. Air check of tubing 16. Remove forceps, clamp venous cannula 17. Open arterial forceps, clamps 18. Tape cannula, blood lines 19. Dressing & kling on 20. Set monitoring line, limits 21. Set neg. pressure 22. Check monitors 23. Fix drip chamber 24. B.P. & weight 25. Bubble time 1 cm 1% 0 10 20 30 40 50 60 70 80 90 100 Percentage of Patients Responding Correctly Total number of responses = 597 Figure 8. Correct Responses for Simulated Hook-up Procedure 58 TABLE 12 Patient Responses: Completing Hook-up Procedure A c t i v i t y T o t a l N %* 1. Remove dressings from shunt 40 90.91 2. Clean shunt & arm using s t e r i l e technique 25 56.82 3. Lay cannula & shunt on s t e r i l e dressings 15 34.09 4. Clamp shunt 30 68.18 5. Remove tapes, t e f l o n connector 35 79.55 6. Blood specimen i f necessary 4 9.09 7. Clean t i p s of cannula, A-V 9 20.45 8. Connect a r t e r i a l cannula to d i a l y z e r a r t e r i a l tubing 40 • 90.91 9. Tape connection 5 11.36 10. Let d i a l y z e r & venous tubing f i l l with blood 39 88.64 11. Put heparin i n as blood enters d i a l y z e r 31 70.45 12. Clamp a r t e r i a l & venous d i a l y z e r l i n e s 36 81.82 13. Connect venous l i n e to venous d i a l y z e r 38 86.36 14. Tape connection 7 15.90 15. Check i f tubing free of a i r 4 9.09 16. Remove forceps, venous tubing, clamp, venous cannula 35 79.55 17. Release a r t e r i a l forceps & clamps 35 79.55 18. Tape cannulas & blood l i n e s 33 75.00 19. Dressing & k l i n g bandage over cannula s i t e 38 86.36 20. Monitoring l i n e i n t o a r t e r i a l l i n e , drip chamber—set l i m i t s 36 81.82 21. Set negative pressure, Y-tube 21 47.73 22. Check a l l monitors, gauges 11 25.00 23. Fix drip chamber 9 20.45 24. Blood pressure & weight 14 31.82 25. Bubble time 7 15.90 To t a l 597 * These percentages exceed 100 because patients than one step i n the procedure. reported more 59 know " a l l that they needed to know" so that they could cope s u c c e s s f u l l y with hemodialysis. In many instances the expressed needs r e f l e c t e d questions to which patients gave i n c o r r e c t or "don't know" answers. They wanted information about the causes and treatment of uremia, the reasons f o r blood pressure changes and weight imbalance between dialyses, a l t e r -ations i n dietary management and the e f f e c t s of various treatment pro-cedures. They also wanted current d e t a i l s about innovations i n treatment procedures. They also wanted current d e t a i l s about innovations i n t r e a t -ment and assistance with t h e i r health problems. Furthermore, they were interest e d i n learning more about the i n c l u s i o n of s a l t , s a l t substitutes and other e l e c t r o l y t e s and foods i n t h e i r d i e t s . While the majority of the patients were knowledgeable about heparin usage, many wanted more information about the dosage, e f f e c t s , complications and storage of heparin, as also about other anti-coagulants, imferon, and about medications s p e c i f i c a l l y prescribed for hemodialysis pa t i e n t s . A few wanted more information about the prevention and t r e a t -ment of cannula problems such as c l o t t i n g , i n f e c t i o n s and other factors contributing to cannula malfunction. Even though patients expressed few requests for a d d i t i o n a l i n f o r -mation about the c r i t i c a l aspects of d i a l y s i s management, they did ind i c a t e that they would l i k e to know more about any items which would enable them to better care f o r themselves. Several were i n t e r e s t e d i n hearing about the a v a i l a b i l i t y of smaller, improved and portable kidney machines, k i d -ney transplants and how to cope with d i a l y z e r problems and such conse-quences of treatment as p h y s i o l o g i c a l reactions. 60 When asked what a d d i t i o n a l information they wanted about the preparation of the Drake-Willock and K i i l d i a l y z e r , the few patients who wanted to know more were in t e r e s t e d i n hearing about shorter pre-paration times, self-hook-ups with arm cannulas, cleansing and service checks of the kidney machine and trouble-shooting a c t i v i t i e s f o r cannula separation and elevated temperatures. Some stated that they wanted more information but were unable to be s p e c i f i c i n t h e i r requests. Evidently, patients have a d e f i n i t e urge to acquire information, but they generally f e e l uninterested to go too deeply into the structured learning process provided by the program, p r e f e r r i n g rather to seek i n -formation outside of the categories contained i n the program, although they are unable to c l a s s i f y and p a r t i c u l a r i z e t h e i r desire f o r such addi-t i o n a l information. The educational program needs to be opened up to admit a greater v a r i e t y of types of information, as w e l l as to t r a i n the patient to i d e n t i f y and p a r t i c u l a r i z e h i s informational requirements. Recommendations for relevant program modifications are given i n the f i n a l chapter. Requests for A d d i t i o n a l Information and Services Patients made 103 requests for information i n addition to that noted above, inc l u d i n g added services to enhance t h e i r a b i l i t i e s to cope with home d i a l y s i s . The majority of the patients (75%) indic a t e d that they wanted information or consultative services to obtain advice about, or help with: (1) treatment procedures such as f i s t u l a s , (2) the p h y s i c a l and psycho-l o g i c a l e f f e c t s of treatment, (3) the family's a b i l i t y to cope with a 61 chronic i l l n e s s , and e s p e c i a l l y i n obtaining domestic help f o r husbands, (4) changing l i f e s t y l e , p a r t i c u l a r l y as i t a f f e c t s s o c i a l i z a t i o n with others, (5) counselling services i n learning to l i v e with a long-term health problem, (6) r e a d i l y a v a i l a b l e and improved medical services, (7) new developments i n treatment and equipment, (8) employment and f i n a n c i a l matters, and (9) t r a v e l arrangements on a n a t i o n a l l e v e l . Eleven patients wanted to develop an a f f i l i a t i o n with other r e n a l patients and community organizations. They also wished to improve communi-cations between patients and voluntary agencies such as the Kidney Founda-t i o n by means of a newsletter and group meetings. Eight patients were concerned about a d d i t i o n a l services for home d i a l y s i s i n s t a l l a t i o n and maintenance. Several f e l t that greater attention should be paid to educat-ing health professionals and the p u b l i c about chronic kidney f a i l u r e and d i a l y s i s patients, e s p e c i a l l y the patient's p o t e n t i a l f o r vocational re-h a b i l i t a t i o n . Of these, a few were concerned about the lack of knowledge and expertise demonstrated by the s t a f f members caring for patients both i n h o s p i t a l and i n the community (Table 13). INFORMATION SOURCES Patients were asked to indicate from which of 13 possible sources they had obtained or would prefer to obtain information about home d i a l y s i s or kidney f a i l u r e . The score for a c t u a l information sources was the t o t a l number of i n i t i a l informational contacts about kidney f a i l u r e and d i a l y s i s . Patients had obtained information from an average of 62.1 sources out of a possible maximum of 624 (p. 27 supra). When they were asked to i d e n t i f y 62 TABLE 13 A d d i t i o n a l Information and Services Needed f o r Better Coping T o t a l + Male Female Variable N/44 % N/26 % N/18 % 1. Consultative services f o r i n f o , advice about: 1.1 Treatment procedure; f i s t u l a s 15 34.09 11 25.00 4 9.09 1.2 Treatment e f f e c t s ; p h y s i -c a l , emotional 11 25.00 4 9.09 7 15.90 1.3 Family coping with chronic 11.36 i l l n e s s 11 25.00 6 13.63 5 1.4 Changing l i f e s t y l e ; 9.09 reduced s o c i a l contacts 10 22.73 6 13.63 4 1.5 Supportive help; counsel-l i n g 10 22.73 8 18.18 2 4.55 1.6 Medical resources; v i s i t i n g renal experts 7 15.90 5 11.36 2 4.55 1.7 New developments; d i a l y z e r , 6.81 transplants 5 11.36 2 4.55 3 1.8 Finances, employment 5 11.36 4 9.09 1 2.27 1.9 Travel; n a t i o n a l d i a l y s i s f a c i l i t i e s 3 6.81 2 4.55 1 2.27 To t a l 77 48 29 2. A f f i l i a t i o n with other re n a l patients: 4.55* 2.1 Newsletter 6 13.63 4 9.09 2 2.2 Home addresses 2 4.55 2 4.55 0 .00 2.3 Group meetings 2 4.55 2 4.55 0 .00 2.4 Community organizations 1 2.27 1 2.27 0 .00 To t a l 11 9 2 3. Home d i a l y s i s i n s t a l l a t i o n and service 8 18.18 5 11.36 3 6.81 To t a l 8 5 3 4. Pro f e s s i o n a l and p u b l i c education 4.1 Pr o f e s s i o n a l 5 11.36 4 9.09 1 2.27 4.2 Publ i c 2 4.55 2 4.55 0 .00 To t a l 7 6 1 Grand To t a l 103 68 35 * Discrepancies due to rounding procedures + The percentage sum to more than exceed 100 because some of the patients made more than one response. 63 information sources used to deal with past concerns, they reported that they had consulted an average of 7.2 sources. The score for preferred information sources r e l a t e d to learning needs was the t o t a l number of preferred contacts, and patients indicated that they would contact about 21.3 of these sources. When patients were asked to i d e n t i f y the sources that they would prefer f o r information i n order to deal with t h e i r current problems, they stated that they would consult an average of 1.3 sources (Table 17, p. 71). During the interviews patients stated that they pre-ferred to r e l y on t h e i r own resources to deal with current Concerns, but wanted health professionals such as the physician i n the renal unit to provide s p e c i a l i z e d information. Sources Consulted for Information on Disease Management The physician and the nurse i n the renal unit were the major source for information about chronic kidney f a i l u r e , medications, cannula care, and medical problems. While they provided some information about d i e t , the primary source for dietary information was the d i e t i t i a n . Many of the patients stated that they had learned about care of the d i a l y z e r and about preparation and hook-up procedures from both the technician and the nurse. The Major non-renal unit sources for information on care was the personal experience. The family physician was reported as a secondary source for information about kidney f a i l u r e and d i e t . Miscellaneous sources such as other s p e c i a l i s t s and h o s p i t a l personnel (Table 30, p. 140) were mentioned as secondary sources for information about medications and d i a l y s i s (Table 14). TABLE 14 Sources Consulted f o r Information about Kidney Condition Knowledge Sources Renal Unit Non-renal Unit Question R.N. %+ M.D. % Tech. % Diet. % Pro. L i t . % S.W. % Own Exp. % Own M.D. % Misc. % Pats. % Rela-t i v e % Chronic kidney f a i l u r e 70.45 88.64* .00 36.36 22.73 .00 56.82 54.55 22.73 6.82 20.45 Diet 65.91 86.36 .00 93.18* 22.73 .00 70.45 31.82 13.64 9.09 11.36 Medications 93.18* 75.00 18.18 2.27 11.36 .00 20.45 6.82 9.09 2.27 .00 Cannula care 97.73* 72.73 15.91 .00 13.64 .00 61.36 4.55 13.64 15.91 4.55 D i a l y s i s 100.00* 88.64 93.18 18.18 31.82 .00 59.09 6.82 13.64 11.36 .00 Medical problems 93.18* 77.27 .00 4.55 22.73 2.27 61.36 9.09 2.27 13.64 6.82 Technical ( d i a l y z e r care) 70.45 9.09 90.91* .00 9.09 .00 13.64 .00 .00 4.55 .00 Preparation and hook-up procedures 90.91* 6.82 70.45 .00 4.55 .00 .00 .00 .00 .00 .00 The data presented are defined as the number of times each information source was c i t e d f o r each category by the 44 patients. These numbers exceed 100 per cent because many of the patients reported more than one information source. * When patients were asked from whom they " f i r s t heard about" each health topic, the starred item appeared as source of f i r s t information. Key: R.N. = Registered Nurse Diet. = D i e t i t i a n Own Exp. = Own Experience M.D. = Medical Doctor Pro. = Professional Own M.D. = Personal Physician Tech.= Technician L i t . L i t e r a t u r e Misc. = Miscellaneous S.W. = S o c i a l Worker Pats. = Patients ON 65 Information Sources Used for Past Concerns The physician was the chief renal unit sources of information for handling past problems and next, the nurse. The s o c i a l worker, the d i e t i t i a n , the technician, and p r o f e s s i o n a l l i t e r a t u r e followed i n that order. The renal unit physician was reported to have been the major source of information about change i n residence and i n jobs, i n a b i l i t y to work, reduction i n s o c i a l a c t i v i t y , i n a b i l i t y to carry out r o l e as marriage partner, death or other change i n family s o c i a l r e l a t i o n s . The majority of the references to the nurse r e l a t e d to dealing with symptoms of i l l -ness and/or treatment and i n a b i l i t y to work. References made to the s o c i a l worker centred about finances, r o l e maintenance, changing l i f e goals and diet regimen. Information sources for past dietary problems were the d i e t i t i a n and p r o f e s s i o n a l l i t e r a t u r e . In recording non-renal unit sources, patients reported r e l y i n g on t h e i r own experiences to solve past problems except f o r dealing with t h e i r f e e l i n g s about the unknown. They had consulted r e l a t i v e s f o r past problems p a r t i c u l a r l y those r e l a t e d to change i n l i f e goals, i n a b i l i t y to carry out breadwinner/housewife roles and f i n a n c i a l matters. The family physician was quoted as providing information about p h y s i c a l symptoms of i l l n e s s and treatment. Patients had used miscellaneous sources such as employers and s o c i a l and welfare agencies (Table 31, p. 14l) to deal p r i m a r i l y with f i n a n c i a l problems (Table 15). TABLE 15 Sources Consulted for Information About Concerns: Past and Present Pro. Own Own Rela-Concerns M.D. % R.N. % S.W. % Diet. % Tech. % L i t . % Exp. % M.D. % Misc.-% Pats. % t i v e % Past 43.18 34.09 13.64 6.82 2.27 2.27 63.64* 11.36 29.55 2.27 50.00 Present 9.09 4.55 2.27 .00 .00 .00 20.45* 4.55 13.64 .00 4.55 The starred item appeared as source of f i r s t information. The data presented are defined as the number of times each information source was ci t e d f o r each category by the 44 patients. Key M.D. = Medical Doctor R.N. = Registered Nurse S.W. = S o c i a l Worker Diet. = D i e t i t i a n Tech. = Technician Pro. = Professional L i t . L i t e r a t u r e Own Exp. = Own Experience Own M.D. = PersotialiP-hysician Pats. = Patients Misc. = Miscellaneous ON 67 Information Sources Preferred f o r Learning Needs Patients indicated that the renal unit physician and nurse were the preferred sources of a d d i t i o n a l information about kidney f a i l u r e , medications, cannula care, and medical problems. The d i e t i t i a n and the physician i n the renal unit were the most frequently c i t e d sources f o r dietary information. For a d d i t i o n a l i n f o r -mation about d i a l y s i s , patients would consult the physician, the tech-n i c i a n and the nurse r e s p e c t i v e l y , the l a s t two being preferred sources f o r more information about t e c h n i c a l matters, and preparation and hook-up procedures, with the technician as the primary source on the care of the d i a l y z e r . P r o f e s s i o n a l l i t e r a t u r e would be used for a d d i t i o n a l i n -formation about kidney f a i l u r e and d i a l y s i s . The s o c i a l worker was not reported to be a preferred information source. Except for t e c h n i c a l matters the patient's personal physician was considered to be the preferred non-renal unit source for most i n f o r -mation. Miscellaneous sources such as manufacturers of kidney equipment and other medical personnel (Table 32, p. 142) were preferred f o r i n f o r -mation about technical matters and secondarily for information about kidney f a i l u r e , medications, cannula care and d i a l y s i s (Table 16). Information Sources Preferred f o r Present Concerns The physician i n the r e n a l unit was the preferred source for i n -formation about present Concerns, while the nurse and the s o c i a l worker received lower r a t i n g s . Patients preferred the physician i n the renal unit as a source to deal with present problems r e l a t e d to symptoms from TABLE 16 Sources Preferred f o r More Information about Kidney Condition Sources Learning Renal Unit Non--renal Unit Needs Question M.D. %+ R.N. % Tech. % Pro. L i t . % Diet. % S.W. % Own M.D. % Misc. % Rela-t i v e % Pats. % Own Exp. % Chronic kidney f a i l u r e 68.18* 31.82 4.55 29.55 20.45 .00 25.00 18.18 4.55 2.27 2.27 Diet 31.82* 9.09 .00 6.82 45.45 .00 15.91 4.55 4.55 4.55 2.27 Medications 59,09* 38.64 4.55 4.55 .00 .00 20.45 6.82 2.27 .00 .00 Cannula care 50.00* 47.73 .00 2.27 .00 .00 6.82 6.82 .00 2.27 2.27 D i a l y s i s 70.45* 47.74 65.91 18.18 2.27 2.27 18.18 11.36 9.09 6.82 2.27 Medical problems 84.09* 50.00 6.82 6.82 4.55 2.27 18.18 4.55 .00 .00 2.27 Technical (dialyzer care) 6.82 15.91 47.73* 4.55 .00 .00 .00 9.09 .00 2.27 .00 Preparation & hook-up procedure 4.55 6.82 11.36 .00 .00 .00 2.27 .00 .00 2.27 .00 The data presented are defined as the number of times each information source was c i t e d f o r each category by the 44 patients. + The percentage exceeded 100 because many patients reported more than one information source. * The starred item appeared as the f i r s t p o t e n t i a l source of information. Pro. = Professional Own M.D. = Personal. Physician L i t . L i t e r a t u r e Misc. = Miscellaneous D i e t . = D i e t i t i a n Pats. = Patients S.W. = S o c i a l Worker Own Exp. = Own Experience Key: M.D. = Medical Doctor R.N. = Registered Nurse Tech. = Technician 00 69 treatment to r o l e changes, while nurses would be contacted for informa-t i o n about depression, i n a b i l i t y to carry out the breadwinner or house-wife r o l e s and problems with cannulas. One reference was made to the s o c i a l worker as an information source about changing jobs. Patients claim they would not consult the d i e t i t i a n , technician or p r o f e s s i o n a l l i t e r a t u r e about present problems. Personal experiences, the family physician, r e l a t i v e s and miscel-laneous sources were non-renal unit sources preferred by the patients to deal with current Concerns (Table 15, p. 66). Patients indicated that they would r e l y on t h e i r own experiences to deal with i n a b i l i t y to carry out t h e i r breadwinner or housewife r o l e s , change i n l i f e goals, depression, dependency on treatment, i n a b i l i t y to carry out t h e i r marriage r o l e , f i n a n -c i a l problems, change i n body image, phys i c a l symptoms from treatment, i n -a b i l i t y to work, reduction i n income, dietary matters, acceptance of chronic i l l n e s s and reduction i n s o c i a l a c t i v i t y . Patients wanted r e l a t i v e s to provide information to deal with depression, i n a b i l i t y to carry out t h e i r worker r o l e , dependency on treatment and dietary problems. The personal physician would be preferred for information about dependency on treatment and i n a b i l i t y to carry out the marriage r o l e . Other patients were not reported as an information source for present problems. Patients would consult miscellaneous sources such as the psychi-a t r i s t and r e h a b i l i t a t i o n counsellor (Table 33, p. 143) to deal with depression, f i n a n c i a l problems, phy s i c a l symptoms from treatment, i n -a b i l i t y to carry out r o l e as breadwinner or housewife, dependency on treatment, change i n jobs, i n a b i l i t y to carry out r o l e as marriage partner, 70 i n a b i l i t y to work, change, i n body image and reduction i n income (Table 15, p. 66). The possible ranges of information-seeking a c t i v i t i e s are general measures established by the in v e s t i g a t o r on the basis of l i t e r a t u r e i n the f i e l d (Fellows, 1966a, Redman and Daly, 1969, Feldman, 1966, Wads-worth, 1970). The consistent differences between the possible and the observed ranges e f f e c t i v e l y i l l u s t r a t e the s h o r t f a l l between what the patient may be expected to know and what he a c t u a l l y does know. In future, t h i s s h o r t f a l l may therefore m a t e r i a l l y influence the expecta-t i o n of health professionals about the patient's t r a i n i n g program and may lead to more r e a l i s t i c modifications of the structured content. An a l t e r n a t i v e explanation f o r the knowledge score may be that the responses were graded too harshly; however, a 95 per cent congruence on judged responses among the three judges and the i n v e s t i g a t o r argues that patients a c t u a l l y knew less f a c t u a l material than they should. The score for learning needs i s also another good case i n point. The maximum possible score (assuming one need per category) was assumed to be 59; the actu a l maximum was 56. This shows that some patients are c e r t a i n l y eager to learn but apparently not within the framework of the program. A review of the possible and observed range of score on i n f o r -mation sources suggests that patients do not make f u l l use of the informa-t i o n sources a v a i l a b l e to them i n the present program. Since they do express an i n t e r e s t to acquire information, there i s c l e a r l y a need to di r e c t them to alternate information sources. (Table 17) TABLE 17 Patient C h a r a c t e r i s t i c s : Information Seeking Variable No. of Subjects Possible Range 3 Observed Range Mean Standard Deviation Mean Male Female Knowledge score 44 0-300 53-155 113.6 22.3. 112.9 114.6 * Learning needs score 44 0-59 3-56 23.6 14.7 25.1 21.4 * Past Concerns score 44 0-22 0-22 5.4 4.7 6.0 5.1 * Present Concerns score 44 0-22 0-8 1.9 2.1' 1,8 2.2 * Actual information source score for knowledge questions 44 0-624 13-92 62.1 15.0 60.9 63.9 * Actual information source score f o r past Concerns 44 0-286 0-44 7.2 8.1 8.2 6.3 * Preferred information source score for learning needs 44 0-715 2-59 23.3 14.0 22.1 20.0 * Preferred information source score f o r present Concerns 44 0-286 0-8 1.3 2.0 1.3 1.4 * Preparation and hook-up s k i l l score 44 0-52 0-49 29.7 7.8 30.8 28.2 * * Male - female differences are not s i g n i f i c a n t , a Scores discussed on pp. 24-27. 72 INTERCORRELATIONS AMONG PATIENT CHARACTERISTICS So c i a l Status As measured by the Blishen Occupational Rating Scale, higher s o c i a l status scores were associated with higher education l e v e l s (r=.60), the distance from the renal unit (r=.35) and longer t r a i n i n g (r=.29) (Table 18). In general the more years of school an i n d i v i d u a l receives, the higher w i l l be h i s s o c i a l status and the l e s s r e s t r i c t e d h i s choice of residence. These factors when applied to the d i a l y s i s patient might be expected to minimize the importance of distance from the renal u n i t , and the time involved i n t r a i n i n g , but t h i s i s not to suggest that the t r a i n -ing program can be shortened. Renal units also tend to be located i n urban settings where large numbers of persons i n lower socio-economic classes reside. Years of School Completed Patients who have been on home hemodialysis longest were l i k e l y to have higher l e v e l s of education (r=.35) (Table 18). Previous studies by Seligman et a l . , (1957), Samora et a l . , (1962), E l l i s (1964), Meldrum et a l . , (1968) and Dodge (1969) revealed that patients with a greater amount of schooling w i l l be more r e a d i l y able to learn about t h e i r condi-t i o n and i t s management. This indicates that the t r a i n i n g program must be geared to the educational l e v e l of the patient. Those with l e s s edu-cation can be expected to require more t r a i n i n g more c a r e f u l l y structured to insure a s a t i s f a c t o r y l e v e l of learning. TABLE J.8 Correlation Coefficients: Patients Variables 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 1. Age 1.00 2. Number children .23 .1.00 3. Schooling -.08 -.20 1.00 4. Duration !IHD -.04 -.01 .35 1.00 5. Duration HDTP .20 -.01 .01 -.07 1.00 .05 level - .29 6. Total treatment .21 -.003 .02 .21 .06 1.00 .01 level = .37 7. No. previous methods -.14 .02 -.06 .28 -.10 .02 1.00 8. Distance renal unit -.15 .05 .15 -.84 -.23 •-.08 .02 1.00 9. Rotter's I-E Score -.38 -.08 -.08 -.0001 .18 .11 .12 .25 1.00 10. Social Status Score .08 -.20 _si£ .14 • 29 -.09 .23 • 35 -.08 1.00 11. Knowledge Score -.14 ^40 .45. .09 -.09 .11 -.04 -.01 -.07 __2 1.00 12. Learning needs score -.11 • 29 -.16 .17 -.18 •17 -.03 .24 .25 -.05 -.13 1.00 13. Past Concerns score -.31 -.04 .17 .05 .10 -.04 -.01 -.14 .20 .09 .17 .20 1.00 14. Present Concerns score .02 -.16 -.05 .20 • 32 -.02 .04 -.17 .05 -.06 .06 -.03 -.04 1.00 15. Information score knowledge itercs -.18 -.31 .23 .13 .01 .17 .01 .14 .22 • 32 ___ -.01 .20 -.03 1.00 16. Information score learning needs -.04 -.29 -.09 -.14 -.06 .10 -.12 .29 .29 -.02 -.18 _M -19 .17 -.05 1.00 17. Information score past Concerns .03 .15 .14 -.01 .03 .09 -.07 .18 .13 .21 .24 _j90 .03 .09 .14 1.00 18. Information score present Concerns .11 -.12 -.13 -.13 .0002 .20 .09 -.26 .06 -.28 -;02 -.13 -.07 .03 -.03 -.17 1.00 19. S k i l l score -.07 .08 .06 .21 -.25 .10 .08 • 33 .14 .11 .10 .17 -.30 -.23 -.23 .12 -.01 -.04 1.00 Single lined - .05 level Double lined • .01 level 74 Distance from Renal Units to Place of Residence Those patients l i v i n g greater distances from the renal units tended to have been on home hemodialysis shorter periods of time (r=-.84), and to have had a shorter t r a i n i n g program (r=-..23), while those l i v i n g closer tended to spend a longer time i n the t r a i n i n g program (r=-.23) (Table 18). This i s probably due to the cost of t r a v e l l i n g any distance to the renal unit and of maintenance f o r the patient and family while i n the u n i t . Furthermore, distance from the unit may be a motivational t a c t i c i n f l u e n c i n g learning. Internal-External Control of Reinforcement Scale and Socio-emotional Concerns  Older patients scored more toward the i n t e r n a l on the Control of Reinforcement Scale (r=-.38), and reported fewer past problems (r=-^.31). Patients who had undergone a longer home d i a l y s i s t r a i n i n g program were concerned about more current Concerns (r=.32) than those of shorter t r a i n -ing term (Table 16, p. 68). Patients i d e n t i f i e d more past (5v4) than present (1.9) Concerns which i s s i g n i f i c a n t at the .001 l e v e l ( x 2=66.6, df=21). I t i s possible that with the passing of time the patients' a b i l i t i e s to solve these Concerns becomes more e f f e c t i v e . A l t e r n a t i v e l y , they come to deny the existence of such problems as t h e i r disease progresses and they r e a l i z e there i s no cure. Level of Knowledge Patients with a greater number of years of school completed (r=.45), higher s o c i a l status scores on the Blishen Scale (r=.42) and 75 with fewer ch i l d r e n (r=^ --. 40) were more knowledgeable about t h e i r condition (Table 18, p. 73). The p o s i t i v e c o r r e l a t i o n of educational l e v e l with knowledge corroborates studies by Seligman et a l . , (1957), Samora et a l . , (1962), Rosenstock et a l . , (1966) and Dodge (1969), while Pragoff et a l . , (1962) and Rosenstock et a l . , (1966) reported that i n d i v i d u a l s with high s o c i a l status tended to be more knowledgeable about health matters. One-way Analysis of Variance on knowledge scores for patients whose occupations changed due to i l l n e s s was s i g n i f i c a n t beyond .01 l e v e l (F=5.6, df=l,43). Those whose occupations had changed due to t h e i r i l l n e s s obtained higher knowledge scores, which suggests that they sought more information i n the hope of becoming enough r e h a b i l i t a t e d p h y s i c a l l y to enable them to get back to t h e i r o r i g i n a l occupations. No other s i g n i f i c a n t r e l a t i o n s h i p s were found among the socio-economic variables studied and the patients' l e v e l of knowledge. Preparation and Hook-up S k i l l s Patients l i v i n g greater distances from the r e n a l unit (r=.33) were more knowledgeable about the preparation and hook-up procedures. A s l i g h t p o s i t i v e association was noted with the length of time on home hemodialysis (r=.21) and a low negative a s s o c i a t i o n with the length of the t r a i n i n g program (r=.25) (Table 18). This suggests that the longer a person spends on t h i s form of therapy the more s k i l l e d he becomes i n preparing himself for d i a l y s i s . 76 Learning Needs Compared with other patients those with l a r g e r f a m i l i e s expressed more learning needs (r=.29) (Table 18, p. 7 3 ) . I t i s possible that the larger the family the greater may be the patient's desire and need f o r a d d i t i o n a l information. No other s i g n i f i c a n t r e l a t i o n s h i p s existed among the learning needs index and biographical and health treatment v a r i a b l e s . Sources of Information Patients who had higher status scores (r=.32) and fewer c h i l d r e n (r=--31)had used many sources to learn about t h e i r health problem. Older patients reported having used many sources f o r information about past Concerns (r=-.39) The number of information sources preferred by patients f o r a d d i t i o n a l information was associated with distance from the ren a l unit (r=.29), external o r i e n t a t i o n toward Control of Reinforcement Scale (r=.29) and larger f a m i l i e s (r=-.29) (Table 18, p. 73). The number of sources used by older patients may be contingent upon the l i f e span of the i n d i v i d u a l and upon the number of times he has had recourse to those sources during h i s l i f e . I t i s not s u r p r i s i n g that the externally oriented patient should want a wider v a r i e t y of i n -formation sources than the i n t e r n a l l y oriented patient, as the exter n a l l y oriented i n d i v i d u a l accepts external influences r e a d i l y and therefore needs more external guidelines. The i n t e r n a l l y oriented patient on the other hand depends more upon himself and f e e l s that fewer information sources would s u f f i c e . 77 No r e l a t i o n s h i p s were discovered between the biographical v a r i a b l e s and the preferred information sources for information about present Con-cerns . Summary Patients with fewer c h i l d r e n tended to be more knowledgeable about t h e i r condition and to use more sources to acquire that information. Patients with more c h i l d r e n made a greater number of requests for addi-t i o n a l information. The greater the number of years of school completed the more knowledgeable patients were about t h e i r condition but differences also occurred when patients had undergone occupational changes due to i l l n e s s . Patients who l i v e d farthest from the renal units were more know-ledgeable about handling the d i a l y s i s procedures and would use more sources to acquire a d d i t i o n a l information. Patients who perceived themselves to be governed by forces beyond t h e i r control required more sources for a d d i t i o n a l information (Table 18, p. 73). Knowledge about the r e l a t i o n s h i p between the patient's selected biographical c h a r a c t e r i s t i c s and h i s learning s i t u a t i o n should be of value to health and adult educators i n planning patient education programs. The t r a i n i n g program must consider such v a r i a b l e s as the educational l e v e l of the patient and be modified f o r those with l e s s education, and larger "families. Information may have to be disseminated i n a v a r i e t y of ways to the externally oriented patient. CHAPTER V THE STAFF This chapter describes the Renal Unit S t a f f and t h e i r perceptions of the patients. BIOGRAPHICAL CHARACTERISTICS Of the 29 s t a f f members, 19 were female and 10 were male. The mean age was 35.4 years. The majority of the nursing s t a f f (92%) i n d i c a t e d that they had received t h e i r i n i t i a l nursing education from h o s p i t a l diploma programs. One nurse had graduated from a baccalaureate program i n nursing and one had a master's degree i n nursing with a medical-surgical major. Four had taken a d d i t i o n a l h o s p i t a l post-graduate courses i n nursing, and of these, three had taken o b s t e t r i c a l courses and one had completed an intensive-coronary care nursing course. Two reported having had addi-t i o n a l general educational experiences. The majority (85%), however, had no a d d i t i o n a l general or p r o f e s s i o n a l education beyond t h e i r basic preparation. D i e t i t i a n s reported no a d d i t i o n a l preparation beyond t h e i r baccalaureate degree. Of the physicians, two had completed s p e c i a l t y work i n nephrology, and one had a c e r t i f i c a t e i n i n t e r n a l medicine. Two s o c i a l workers had completed post-graduate programs i n s o c i a l work while the t h i r d had done undergraduate studies. 78 79 Of the seven r e n a l technicians, f i v e had obtained t h e i r t r a i n i n g on-the-job i n a h o s p i t a l , and two received th e i r t r a i n i n g i n other i n -s t i t u t i o n s such as a s p e c i a l i z e d medical treatment centre. None of the technicians had taken any further nephrology courses l a s t i n g longer than one month. Only 12 s t a f f members (41%) had obtained a d d i t i o n a l educational experiences. These experiences consisted of unspecified c r e d i t courses, studies i n other p r o f e s s i o n a l areas, arts and sciences. Of the s t a f f members, the majority (41%) had received t h e i r pro-f e s s i o n a l education i n B r i t i s h Columbia, 35 per cent i n the United Kingdom, Europe and the United States and 24 per cent i n another part of Canada. The majority (68%) had been i n p r a c t i c e less than ten years, while 29 per cent had been i n p r a c t i c e over ten years. The mean number of years i n p r a c t i c e was 8.7 with a range from seven months to 26 years. Twenty-one s t a f f members had worked i n home hemodialysis for longer than one year, while eight had been involved le s s than a year (Table 20, p. 81). Ninety per cent of the s t a f f reported p a r t i c i p a t i o n i n the Home Di a l y s i s Training Program. Three members stated that they were not i n -volved i n t h i s a c t i v i t y . The mean amount of involvement i n the weekly teaching was 14.3 hours with a range of one to 48 hours (Tables, 19, 20). Blishen Occupational Rating Scale Measured on the Blishen Scale the s o c i a l status scores of the s t a f f ranged from a minimum of 42 to a maximum of 75. Nine s t a f f members had scores of more than 58, while 20 had scores of 48 or l e s s . A l l of the scores were above the mean on the Blishen Scale for the B r i t i s h 80 TABLE 19 Twenty-nine St a f f Members Selected Biographical C h a r a c t e r i s t i c s T o t a l Male Female Variables N % N % N % Renal Unit Royal Jubilee 6 20. 69 3 30. 00 3 15. 79 St. Paul's 15 51. 72 4 40. 00 11 57. 09 Vancouver General 8 27; 59 3 30. 00 5 26. 32 T o t a l 29 100. 00 10 100. 00 19 100. 00 Age 18 to 34 16 55. ,17 2 20. ,00 14 73. 69 35 to 59 12 41. .38 8 80. ,00 4 21. 05 60 and over 1 3. .45 0 ,00 1 5. 26 To t a l 29 100. ,00 10 100. .00 19 100. 00 M a r i t a l Status Single 10 34.48 0 .00 10 52. 63 Married 17 58.62 10 100, .00 7 36. 84 Divorced/widowed 2 6.90 0 .00 2 10. 53 T o t a l 29 100. .00 10 100, .00 19 100. 00 Location of Pr o f e s s i o n a l Education B r i t i s h Columbia 12 41. .38 4 40, .00 8 42. ,11 Other country 10 34, .48 4 40, .00 6 31. ,57 Other part of Canada 7 24, .14 2 20, .00 5 26. ,32 To t a l 29 100, .00 10 100 .00 19 100. ,00 Ad d i t i o n a l Education No 16 55 .16 3 30 .00 13 68, .42 Yes 12 41 .38 7 70 .00 5 26, .32 No response T o t a l 1 3 .45 0 .00 1 5, .26 29 100 .00 10 100 .00 19 100, .00 Country of B i r t h 8 42 .11 Other 16 55 .17 8 80 .00 Canada 13 44 .83 2 20 .00 11 57 .89 T o t a l 29 100 .00 10 100 .00 19 100 .00 Teaching P a r t i c i p a t i o n i n H.D.T.P. 84 .21 Yes 26 89 .66 10 100 .00 16 No 3 10 .34 0 .00 3 15 .79 T o t a l 29 100 .00 10 100 .00 19 100 .00 Residency Training .00 15 78 .95 No 23 79 .31 8 80 Yes 6 20 .69 2 20 .00 4 21 .05 To t a l 29 100 .00 10 100 .00 19 100 .00 TABLE 20 Staf f C h a r a c t e r i s t i c s : Biographical by Sex Variables No. of Subjects Possible Range Observed Range Mean Standard Deviation Mean Male Female 1. Age 29 19-65 22-61 35.4 9.6 39.2 33.9 A A 2. HHD Involvement i n years 29 0-? .6-5.1 2.0 1.2! 1.9 2.1 A A 3. Weekly teaching contact hours 26 0-? 1-48 14.3 11.3 14.3 9.7 A A 4. Length of residency t r a i n i n g i n years 6 0-? *1-5.1 2.9 2.3 5.2 1.9 A A 5. Length of pr o f e s s i o n a l p r a c t i c e i n years 29 0-? *l-26 8.7 6.9 9.3 8.4 A A 6. Internal-External Control of Reinforcement Scale 23 0-23 a 1-16 9.3 3.5 9.0 9.4 A A 7. Blishen's Occupational Rating Scale (Blishen Scale) 29 28-76 3 42-75 50.1 10.5 52.8 48.7 A A a See p.27. A A Male-female differences not s i g n i f i c a n t . 82 Columbia Labor Force population i n 1961 (Blishen, 1967, p. 53). Mean s t a f f scores were higher than those obtained by 41 per cent of the patients (Table 20, p. 81). The differences between health p r a c t i c e b e l i e f s held by the s t a f f and those held by the patients, may be a t t r i -buted i n part to the differences i n the s o c i a l status of both groups (Koos, 1954; Baumann, 1961). Internal-External Control of Reinforcement Scale The Internal-External Control of Reinforcement Scale was used to determine whether s t a f f perceptions of l i f e - e v e n t s were i n t e r n a l l y or externally directed. They were found to be more external (x = 9.3) i n t h e i r locus of con t r o l (Table 20) than were patients (x = 6.4). Although these differences were not s t a t i s t i c a l l y s i g n i f i c a n t the differe n c e i n response may be a serious impediment to patient a b i l i t y to assume r e s p o n s i b i l i t y for learning. In general, the s t a f f had spent considerable time working with home hemodialysis. Although only a small number had in-depth experience of residency t r a i n i n g , they were experimentally w e l l - q u a l i f i e d and might be expected to be e f f e c t i v e information sources f o r patients but t h e i r external o r i e n t a t i o n may i n h i b i t t h e i r a b i l i t y to a s s i s t the patient to assume r e s p o n s i b i l i t y for h i s own care. The higher Internal-External scores for the s t a f f may r e f l e c t t h e i r basic p r o f e s sional education experiences. During the s o c i a l i z a t i o n process into the profession, health science students may perceive that external forces influence decisions a f f e c t i n g t h e i r education. This contradicts Rotter's findings (1966, p. 16) that college bound students 83 were more i n t e r n a l than were those who did not intend to attend college. The external o r i e n t a t i o n f o r the s t a f f discovered i n the present study may be a r e f l e c t i o n of t h e i r p r a c t i c e experiences. Robinson (1975) reported a mean score of 9.1 for p a r t i c i p a n t s i n a continuing education nursing program, and a mean score of 8.6 f o r a c o n t r o l group of nurses. The present study reinforces Robinson's f i n d -ings that female health professionals are ext e r n a l l y oriented. Corres-ponding figures f o r B r i t i s h Columbia health professionals are males 9.0, and females 9.4. ESTIMATES OF PATIENT CONCERNS The twenty-eight s t a f f members assessed patient Concerns and i d e n t i f i e d 9.8 past and 8.8 present Concerns (Table 21). In t h e i r estimate the mean number of past problems for s t a f f men and women were, 8.6 and 10.5 re s p e c t i v e l y , while the numbers of present problems were 11.5 for s t a f f men and 7.5 for women. Ext e r n a l l y oriented s t a f f members perceived many patient Concerns, both past and present, but the i n t e r n a l l y oriented members estimated present problems to outnumber past issues. I t i s l i k e l y that generally speaking the i n t e r n a l l y oriented i n d i v i d u a l i s highly moti-vated as to problem-solving and therefore concentrates upon immediately relevant Concerns rather than past issues. I n t e r n a l l y oriented s t a f f members may thus impose t h e i r own attitudes to l i f e ' s problems upon the i r estimates of the patient's perceptions. Staff members i d e n t i f i e d as chief past Concerns such items as: diet regimen, reduction i n income, cannula problems, f i n a n c i a l problems, TABLE 21 Staf f Estimates: Socio-emotional Concerns Total Past To t a l Present To t a l Male Female Tot a l Male Female Concern N/29 % N/10 % N/19 % N/28 % •N/3.0 % N/18 % Diet regimen 20 71.43 6 21.42 14 50.00 7 25.00 4 14.28 3 10.71 Reduction i n income 19 67.86 5 17.85 14 50.00 8 28.57 5 17.85 3 10.71 Cannula problems 18 64.28 5 17.85 13 46.43 11 39.28 5 17.85 6 21.42 F i n a n c i a l problems 17 60.71 4 14.29 13 46.43 10 35.71 6 21.42 4 14.28 Change i n residence 16 57.14 5 17.85 11 39.28 7 25.00 3 10.71 4 14.28 Change i n s o c i a l r e l a t i o n s with f r i e n d s , co-workers 16 57.14 5 17.85 11 39.28 7 25.00 3 10.71 4. 14.28 P h y s i c a l symptoms of i l l n e s s 15 53.57 6 21.42 9 32.42 10 35.71 3 10.71 7 25.00 Change i n jobs 15 53.57 4 14.28 11 39.28 9 32.14 6 21.42 3 10.71 Change i n l i f e goals 14 50.00 6 21.42 8 28.57 13 46.42 4 14.28 9 32.14 Acceptance of c h r o n i c i t y 14 50.00 5 17.85 9 32.42 13 46.42 5 17.85 8 28.57 I n a b i l i t y to work 14 50.00 4 14.28 10 35.71 13 46.42 6 21.42 7 25.00 Reduced s o c i a l a c t i v i t y 14 50.00 4 14.28 10 35.71 6 21.42 3 10.71 3 10.71 Ph y s i c a l symptoms from treatment 13 46.42 3 10.71 10 35.71 12 42.85 6 21.42 6 21.42 Change i n family s o c i a l r e l a t i o n s 13 46.42 4 14.28 9 32.42 14 50.00 5 17.85 9 32.14 Mental state 12 42.85 3 10.71 9 32.14 6 21.42 4 14.28 2 7.14 Dependency on treatment 12 42.85 3 10.71 9 32.14 15 53.57 .7 25.00 8 28.57 I n a b i l i t y to carry out worker r o l e 11 39.28 3 10.71 8 28.57 15 53.57 6 21.42 9 32.14 Change i n body image 11 39.28 3 10.71 8 28.57 12 42.85 4 14.28 8 28.57 Dying 6 21.42 3 10.71 3 10.71 15 53.57 6 21.42 9 32.14 Depression 6 21.42 2 7.14 4 14.28 19 67.85 8 28.57 11 39.28 I n a b i l i t y to carry out marriage ro l e 6 21.42 1 3.57 5 17.85 18 64.28 9 32.14 9 32.14 Feelings about the unknown 4 14.28 2 7.14 2 7.14 17 60.71 6 21.42 11 39.28 Discrepancies due to rounding. oo -p-85 change i n residence and i n s o c i a l r e l a t i o n s with f r i e n d s , p h y s i c a l symptoms of i l l n e s s , change i n jobs and i n l i f e goals or plans, acceptance of chr o n i c i t y , i n a b i l i t y to work, reduced s o c i a l a c t i v i t y , p h y s i c a l symptoms from treatment, change i n f a m i l i a l r e l a t i o n s , mental state such as con-fusion, dependency on treatment, i n a b i l i t y to carry out worker role and change i n body image. Estimated as l e a s t important were Concerns about dying, depression, i n a b i l i t y to carry out marriage r o l e and feelings about the unknown (Table 21, p. 84). Most of these past Concerns were also perceived by s t a f f members as present Concerns of pa t i e n t s . Problems recognized of less Concern were: change i n jobs, reduction i n income, change i n residence and i n s o c i a l r e l a t i o n s with friends, dietary matters, mental state and reduced s o c i a l a c t i v i t y (Table 21). Male and female s t a f f members d i f f e r e d i n t h e i r i d e n t i f i c a t i o n of patient Concerns, with men reporting more present problems than past, while the women members saw fewer present problems. This suggests that women were more apt to perceive patient problems to diminish with i n -creased experience i n therapy. Only two studies were found that considered patient Concerns and i n both of these nurses were used as information sources. Easthouse (1968) reported the following nine Concerns: f e e l i n g s about the unknown, p h y s i c a l state, pain and discomfort, loss of co n t r o l of the environment, f i n a n c i a l d i f f i c u l t i e s and di s r u p t i o n of plan of l i f e , mental state and d i s o r i e n t a -t i o n , previous experiences, death and destruction of body image (p. 74). Aydelotte (1967) i d e n t i f i e d : acceptance of chronic i l l n e s s and dependency 86 on treatment, change i n r o l e or i n a b i l i t y to perform a r o l e , symptoms of i l l n e s s or from therapy, use of exhaustion or lack of coping behavior, dietary regimen, maintenance of shunt and cannula, psychological not r e a d i l y i d e n t i f i a b l e , transportation and r e l o c a t i o n , f i n a n c i a l problems and precise change i n body image (p. 8). Since both studies dealt with nurses, the r e l a t i v e responses of male and female s t a f f members reported here i s not comparable with other research. ESTIMATES OF PATIENT COMPETENCE Level of Knowledge St a f f members were asked to estimate patient l e v e l s of knowledge. Generally, they agreed that patients were knowledgeable about c r i t i c a l management tasks such as l i m i t i n g weight gain between dialyses or blood pressure and dietary c o n t r o l . They also indicated that patients could cope with such matters as missed d i a l y s i s or membrane rupture, however, they considered patients poorly informed about diagnostic s k i l l s such as self-monitoring, or detecting c l o t t e d cannulas. On the other hand such matters as permissible foods, problems of calcium absorption, and sensory changes, and s t e r i l i z i n g the d i a l y z e r , patients were thought to possess l i m i t e d knowledge (Table 22). Table 22 l i s t s questions which s t a f f estimated that patients would give i n c o r r e c t answers or did not know the answers. A l l other questions would, be answered c o r r e c t l y , the s t a f f assumed. Sta f f members stated that they r a r e l y discussed medical problems with patients i n order to minimize patient worry. This a t t i t u d e might TABLE 22 87 Kidney Fa i l u r e and D i a l y s i s Misinformation Estimated by Staff ^. Incorrect Don't Know Question „ % JJ % Chronic Kidney F a i l u r e 1. Cause elevated B.P. 1 3.85 2 7.69 2. Evidence - high s a l t 0 .00 1 ' 3.85 3. Cause of high s a l t 1 3.85 1 3.85 4. Reasons to l i m i t weight 0 .00 1 3.85 5. Uremia 0 .00 6 23.08 6. Symptoms of uremia _0 .00 1 3.85 Sub Total 2 12 Diet 1. Cooking without s a l t 0 .00 0 .00 2. S a l t substitutes 0 .00 1 3.85 3. Protein intake 0 .00 0 .00 4. Mineral intake 0 .00 0 .00 5. Fluid/water intake 1 3.85 0 .00 6. C a l o r i c intake 1 3.85 1 3.85 7. "Free" foods 0 .00 3 11.54 Sub Total _2 _5 Medicines 1. Reasons f o r heparin 0 .00 0 .00 2. Precautions with Heparin 0 .00 0 .00 3. Reasons for Imferon 0 .00 0 .00 Sub Total _0 _0 Cannula 1. Major cannula problem 3 11.54 0 .00 2. Prevention - cannula removal 1 3.85 0 .00 3. Prevention c l o t t i n g 0 .00 0 .00 4. Detection - c l o t t i n g 7 26.92 0 .00 5. Treatment c l o t t e d shunt 2 7.69 0 ;00 6. Infection signs 0 .00 0 .00 7. Protection of limb 0 .00 0 .00 8. Emergency 0 .00 0 .00 Sub Total 13 _0 D i a l y s i s 1. Function - kidney machine 0 .00 0 .00 2. Machine tests 0 .00 0 .00 3. Dialysate samples 3 11.54 0 .00 4. Reason chloride test 0 .00 0 .00 5. Treat, varying chloride r e s u l t s 0 .00 0 .00 6. Conductivity meter 0 .00 0 .00 7. High venous pressure alarm 3 11.54 0 .00 8. Low venous pressure alarm 1 3.85 0 .00 9. S e l f monitoring 4 15.38 . 0 .00 10. Use of a i r rinse pump 0 .00 0 .00 11. Drop i n B.P. during d i a l y s i s 0 .00 0 .00 12. Causes of B.P. change 1 3.85 3 11.54 13. Treatment p o s t - d i a l y s i s B.P. 0 .00 1 3.85 14. Treatment missed d i a l y s i s 0 .00 0 .00 15. Identification-membrane rupture 0 .00 0 .00 16. Treatment membrane rupture 0 .00 0 .00 Sub Total 12 _4 Medical Problems 1. Sensory foot changes 2 7.69 2 7.69 2. Itchy skin 1 3.85 0 .00 3. Venospasm 0 .00 0 .00 4. F e v e r / c h i l l s 0 .00 0 .00 5. Defective calcium absorption 0 .00 4 15.38 Sub Total _3 _6 Care of Dialyzer (technical) 1. Storage time 5 19.23 0 .00 2. Reasons for storing 0 .00 0 .00 3. Use of cellophane 1 3.85 0 .00 Sub Total 6 0 GRAND TOTAL 38 27 Discrepancies due to rounding procedure. Note: For exact wording of each topic, see Appendix B-Part B. 88 lead to a communication gap between patients and s t a f f , leading to f a i l u r e to report s i g n i f i c a n t changes i n health status. Preparation and Hook-up S k i l l s S t a f f members were asked to estimate how w e l l patients were able to prepare the Drake-Willock and K i i l d i a l y z e r and to complete the hook-up procedure. The majority estimated patients to be p r o f i c i e n t i n per-forming both tasks (Table 23). When asked what steps i n the preparation of equipment patients would be l i k e l y to omit i f they were i n a hurry, the s t a f f thought patients would omit security checks, modify the chloride and c l i n i t e s t s , and the rinse procedure. In the hook-up procedure patients would probably omit cleansing the cannula s i t e s , modify the dressing procedure, omit safety checks of the monitors, forget to take t h e i r v i t a l signs and the heparin. I t seems that although s t a f f perceive patients to be knowledgeable about the preparation and hook-up procedures they suspect that patients do not adhere to prescribed p r a c t i c e s . The s t a f f thus appear to imply that the patient tends to disregard the importance of c e r t a i n elements of the t r a i n i n g program, a f a c t not supported by the patients. PATIENT LEARNING NEEDS Staf f members estimated that patients knew enough i n only two areas, s a l t retention and the use of s a l t s u b s t i t u t e s . They believed that patients wanted to know about the cause of blood pressure changes and uremia, weight imbalance management, the allowable e l e c t r o l y t e intake, TABLE 23 Staf f Estimates of Patient S k i l l to Prepare D i a l y s i s Equipment and the Hook-up Procedure Preparation of Equipment 0 Hook-up Procedure^ T o t a l Male Female Total Male Female Level of Competency N % N % N % N % N % N % Extremely w e l l 10 62.50 5 31.25 5 31.25 7 41.18 2 11.76 5 29.42 Very w e l l 3 18.75 0 .00 3 18.75 6 35.29 2 11.76 4 23.53 F a i r l y w e l l 2 12.50 0 .00 2 12.50 3 17.65 2 11.76 1 5.88 Don't know 1 6.25 0 .00 1 6.25 1 5.88 0 .00 1 5.88 Poor 0 .00 0 .00 0 .00 0 .00 0 .00 0 .00 Very poor 0 .00 0 .00 0 .00 0 .00 0 .00 0 .00 Extremely poor 0 .00 0 .00 0 .00 0 .00 0 .00 0 .00 Tot a l 16 a 17 b 19 s t a f f members had been involved with the preparation of d i a l y s i s equipment aspect of the ren a l program. Three declined to estimate the patient s k i l l i n this task. 20 s t a f f members had been involved with the hook-up procedure aspect of patient care. Three declined to estimate patient s k i l l i n performing this task. c 2 Male *- female differences not s i g n i f i c a n t (x = 1.37, df = 3). d 2 Male - female differences not s i g n i f i c a n t (x = 1,85, df = 3). 00 VO 90 e s p e c i a l l y sodium, innovations i n the treatment of kidney disease, the e f f e c t s of drinking unlimited f l u i d s and research about food and d i e t a l t e r a t i o n s . In a d d i t i o n to seeking more facts about heparin and imferon, patients might want to know more about the reasons f o r taking the pre-scribed medications. When considering cannula management, the s t a f f assumed that patients would want to know more about the emergency treatment of cannula separation, methods to protect the cannulated limb and the prevention and treatment of cannula problems such as c l o t t i n g , i n f e c t i o n and general cannula dysfunction. The s t a f f estimated that patients were i n t e r e s t e d i n the conse-quences of and treatment f o r adjusting the d i a l y s i s procedure. S p e c i f i -c a l l y , they f e l t that patients would want a d d i t i o n a l d e t a i l s about the recognition and management of membrane rupture and abnormal chloride t e s t s , blood pressure changes, monitoring procedures, the discontinuation of d i a l y s i s and s t o r i n g the K i i l d i a l y z e r . The s t a f f also stated that patients would probably want more information about the Drake-Willock machine maintenance, about coping with d i a l y s i s , about new kidney machines and transplants, about the cause and management of medical problems, and the psychological e f f e c t s of d i a l y s i s . When s t a f f members were asked to estimate patient requests for a d d i t i o n a l information about the d i a l y s i s procedure, only two s t a f f members thought that patients would express i n t e r e s t i n knowing the reasons for the standard t e s t . Most s t a f f members believed that patients would not want to know about leaving out steps i n the hook-up procedure as the 91 c r i t i c a l nature of th i s task dictated close adherence to established patterns. In summary, s t a f f members indicated that patients lacked informa-t i o n i n several areas and might wish to increase t h e i r l e v e l of knowledge, p a r t i c u l a r l y that r e l a t i n g to d i a l y s i s . INFORMATION SOURCES USED BY PATIENTS From a l i s t of 13 possible sources of information s t a f f members were asked to pick out those that could have been the l i k e l i e s t sources for the patient, and to indic a t e to what sources the patient could have thereafter turned to i n order to obtain a d d i t i o n a l information. A c t u a l Information Sources Used  Knowledge The majority of the s t a f f estimated that the patient would i d e n t i f y the renal unit physician and the nurse as his p r i n c i p a l sources of i n f o r -mation about kidney f a i l u r e , medications, cannula care, medical problems, and, with the d i e t i t i a n , about dietary matters. Many of the s t a f f thought that the patient had learned about d i a l y s i s from the physician, technician and nurse respectively, and that the physician and technician were the p r i n c i p a l sources from whom he had learned about t e c h n i c a l matters. Pro-f e s s i o n a l l i t e r a t u r e was perceived to be a minor source. The s o c i a l worker was regarded as an information source i n two areas only, d i a l y s i s and medical problems. When estimating patient use of non-renal unit information sources, the s t a f f indicated that the patient would probably report h i s personal 92 physician as one of the major sources for a l l health topics except cannula care and t e c h n i c a l matters. Other patients were perceived to have been a major information source about a l l t o p i c s . The s t a f f e s t i -mated that the patient would report learning a great deal from his own experiences (Table 24). Miscellaneous sources (Table 34, p. 144) were not h i g h l y regarded. Past Concerns A l l s t a f f members estimated that the patient had used the physician as a prime source of information r e l a t i n g to past Concerns. Other re n a l unit sources i d e n t i f i e d were the nurse (92.31%), the s o c i a l worker (84.62%), the d i e t i t i a n (69.23%), the technician (38.46%) and p r o f e s s i o n a l l i t e r -ature (19.23%). The s t a f f assumed that the nurse would have been consulted by the patient f o r a l l past Concerns with minimal input for matters dealing with finances and i n a b i l i t y to carry out the marriage r o l e . The physician i n the renal unit was reported to be a major source f o r the patient to deal with a l l problems, being most extensively used to cope with p h y s i c a l symptoms of i l l n e s s and cannula care, and infrequently consulted about dying and f e e l i n g s about the unknown. While the s t a f f perceived the patient to have asked the s o c i a l worker f o r help with a l l past Concerns, her greatest contribution was seen i n dealing with f i n a n c i a l matters, changing l i f e goals, jobs, and the patient's a b i l i t y to work. The s t a f f assumed that the patient had used p r o f e s s i o n a l l i t e r a t u r e p r i m a r i l y for information about reduced income and d i e t management. The d i e t i t i a n was seen as a source p r i n c i p a l l y for dietary Concerns, however, some of the TABLE 24 Staff Estimates: Information Sources which Patients used to Learn to Manage Kidney Conditions Knowledge Sources Renal Unit Non-renal Unit Pro • Own Own Rela-Component R.N. % + M.D. % Tech. % Diet. % L i t % • S.W. % Pats. % M.D. % Exp. % t i v e % Misc. % Chronic kidney f a i l u r e 62.20 65.38* 29.92 57.69 15. 38 .00 30.77 46.15 11.54 11.54 3.85 Diet 57.69* 57.69 7.69 57.69 7. 69 .00 199233 15.38 7.69 3.85 .00 Medications 61.54* 50.00 30.77 .00 • 00 .00 19.23 11.54 3.85 .00 3.85 Cannula care 53.85* 53.85 23.00 .00 15. 38 .00 38.46 7.69 19.23 .00 3.85 D i a l y s i s 88.46* 84.62 88.46 38.46 23. 08 3.85 53.85 53.85 19.23 3.85 3.85 Medical problems 61.54* 61.54 23.08 7.69 7. 69 3.85 n:.54, 15.38 11.54 3.85 .00 Technical Cdialyzer care) 73.08 7.69 73.08* .00 7. 69 .00 7.69 .00 .00 .00 .00 The data presented are defined as the number of times each information source was ci t e d f o r each category /.byt'the229ssfeaf f uimembers. These percentages exceed 100 because most of the s t a f f reported more than one source of information. The starred item appeared as source of f i r s t information. Key: R.N. = Registered Nurse Pro. = Professional Pats. = Patients Own M.D. = Own Physician Own Exp. = Own Experience M.D. Tech. Diet. = Medical Doctor = Technician ro. L i t . S.W. Professional • L i t e r a t u r e = S o c i a l Worker D i e t i t i a n Misc. = Miscellaneous VO 94 areas i n which the patient could have consulted the d i e t i t i a n were those usually not considered to be i n her f i e l d of p r o f e s s i o n a l r e s p o n s i b i l i t y . These included change i n jobs, residence and f a m i l i a l r e l a t i o n s , f i n a n -c i a l matters and cannula problems. More than 50 per cent of the s t a f f perceived that the patient had probably consulted r e l a t i v e s (73.08%), or other patients (57.69%). Many s t a f f members reported that the patient had used h i s own experiences (46.15%), h i s personal physician (34.62%) and miscellaneous sources (38.46%) (Table 25). As estimated by the s t a f f r e l a t i v e s had been consulted by the patient with the following problems receiving p r i o r i t y : change i n s o c i a l r e l a t i o n s with friends and co-workers, reduced s o c i a l a c t i v i t y , f i n a n c i a l and work d i f f i c u l t i e s and change i n residence. S t a f f members f e l t that the patient probably had contacted other patients f o r a l l past Concerns except feelings about the unknown, depression and i n a b i l i t y to carry out the marriage partner r o l e . The s t a f f assumed that the patient had r e l i e d on h i s own experiences to deal with a l l but two Concerns, depression and f e e l i n g s about the unknown. The personal physician was regarded as hav-ing t o l d the patient how to deal with a l l but two issues, dying and f e e l -ings about the unknown. Miscellaneous sources (Table 35, p. 145) were perceived by s t a f f members to have been used by the patient to deal with 18 issues with the greatest use noted for changes i n s o c i a l r e l a t i o n s with friends and co-workers. TABLE 25 Staf f Estimates of Patients Use of Information Sources f o r Concerns: Past and Present Sources Renal Unit Non-renal Unit Pro. Rela- Own Own Concerns M.D. % R.N. % S.W. % Diet. % Tech. % L i t . % t i v e % Pats. % Exp. % MisG.-% M.D. % Past 100.00* 92.31 84.62 69.23 38.46 19.23 73.08 57.69 46.15 38.46 34.62 Present 96.15* 88.46 76.92 29.92 15.38 23.08 65.38 42.31 50.00 38.46 61.54 * The starred item appeared as source of f i r s t information. The data presented are defined as the number of times each information source was c i t e d f o r each category by the 29 s t a f f members. Key: M.D. R.N. S.W. Medical Doctor Registered Nurse S o c i a l Worker Diet. = D i e t i t i a n Tech. = Technician Pro. = Professional L i t . L i t e r a t u r e Pat. = Patients Own Exp. = Own Experience Own M.D. = ipersohaliPhysician Misc. = Miscellaneous VO 96 Preferred Information Sources Learning Needs and Present Concerns The s t a f f estimated that the patient's preference i n the matter of information sources was supported by s t a f f estimates of the patient's actual use of those p a r t i c u l a r sources, namely, the physician i n the renal unit, the nurse, d i e t i t i a n and technician, and, minimally, pro-f e s s i o n a l l i t e r a t u r e and the s o c i a l worker. In the matter of non-renal unit sources too, the s t a f f ' s estimates of patient preferences coincided with estimates of a c t u a l use (Table 26). Miscellaneous sources (Tables 36, 37, pp. 146-147), were not considered major sources of information. The s t a f f estimated that the patient would be l i k e l y to use the physician more than others for present and future information (Table 25, p. 95). They reported that patients would ask the nurse for a i d i n solving a l l current problems but with the greatest use f o r matters deal-ing with the unknown, depression, dependency on treatment and cannula care. They f e l t that the patient would probably contact the s o c i a l worker p r i n c i p a l l y i n matters r e l a t i n g to the i n a b i l i t y to carry out the worker ro l e and changing f a m i l i a l r e l a t i o n s . The s t a f f i n d i c a t e d that the patient would r e f e r to p r o f e s s i o n a l l i t e r a t u r e to deal with such Concerns as feelings about the unknown, i n a b i l i t y to carry out r o l e as marriage part-ner, f i n a n c i a l and dietary problems. The d i e t i t i a n ' s major contribution was thought to be information about d i e t , while the technician's c o n t r i -bution was information about coping with feelings about the unknown. In considering the non-renal unit sources, the s t a f f perceived that the patient would say that he would consult r e l a t i v e s to deal with a l l but one Concern—change i n mental status. Relatives were viewed as TABLE 26 Staf f Estimates: Preferred Information Sources which Patients use to Learn more about Their Kidney Condition Sources Learning Renal Unit Non-renal Unit Pro. Own Own Rela-Needs R.N. %+ M.D. % Tech. % Diet. % S.W. % L i t . % M.D. % Pats. % Exp. % t i v e % Misc. % Chronic needs f a i l u r e 65.38 69.20* 15. 38 46 .15 15.38 3.85 34.62 29.92 15.38 15.38 .00 Diet 46.15 50.00 3. 85 46 .15* .00 11.54 7.69 19.23 .00 .00 3.85 Medications 53.85* 46.15 23. 08 .00 .00 3.85 19.23 7.69 .00 .00 .00 Cannula care 53.85* 53.85 7. 69 3 .85 .00 3.85 15.38 30.77 19.23 .00 7.69 D i a l y s i s 88.46* 88.46 84. 62 15 .38 15.38 15.38 30.77 29.92 7.69 7.69 3.85 Medical problems 57.69* 57.69 15. 38 7 .69 .00 .00 34.67 11.54 .00 3:85. 3.85 Technical (dialyzer care) 69.20 11.54 73. 08* .00 .00 3.85 .00 11.54 .00 .00 .00 + The data presented are defined as the number of times each information source was c i t e d f o r each category by the 29 s t a f f members. The percentages exceed 100 because many of the s t a f f reported more than one source of information. The starred item appeared as source of f i r s t information. Key: R.N. = Registered Nurse Diet. = D i e t i t i a n Own M.D. = Personal Physician M.D. = Medical Doctor S.W. = S o c i a l Worker Pats. = Patients ^ Tech. = Technician Pro. = Professional Own Exp. = Own Experience L i t . L i t e r a t u r e Misc. = Miscellaneous 98 being consulted p r i m a r i l y f o r change i n l i f e goals, f e e l i n g s about the unknown, change i n ma r i t a l r o l e and body image. They f e l t that the patient would consult h i s personal physician frequently with the great-est number of requests f o r information about dealing with fee l i n g s about the unknown, i n a b i l i t y to carry out the marriage r o l e , dependency on treatment and depression. They thought that the patient would prob-ably r e f e r to other patients f o r a l l current Concerns except p h y s i c a l symptoms from treatment and cannula care. The s t a f f perceived the patient as r e l y i n g on personal resources to deal with a l l but two issues, f e e l i n g s about the unknown and mental state, and indicated that the patient would use personal experiences p r i m a r i l y to deal with acceptance of chronic i l l n e s s , p h y s i c a l symptoms of i l l n e s s and treatment. Miscellaneous sources (Table 37 } p. 147) were regarded by s t a f f as being consulted by the patient f o r a l l Concerns except p h y s i c a l symptoms of i l l n e s s and change i n residence. Staff assumed that the patient would prefer such information sources to deal with f e e l i n g s about the unknown, change i n l i f e goals, depression and i n a b i l i t y to carry out t h e i r marriage r o l e . The knowledge of s t a f f estimates i n th i s regard help to compare them with the patient's i d e n t i f i c a t i o n of his used and preferred informa-t i o n sources. The r e s u l t of the comparison would be an important consider-a t i o n i n program modification. The f a c t that s t a f f members estimate that patients know les s than they ought, suggests that the program does not meet the patients' needs. But i t may also be a r e f l e c t i o n of the patients' lack of motivation or TABLE 27 Staf f C h a r a c t e r i s t i c s : Information Seeking No. of Possible Observed Standard Mean Variable Subjects Range Range Mean Deviation Male Female Sta f f estimates about patients: 1. Knowledge 26 0-300 30-160 94 .2 42 .8 66.6 115.5 2. Learning needs 26 0-59 3-105 50 .2 28 .8 37.4 85.3 3. Past Concerns 28 0-22 0-20 9 .8 5 .2 8.6 10.5 4. Present Concerns 28 0-22 0-21 8 .8 5 .2 11.5 7.5 5. Number of information sources used f o r knowledge items 26 0-624 15-132 69 .5 34 .1 48.6 82.6 6. Number of information sources used f o r past Concerns 28 0-286 0-169 27 .4 30 .4 18.6 32.0 7. Number of information sources preferred f o r learning needs 26 0-715 5-128 56 .3 34 .8 36.5 68.5 8. Number of information sources preferred for present issues 28 0-286 0-107 25 .1 23 .9 23.2 26.2 * Male - female differences are s t a t i s t i c a l l y s i g n i f i c a n t , * Male ~ female differences almost s i g n i f i c a n t . 100 t h e i r a b i l i t i e s to learn. S t a f f estimates that patients want to know more about kidney f a i l u r e and d i a l y s i s than they do, contradicts t h i s "low motivation" i n t e r p r e t a t i o n . The great differences i n the s t a f f estimates between possible and a c t u a l information sources suggests that the s t a f f may not be r e a l i s -t i c i n t h e i r understanding about how patients use a v a i l a b l e information sources (Table 27, p. 99). STAFF CHARACTERISTICS: INTERRELATIONSHIPS A number of b i o g r a p h i c a l variables have been taken into account i n this study to assess the nature of response e l i c i t e d from the s t a f f with respect to the patient's l e v e l of health knowledge, learning needs, information sources, and socio-emotional Concerns. S o c i a l Status As measured by the Blishen Occupational Rating Scale high s o c i a l status scores were associated with: a longer residency t r a i n i n g (r=.99), length of time involved with home hemodialysis (r=.39), age (r=.41) and less involvement i n patient-teaching (r=-..44) Experienced s t a f f members who have had residency t r a i n i n g have been i n p r a c t i c e longer (r=.40) and tend to devote fewer hours per week to teaching patients (r=-..86). Those members involved the longest with home hemodialysis are more l i k e l y to have been i n p r a c t i c e longer (r=.37), to have had residency t r a i n i n g (r=.22) and to spend les s time i n teaching patients (r=-.19) (Table 28). TABLE 28 Correlation Coefficients: Staff Variables 1 2 3 5 6 7 8 9 10 11 12 13 STAFF CHARACTERISTICS 1. Ago 1.00 2. Duration HHD .35 1.00 3. Tice weekly teaching -.04 -.19 1.00 4. Duration resit? ;>.ncy .23 .22 -.86, 1.00 .05 level • .37 5. Duration practice • 37 .02 • 40 1.00 .01 level » .48 6. Rotter's I-E Score .03 .12 -.01 .08 .32 1.00 7. Occupation Score .41 .39 -.44 .99 .06 • 38 1.00 STAFF ESTIMATES ABOUT PATIENTS 8. Knowledge -.47 -.08 .30 sM .003 -.15 1.00 9. Learning needs -.47 -.16 .24 .10 -.007 -.28 _.79 1.00 10. Past Concerns -.13 -.05 -.28 -.79 .005 .13 -.24 .05 -.14 1.00 11. Present Concerns ••.22 .05 • 39 • 46 -.22 -.15 .15 .03 .18 ^61 1.00 12. No. information sources used fcr knowledge -.46 -.11 .24 -.12 -.42 -.47 _j88 _J2 -.14 .14 1.00 13. No. information sources for learning reeds -.50 -.24 .35 .22 -.14 -.42 -.62 -.23 .20 _.JB7 1.00 14. No. information sources used for past Concerns -.15 -.15 -.13 -.86 -.01 .19 -.05 .17 .03 .47 -.22 .06 .03 15 No. information sources for present Concerns -.26 .11 .009 -.18 .25 .01 .16 .45 -.42 • 67 Single lined » .05 level Double lined * .01 level 102 Internal-External Control of Reinforcement Scale E x t e r n a l i t y on the Control of Reinforcement Scale was associated with higher s o c i a l status scores (r=.38) and length of p r a c t i c e (r=.32) (Table 26, p. 97). Concerns: Past and Present Staff members who had undergone the shortest residency t r a i n i n g made the highest estimates about the numbers of past issues patients would report (r=-.79) (Table 28, p. 101). Residency t r a i n i n g may make them more knowledgeable and discriminating about the management of the d i a l y s i s patient and h i s problems and more perceptive of the patient's past problems and more cognizant of actual Concerns. I t was found that the longer residency t r a i n i n g and weekly teaching contact a s t a f f member had with patients the more r e a l i s t i c and accurate h i s estimate was about patient Concerns. Estimates of Patient's Level of Knowledge and Learning Needs Staff members with longer residency t r a i n i n g (r=.70), low s o c i a l status scores (r=-.57) and younger s t a f f (r=-.47) estimated that the patient was knowledgeable about h i s condition (Table 28). The estimates of the younger s t a f f members may be due to t h e i r c l o s e r acquaintance with recent developments i n renal care through present-day advances i n c u r r i c u l a . That s t a f f members with low s o c i a l status scores were found to estimate the patient as knowledgeable may be due to the fa c t that nurses, who have close involvement with patients, constitute the larges t group with low scores. 103 One-way Analysis of Variance revealed differences i n s t a f f e s t i -mates of the patient's knowledge by s t a f f member sex (F=8.8, df=l,24 p .01),marital status (F=4.6, df=2,23 p .05) and whether s t a f f members had a d d i t i o n a l general education (F=6.4, df=l,24 p .05). Single female s t a f f members with a d d i t i o n a l general education estimated the patient to have a high knowledge score and they had a higher mean estimate than divorced or widowed female s t a f f members. Most of the sing l e female s t a f f are registered nurses i n t e n s i v e l y involved i n the d i a l y s i s teaching program. The majority of the male respondents are technicians whose r e s p o n s i b i l i t i e s i n the teaching program r e l a t e p r i n c i p a l l y to te c h n i c a l matters. Thus differences i n the estimated mean scores may r e l a t e more to areas of p r a c t i c e r e s p o n s i b i l i t y than sex. Married female s t a f f members had a higher mean estimate than did married male s t a f f members and higher estimates were given by the female than the male s t a f f members with a d d i t i o n a l general education, which suggests that a d d i t i o n a l education makes s t a f f members better aware of how much the patient knows about h i s care. No s i g n i f i c a n t r e l a t i o n s h i p s were noted with the other biograph-i c a l c h a r a c t e r i s t i c s . Estimates of Patient's Use of Information Sources Staff estimates of the patient's more extensive use of sources f o r information was associated with: lengthy residency t r a i n i n g (r=.81), low s o c i a l status scores (r=-.47), lower age (r=-.46) and an i n t e r n a l o r i e n t -ation on the Control of Reinforcement Scale (r=-.42) (Table 28, p. 101). 104 One-way Analysis of Variance revealed that s t a f f estimates va r i e d according to sex (F=7.89,, df=l, 25 , p<.01), renal unit of employ-ment (F=4.23, df=2,25, p<.05) and m a r i t a l status (F=4.06, df=2,25, p<.05) . The s t a f f members' estimates of the number of sources the patient used f o r information to solve past problems were associated with shorter residency t r a i n i n g (Table 28, p. 101). Members of the s t a f f who estimated the patient as l i k e l y to explore many sources f o r a d d i t i o n a l information were the younger s t a f f members (r=-.50), those with low s o c i a l status scores (r=-.62) and those with an i n t e r n a l o r i e n t a t i o n on the control of Reinforcement Scale (r=-.42) (Table 28). Summary Younger s t a f f members and those with low s o c i a l status scores estimated that the patient would be knowledgeable about h i s health problem, that he would express many a d d i t i o n a l needs f or information and that he had used and intended to use many information sources. S t a f f members who spent more time i n patient-teaching estimated that the patient would i d e n t i f y many current and few past socio-emotional Concerns. Sta f f members with longer residency t r a i n i n g estimated the patient to be knowledgeable about h i s condition and to have used many sources to obtain that knowledge. They also perceived the patient to report many present Concerns. In comparison, s t a f f members with shorter residency t r a i n i n g estimated the patients would express many past Concerns and to have consulted many sources to solve these problems. Those with low scores on the Internal-External Control of Reinforcement Scale estimated 105 that the patient had used and intended to use many sources to obtain information. S t a f f estimates of the patient's l e v e l of knowledge v a r i e d according to sex, ma r i t a l status and a d d i t i o n a l general education. Single female s t a f f members estimated the patient to be more knowledgeable about h i s condition and to have used more sources to obtain that information. The renal unit i n which the s t a f f members were employed was a s i g n i f i c a n t f actor i n t h e i r estimation of the number of information sources used by the patient to learn about h i s condition (Table 28, p. 1Q1). COMPARISON: PATIENT AND STAFF FINDINGS This section compares patient and s t a f f estimates of the patient's socio-emotional Concerns, l e v e l of knowledge, learning needs, d i a l y s i s preparation a c t i v i t i e s and sources of information. The patients knew c o r r e c t l y almost twice as many items about t h e i r health problem and i t s management as s t a f f members expected. Patients wanted h a l f as many a d d i t i o n a l health information items as the s t a f f thought they did. S t a f f members estimated almost twice as many past socio-emotional Concerns than were reported by pat i e n t s . They also conjectured that patients would have over four times more current Concerns than was i n fac t reported by patients. No differences existed between s t a f f members and the patient i n t h e i r perceptions of the number of information sources used i n i t i a l l y by the patient. Differences existed among the s t a f f and the patients i n terms of other information sources used or preferred. S t a f f -members estimated patients to have used more than three times the number of information sources to deal with past Concerns than was a c t u a l l y reported 106 by patients. They also estimated that patients would probably consult twice as many information sources f o r a d d i t i o n a l health information and 19 times as many sources for information about current socio-emotional Concerns than patients ind i c a t e d (Table 29). TABLE 29 Means and T-Values f o r Information-Seeking: Patients vs. Sta f f Variables Patients Health Profes-sionals T-Value D.F. TPROB. FPROB. Knowledge Score 113.659 84.4827 2 .956 36 0.005 0.000 Information Score-knowledge items 62.1817 62.3792 -0 .026 34 0.928 0.000 Learning needs 23.6362 45.0689 -3 .356 36 0.002 0.000 Information Score-learning needs 21.3180 50.4826 -4 .033 33 0.000 0.000 Past Concerns Score 5.47726 9.86206 -3 .696 71 0.001 0.620 Information Score-past Concerns 7.24999 27.4827 -3 .497 31 0.002 0.000 Present Concerns 1.93181 8.86206 -6 .784 35 0.000 0.000 Information Score-present Concerns 1.34090 25.1723 -5 .348 28 0.000 0.000 Rotter's I-E Score 5.27272 7.37930 -1 .772 71 0.077 0.971 Socio-emotional Concerns: Past and Present St a f f members estimated the patient to have had past Concerns about every problem. This observation was shared i n varying degrees by pat i e n t s . A comparison of the s i x problems mentioned most often by s t a f f 107 members revealed that they f e l t the patient to have been concerned about d i e t , finances, d i f f i c u l t i e s with cannula care, changes i n residence and s o c i a l r e l a t i o n s h i p s . Patients, on the other hand, reported past Con-cern that centred on the e f f e c t s of i l l n e s s : physical symptoms, changing l i f e goals, a l t e r e d worker roles and coping with chronic i l l n e s s . In the opinions of the s t a f f , the patient would also express immediate worries about a l l of the 22 issues. In actual f a c t , two issues, dying and change i n residence were of no immediate concern to the patient. F a i l u r e to i d e n t i f y dying as a current Concern may r e f l e c t use of denial as an emotional defense by the patient group. Furthermore, male patients indicated that change i n s o c i a l r e l a t i o n s with friends and family, accep-tance of c h r o n i c i t y or f e e l i n g s about the unknown were of no immediate concern. Female patients did not mention change i n jobs, d i e t regimen or p h y s i c a l symptoms of i l l n e s s as present problems. The f a c t that s t a f f members perceived female patients to report many problems i s i n contrast with patient findings i n which male patients a c t u a l l y indicated concern over more past issues. These f i n d -ings may be based on perceived sex r o l e r e s p o n s i b i l i t i e s . Female s t a f f members may regard female patients as being concerned about numerous problems which might influence family functioning, whereas, i n actual f a c t , i t may be the male patients who are overly concerned. Not only did the s t a f f members estimate patients to have been con-cerned about numerous past issues but they also perceived that the patient continued to be bothered by many Concerns. In actual f a c t only two problems were i d e n t i f i e d by more than 20 per cent of the patients as of current Concern. These were depression, and i n a b i l i t y to perform the r o l e of breadwinner/housewife (Figure 9). 103 Per Cent of Concerns Staff Patients 100 90 80 70 60 50 40 30 20 10 0 10 20 30 40 50 60 70 80 90 100 T Physical symptoms of illness L^T-.^— *<7.. •EI Change i n l i f e goals Diet regimen Financial problems Reduced income I, Inability to work Acceptance chronic illn e s s Inability to f i l l worker role Dependency on treatment Physical symptoms of treatment Cannula problems 1__ • Reduced social activity Change in jobs Change i n residence \S S ^ ! S S ^ 1 y s y / ' s s Key Concerns: Past 1 S S S .S 1 i 1 . ' s s / 1 Change in social relations, friends, co-workers Mental state—confusion Depression .^ Change in social relations family Change in body image A / / S / / / s. Present | I Total Concern responses: Past : Patients 249 Staff 286 - 535 Present: Patients 86 Staff 257 = 343 /• / / S ^ ' > "I / / s s Inability to carry out marital role I / / / Feelings about the unknown Dying J Z Z 3 Tigure 9. Patient and Staff Perceptions of Patient Concerns: Past and Present 109 Some of the Concerns i d e n t i f i e d i n th i s study have been reported also by Aydelotte (1967), Easthouse (1968), Holcomb and Macdonald (1973) and Shulman and Percy (1974). In comparison, Aydelotte (1967, p. 8) re-ported that the f i v e major Concerns of patients, i n order, were: symptoms of i l l n e s s or those a r i s i n g from treatment, acceptance of chronic i l l n e s s and dependency on treatment, change i n r o l e , dietary regimen and trans-portation and r e l o c a t i o n . In that study nurses i d e n t i f i e d the patient's f i v e major Concerns, i n order, as: acceptance of chronic i l l n e s s and dependency on treatment, change i n ro l e , symptoms of i l l n e s s or from therapy, dietary regimen and maintenance of shunt and cannula. . In a study of future home d i a l y s i s patients and th e i r nurses, Easthouse (1968, p. 71) noted that the three major patient Concerns were f i n a n c i a l d i f f i c u l t i e s and dis r u p t i o n of plan of l i f e , previous ex-periences and the unknown, nurses perceiving patients to be concerned about the unknown, t h e i r f e e l i n g s and p h y s i c a l state, pain and discomfort. Findings from e a r l i e r research as w e l l as the present study suggest differences between patients and s t a f f regarding i d e n t i f i c a t i o n of issues, his acceptance of his i l l n e s s and resignation to c h r o n i c i t y , or i t may re l a t e to the s t a f f ' s assessment a b i l i t i e s . A consideration of the differences between perceptions of the s t a f f and the patient of the patient's past problems i s mandatory i n order to a s s i s t the p o t e n t i a l home hemodialysis patient i n a meaningful way. By being aware of p a r t i c u l a r patient problems the s t a f f may be more h e l p f u l i n t h e i r e f f o r t s to help the patient to deal s u c c e s s f u l l y with such problems before they assume major proportions and a f f e c t the patient's 110 a b i l i t y to learn about his s e l f - c a r e . S i m i l a r l y , an awareness of current issues should enable s t a f f to a s s i s t the patient to focus more d i r e c t l y on h i s major problems. Such actions might conserve the patient's energies and enhance his a b i l i t y to learn about h i s health problem. Knowledge Component Both s t a f f and patients generally perceived that the patient was knowledgeable about h i s condition, but both groups acknowledged that the patient did not know about a l l aspects of care. S t a f f estimated that the patient knew enough about most questions regarding kidney f a i l u r e and d i a l y s i s . Exceptions were noted concerning knowledge about chronic kidney f a i l u r e , cannula care, s i x questions about d i a l y s i s and three about medical problems. In comparison, patients provided i n c o r r e c t answers to a l l seven areas under i n v e s t i g a t i o n . More s p e c i f i c a l l y , patients were knowledge-able about the most c r i t i c a l aspects of care. For instance, the majority of patients were well-informed about weight gain l i m i t a t i o n s between dialyses, the c a l c u l a t i o n of proteins, minerals and f l u i d intake, usage of s a l t substitutes, precautions regarding heparin use, emergency t r e a t -ment of cannula separation, management of a c l o t t e d cannula, coping with missed d i a l y s e s , membrane rupture and a l t e r a t i o n s i n blood pressure post-d i a l y s i s . Areas le s s known were: the purpose of and sampling procedure for the chloride t e s t , management of abnormal chloride l e v e l s , symptoms associated with changes i n t h e i r kidney condition or due to d i a l y s i s , the meaning of the various alarms, self-monitoring procedures, detection and prevention of c l o t t e d shunts and the p r o t e c t i o n of t h e i r cannulated limb. I l l Apparently the s t a f f assumed that the patient i s more knowledge-able about his condition than i s the case. Patient awareness of t h i s s i t u a t i o n may be r e f l e c t e d by h i s request f o r systematic reviews post-d i a l y s i s t r a i n i n g . Many patients suggested that p e r i o d i c reviews of materials discussed during t r a i n i n g plus news about improved management prac t i c e s would be b e n e f i c i a l . Several patients stated that they could not remember a l l that was taught during the t r a i n i n g period. Often they would memorize d e t a i l s i n order to pass the tests so that they could go home and become act i v e members of t h e i r community. A few patients men-tioned that they were p h y s i c a l l y so unwell that they could not concentrate upon learning a l l that they should know i n order to care for themselves. Some were more concerned about the ramifications of the e f f e c t of t h e i r i l l n e s s on the family than they were about learning the d a i l y s e l f - c a r e tasks. Experience i n the Home D i a l y s i s Training Program and the a c q u i s i -t i o n of information from a v a r i e t y of sources r e s u l t i n each patient acquiring a unique information base. Pre-discharge assessments provide s t a f f and patients with data about that information base. Patients seem to be suggesting that systematic assessments be c a r r i e d out at l a t e r dates so that the patients w i l l continue to learn current, relevant facts about t h e i r condition and i t s management. With respect to preparation and hook-up s k i l l s patients and the s t a f f agreed that the patient i s w e l l able to manage the d i a l y s i s pre-paration procedures. 112 Learning Needs While patients wanted some a d d i t i o n a l information about most questions they expressed a desire to know more about uremia, medications and complications r e l a t e d to d i a l y s i s and chronic kidney f a i l u r e , questions to which several patients had given i n c o r r e c t or "don't know" responses. I n t e r e s t i n g l y , although patients did not have much information about kidney disease, d i e t or d i a l y s i s , they did not i n d i c a t e a need f o r addi-t i o n a l information i n these areas. In comparison, the s t a f f stated that the patient would probably want to know more about a l l health topics except two areas r e l a t e d to d i e t . What w i l l be the e f f e c t on patient education i f the s t a f f perceive that the patient wants more information than he a c t u a l l y does? There i s a r i s k that such a s i t u a t i o n may contribute to an information overload for the patient, which i n turn may cause the patient to opt out of attend-ing to a d d i t i o n a l , c r i t i c a l features of s e l f - c a r e . This p o s s i b i l i t y i s suggested by the f a c t that most patients i n d i c a t e that they know enough about t h e i r kidney condition and d i a l y s i s and do not seem eager for a d d i t i o n a l information i n the t r a d i t i o n a l format. Dodge (1972) noted i n her study that patients wanted s p e c i f i c information about t h e i r condition, while nurses thought i t more important f o r them to know what to expect i n care. The findings of the present study seem to support Dodge's observations. Information Sources—Knowledge and Learning Needs Both patients and the s t a f f perceived the patient as obtaining most of his past and future information about chronic kidney f a i l u r e and 113 d i a l y s i s from renal unit sources rather than non-renal unit sources. Even though the patient regarded h i s personal experiences as the most preferred i n dealing with problems, he supported the s t a f f estimate that he would also use renal unit sources extensively. This f i n d i n g i s d i f f e r e n t than the claim made by E l l i s (1964), Feldman (1966), Wadsworth (1971) and Robinson (1974) that the chief sources of health information l i e outside the health care system. Both patients and the s t a f f indicated that the patient's chief source of health information was the renal unit with the physician being the most preferred source. I t was also indicated that the patient pre-ferred to obtain a d d i t i o n a l information from h i s personal physician rather than from the d i e t i t i a n , the s o c i a l worker, or from p r o f e s s i o n a l l i t e r a -ture. The s t a f f perceived the patient as p r e f e r r i n g the nurse, the physician i n the renal u n i t , the technician and the d i e t i t i a n as informa-t i o n sources (Figure 10). Renal unit p r o f e s s i o n a l s t a f f preferred by patients as informa-t i o n sources consisted of the physician and the nurse. This preference coincides with the findings of E l l i s (1964) and Wadsworth (1970) i n t h e i r studies of d i a b e t i c patients. They found, however, the public media to constitute another major category of information source. A s h i f t i n emphasis becomes apparent i n comparing these studies with the present: while both E l l i s and Wadsworth reported the doctor to be more important than the nurse as an information source, the present study finds the nurse to be the more important. Robinson i n her study of cardiac patients (1974) found a v a r i e t y of information sources among which the patient's personal Per Cenc of Sources Knowledge Learning Needs Renal Unit 100 60 50 40 30 20 10 0 10 20 30 AO 50 60 100 V" ' - " 1 ' • " ' 1 1 1 i 1 1 1 • if— [ / / / / / / / / / *• • — — • 1 1 i 1— — •' •• 114 M.D. • I Technician Professional literature Social worker Non-renal Unit Own experience M.D. personal Other Patients Relatives " 1 3 " 10 mm = 10% Total responses: Patients - 2966 j | Total responses: Patients • 955 j | Staff •= 1809 Staff - 1426 Figure 10." Information Sources used by Patients: Knowledge vs. Learning Needs: Patients vs. Staff 115 experience proved to be more i n f l u e n t i a l than the health team. This provides a p a r a l l e l with the learning s i t u a t i o n under consideration here. A l l categories of patients mentioned above are therefore dependent s i g n i f i c a n t l y upon the p r o f e s s i o n a l s t a f f f o r information, but d i a b e t i c and cardiac patients have access to a great deal of information through the mass media on an incomparably larger scale than renal patients on d i a l y s i s . Concerns: Past and Present In the opinion both of the s t a f f and patients the renal unit physician and nurse were the most prominent sources f o r information re-garding past and present problems. The s o c i a l worker was c i t e d as another valuable source by the s t a f f but not by the p a t i e n t s . Among the non-renal unit sources, personal experience and r e l a t i v e s were considered to be important sources by patients as by s t a f f . But patients and s t a f f d i f f e r e d i n that while the s t a f f named the personal physician and other patients as sources, patients did not, and instead mentioned miscellaneous sources such as employers, p s y c h i a t r i s t (Figure 11). C l i n i c a l Observations with Implications for Program Planning Most patients repeatedly expressed a wish to be regarded as normal i n d i v i d u a l s capable of functioning as productive family and community members. In addition they wanted the s t a f f to regard them as responsible persons with legitimate requests f o r assistance and information. These viewpoints were shared by many s t a f f members. Both the s t a f f and patients 116 Per Cent of Sources Past Concerns Present 100 60 50 40 30 20 10 0 10 20 30 40 50 60 100 Renal Unit s.w. _ J J J_ / / / \ . o , Technician Professional literature Non-renal Unit Own experience Relatives Miscellaneous M.D. personal Patients Total responses: Patients « 330 Staff - 797 I • t I E 2 10 mm - 10% Total responses: Patients = 59 | j Staff - 730 V7~X Figure 11 Information Sources used by Patients: Past vs. Present Concerns: Patients vs. Staff 117 f e l t that everybody needed to focus upon the p o s i t i v e aspects of the rena l patient's adjustment to d i a l y s i s therapy. Many s t a f f members indic a t e d that there was a need f o r expanding the continuing education program offered f o r r e n a l s t a f f . They wanted in - s e r v i c e programs that would a i d them i n developing s k i l l s to advise about socio-emotional Concerns. Several s t a f f members were made uncomfortable by the need to be-come involved i n such s e n s i t i v e patient Concerns as dying, sexual r e l a -tionships and adaptation to l i f e - l o n g treatment. They also wanted i n - s e r v i c e assistance i n dealing with t h e i r own tensions and h o s t i l i t i e s so that these fee l i n g s would not be transmitted to the patients. Also c i t e d was the need f o r p r o v i n c i a l i n t r a - u n i t meet-ings so that a l l health professionals could p a r t i c i p a t e i n the s o l u t i o n of problems r e l a t e d to the management of the r e n a l patient, e s p e c i a l l y socio-emotional Concerns. Several members of the s t a f f f e l t that health professionals needed to accept the patient as an active member of the health care team. In addition, there was a need for more community involvement i n the follow-up care of renal p a t i e n t s . Some of the s t a f f stated that renal unit s t a f f members should be v i s i t i n g the patients i n t h e i r home communities, and the majority of the patients supported t h i s viewpoint. More group sessions were desired by some patients so that they could learn about t h e i r condition and d i a l y s i s . While some s t a f f supported group learning sessions other s t a f f members stressed the need f o r i n d i v i -dualized teaching programs. 118 Several patients, r e l a t i v e s and s t a f f members had experienced insomnia, "nerves," and other p h y s i o l o g i c a l upsets such as dermatitis during t h e i r involvement i n the home hemodialysis program. A l l expressed a need to learn how to deal with disruptions of th i s nature. Adult educators should consider the preceding when developing the a f f e c t i v e component of patient education programs and when s e l e c t -ing methods and techniques to present the information. While the adult patient may take longer to acquire knowledge and s k i l l , the a c q u i s i t i o n hinges not on h i s age but rather on the pattern of i n t e r e s t , motivation and personal values that has become part of his personality over the years. The key to adult learning i s the desire to learn, therefore, the s i t u a t i o n should be designed to nurture that desire i n every f e a s i b l e way. Health educators should focus on providing a climate f o r learning, and fr e e i n g the patient to learn rather than burden-ing him with structured content and format. CHAPTER VI SUMMARY, CONCLUSIONS AND RECOMMENDATIONS If patient education i s to become an e f f e c t i v e part of modern health care p r a c t i c e , i t w i l l be necessary to i d e n t i f y patient learning needs. In the course-of t h i s study i t has been "observed that both patients and health professionals agree that patients have learning needs which are v i t a l to coping with t h e i r health problems and a l t e r e d l i f e s t y l e s . This study has attempted to determine: (1) the information that the home hemodialysis patient possesses about the management of h i s health problem, h i s socio-emotional Concerns and h i s s k i l l i n preparing for d i a l y s i s , and (2) the a d d i t i o n a l information that he might consider necessary to manage suc c e s s f u l l y h i s care at home, and (3) the informa-t i o n sources he used or preferred. A secondary aim was to make a compari-son between the perceptions of patients and those of the s t a f f about the patient's l e v e l of knowledge, learning needs, socio-emotional Concerns, d i a l y s i s preparation s k i l l s and information sources. Also explored was what r e l a t i o n s h i p e x i s t s between the health information estimates of the respondents and selected biographical c h a r a c t e r i s t i c s . An interview schedule and the Internal-External Control of Rein-forcement Scale were used to c o l l e c t data. The instruments were adminis-tered to 44 patients and 29 s t a f f members from three renal units located i n B r i t i s h Columbia. The study population consisted of patients on home d i a l y s i s . An increase i n the number of patients receiving t h i s form of 119 120 treatment has seen l i t t l e empirical work done to determine t h e i r learning needs. Five categories of s t a f f were selected on the basis of t h e i r involvement i n the Home Hemodialysis Training Program. CONCLUSION The findings of the study suggest the following general con-clus i o n s : 1. Greater knowledge was displayed by patients with higher s o c i a l status, fewer ch i l d r e n and higher l e v e l s of education. Those with c h i l d r e n and who were external i n i n o r i e n t a t i o n had a greater need f or a d d i t i o n a l health information. Patients who spent the longest time i n the Training Program admitted to the greatest number of present Concerns,. The farther patients l i v e d from the renal unit the more knowledgeable they were about preparation and hook-up procedures. Greater use of information sources was reported by patients with fewer chil d r e n , higher s o c i a l status, and who were older. Patients l i v i n g at greater distances from the renal unit, those with fewer c h i l d r e n and external i n or i e n t a t i o n preferred using more sources of information. 2. Staff members who were younger, had residency experience and lower s o c i a l status estimated that patients were knowledgeable about t h e i r health problem/. Staff members with shorter r e s i -dency t r a i n i n g estimated patients to have had more past Concerns while those with longer residency t r a i n i n g and more teaching 121 involvement f e l t that patients had more present Concerns. Staff members with longer residency estimated patients to have used more information sources, while those with shorter residency t r a i n i n g suggested that patients would prefer more information sources for past Concerns. Other variables to be considered are the s t a f f ' s a d d i t i o n a l general education, weekly patient teaching contact and the p a r t i c u l a r renal unit of employment. Patients and the s t a f f indicated that the patient i s generally knowledgeable about his health problem and i t s management as fa r as many of the c r i t i c a l aspects of care are concerned. Areas where the patient appeared misinformed or lacked informa-t i o n r e l a t e to knowledge about: kidney disease, e s p e c i a l l y factors causing symptoms, use of s a l t , c a l o r i e s and "free foods" i n the d i e t , detection of a c l o t t e d shunt, chloride t e s t i n g and decisions regarding abnormal chl o r i d e l e v e l s , the meaning of the various alarms, measures to deal with blood pressure changes, medical problems, and care of the d i a l y z e r . Generally, patients and the s t a f f perceived that the patient knew what to do i n the preparation of equipment and i n com-pl e t i n g the hook-up procedure for d i a l y s i s . Patients wanted to know hal f as many a d d i t i o n a l health i n f o r -mation items as the s t a f f thought they d i d . Staff members estimated almost twice as many past socio-emotional Concerns than were reported by patients. They also conjectured that 122 patients would have over four times more current Concerns than was i n fact reported by them. No differences existed between s t a f f members and patients i n t h e i r perceptions of information sources used i n i t i a l l y by the patient. D i f -ferences existed among the s t a f f and patients i n terms of other information sources used or preferred. RECOMMENDATIONS The differences between s t a f f and patient perceptions about the patient's expressed learning needs, past and present socio-emotional Concerns and the information sources used or preferred, may be due to many factors, one of which may be the s t a f f ' s assessment a b i l i t i e s . The s t a f f may know how to do t h i s but omit to do so, or may lack the a b i l i t y to assess patient needs. Tools should be developed to make such assess-ments easier. 1. An assessment t o o l could be used to i d e n t i f y : the patient's p r e d i a l y s i s l e v e l of health knowledge about h i s condition and i t s management, his expressed learning needs for information, his socio-emotional Concerns, the sources he uses and prefers to obtain information to deal with h i s problems. Such i n f o r -mation would provide the s t a f f with a patient p r o f i l e r e l a t e d to h i s information-seeking a c t i v i t i e s . Data from t h i s assess-ment t o o l could then be used to modify the Home D i a l y s i s Training Program to meet i n d i v i d u a l needs for information. Such a patient p r o f i l e would not only provide baseline 123 information about the patient's understanding of h i s con-d i t i o n on admission but i t could also provide an index of hi s knowledge upon discharge. Since s p e c i f i c learning needs could also be l i s t e d on the p r o f i l e , on-going reviews could be based upon concrete evidence of what the patient knows, wishes to know and needs to know. Such a data c o l l e c t i o n t o o l would provide information about differences i n the learning requirements of patients, and could also be used to record the patient's d i f f i c u l t i e s i n expressing h i s needs f or ad d i t i o n a l information a r i s i n g out of h i s ignorance of medical terminology. 2. Standards of care for home hemodialysis patients should also be established and followed f o r a l l patients receiving t h i s form of therapy. Since there seemed to be differences among the renal u n i t s , standards of care might help to even out these differences and to provide a baseline standard of care. Upon assessment the s t a f f could develop patient education programs according to the i d e n t i f i e d patient needs and the standards of care. Continuous assessment should enable the s t a f f to modify the educational o f f e r i n g s to s u i t s p e c i f i c patient r e -quirements . 3. I t i s important for the s t a f f to know how a patient learns, to i d e n t i f y those factors influencing the process of learning and to apply t h i s information to the patient s i t u a t i o n In addition to being knowledgeable about the teaching-learning process, 124 the s t a f f should be acquainted with i n s t r u c t i o n a l s t r a t e g i e s that f a c i l i t a t e patient learning. The design and implemen-t a t i o n of the program must be based also upon p r i n c i p l e s of adult education as they r e l a t e to mature learners. Many older patients mentioned that some s t a f f members did not allow the patients s u f f i c i e n t time to acquire new knowledge or to learn new s k i l l s . If the s t a f f do not possess these s k i l l s , continuing education programs should be established f o r the s t a f f to help them le a r n how to assess patient needs, how to meet those needs, how to use strategies to a s s i s t the patients to learn and how to evaluate the effectiveness of patient-education programs. Programs should also be i n s t i t u t e d to help the s t a f f to acquire the knowledge and s k i l l s e s s e n t i a l to a s s i s t patients deal with such s e n s i t i v e topics as dying and sexual r e l a t i o n s h i p s . The s t a f f from the renal units should develop a p r o v i n c i a l manual of i n s t r u c t i o n f o r patients on home hemodialysis. Many patients commented upon the need f o r simply written and i l l u s -trated references. While the s t a f f would assume r e s p o n s i b i l i t y for the references, patient input would be necessary to avoid complexity of concepts and language. The s t a f f should also consult s p e c i a l i s t s i n adult education, trained i n developing i n s t r u c t i o n a l materials. Demonstration and supervised p r a c t i c e should be supplemented with b r i e f handouts designed to describe such things as the d i a l y s i s equipment and i t s operation. A 125 handout summarizing the procedure and supplementing the demon-s t r a t i o n would probably be h e l p f u l i n reducing ,the anxiety of the patient and h i s family, and would be good for "at home" r e -views when the patient needs to check up on h i s p r a c t i c e . 7. Systematic ways of communicating information to the patients should be established on a regular basis. The p r o v i n c i a l newsletter recommended by patients and s t a f f might be one way to achieve t h i s . The s t a f f could use such a medium to inform patients., about new techniques i n care, or a d d i t i o n a l information about problems associated with home d i a l y s i s . A p r o v i n c i a l newsletter might also meet the needs of those patients who expect the s t a f f to inform them about any or a l l changes i n the management of t h e i r health problem. The newsletter should include a section on patient feedback. This section might have a non-structured part allowing f o r l e t t e r s and comments, and a structured part composed of s p e c i f i c topics of discussion, or even questionnaires, spread over several areas of patient education. 8. The Home D i a l y s i s Training Program should include an o r i e n t a -t i o n to the roles and r e s p o n s i b i l i t i e s of the s t a f f members involved i n that program. Such action might help to reduce the confusion and f a l s e perceptions that patients have about the a c t i v i t i e s of some of the s t a f f , e s p e c i a l l y the s o c i a l worker. The s t a f f perceptions that the s o c i a l worker was a much con-sulted information source for various aspects of care was not 126 supported by the patients. Many patients i n d i c a t e d that they preferred to receive most of t h e i r a d d i t i o n a l information from the physician i n the ren a l unit whom they regarded as the major authority figure and thus the person most knowledgeable about kidney disease and d i a l y s i s . As however the ren a l unit physician i s very involved i n the therapeutic program, he may not be the most a v a i l a b l e s t a f f member as an important source, and patients must be encouraged to use other s t a f f members and pr o f e s s i o n a l l i t e r a t u r e more extensively to obtain information. Patients need assistance also i n recognizing non-medical personnel such as the clergyman as a v i t a l member of the health care team. I n s t i t u t i o n s such as the University of C a l i f o r n i a San Francisco Medical Centre have, f o r some time, involved clergymen i n t h e i r renal programs, much to the benefit of the pa t i e n t s . 9. Anti c i p a t o r y counselling and guidance early i n the t r a i n i n g program might help to reduce the anxieties f e l t by the patients and t h e i r f a m i l i e s about t h i s method of treatment, and thus enable them to focus upon dealing with c r i t i c a l problems. Family members should be included i n the patient's learning a c t i v i t i e s more often than they have been i n the past. During the interviews i t became very apparent that the maintenance of the patient's d i a l y s i s regime and coping with an a l t e r e d l i f e s t y l e was very much a family a f f a i r . 10. In-service programs which focus upon tension management should be developed f o r p a t i e n t s , t h e i r f a m i l i e s and s t a f f members. 127 11. The renal program should be expanded to provide home v i s i t s for review of health information for assessment of the patient's a b i l i t y to prepare d i a l y s i s equipment and the hook-up procedure and for service checks of equipment. I f t h i s i s not possible, the renal unit s t a f f might orient public health nurses about home hemodialysis therapy so that they also can be of assistance to d i a l y s i s patients. 12. The patient's personal physician should be oriented to the renal program so that he may become a r e a d i l y a v a i l a b l e and knowledgeable l o c a l resource f o r patients, e s p e c i a l l y those l i v i n g at a distance. Although every attempt has been made i n t h i s study to examine s p e c i f i c areas of the management of the renal patient on home hemodialysis, i t should be obvious that much of the present discussion ought to be taken as s t a r t i n g points for further study and discussion. Many areas of i n f o r -mation and observation can be more f u l l y explored within the framework of a continuing workshop or seminar with health professionals i n renal units i f such a forum could be organized possibly by the Adult Education Research Centre and the D i v i s i o n of Continuing Education i n the Health Sciences. ROLE FOR ADULT EDUCATION Adult educators can provide consultative services to health pro-fe s s i o n a l s working i n programs such as the Home D i a l y s i s Training Program. In doing so they could a s s i s t program planners to use a greater v a r i e t y of sources of information, as w e l l as now to t r a i n patients to i d e n t i f y and 128 specify t h e i r informational requirements. The adult educator can a s s i s t health professionals to provide a climate for learning that would free the patient to learn rather than burdening him with structured content and format. In addition, they can a s s i s t also i n the design of i n s t r u c t i o n to ensure a s a t i s f a c t o r y l e v e l of learning by i d e n t i f y i n g i n s t r u c t i o n a l strategies appropriate for Home D i a l y s i s patients. POSSIBLE LINES OF FUTURE RESEARCH Further research should be undertaken to determine the reasons for the differences which exist between patient and s t a f f perceptions about home hemodialysis. Further study of the patient's psychological adjustment to d i a l y s i s and chronic i l l n e s s should provide data to a s s i s t him i n adapting to a l i f e - l o n g health problem. One curious phenomenon i s the denia l of problems by the patients. It would be worthwhile to examine whether such denial a r i s e s out of a lack of perception or out of some deep psychological fear of acknowledging a problem. In either case we have to modify the t r a i n i n g given to the patient as well as the a t t i -tudes of the s t a f f . Further i n v e s t i g a t i o n seems to be warranted also by the differences between the past and present socio-emotional Concerns i d e n t i f i e d by male and female patients. Further study i s required to explore communication channels be-tween patients and health professionals. Studies could be made for i n -stance of the effectiveness of the established communication system and 129 of the need to develop a l t e r n a t i v e s , such as information " f l y e r s " or study and discussion groups and feedback from health professionals v i s i t -ing patients at home. Since the e f f i c a c y of the program i s influenced by the discrepan-cies noted i n some cases between what the patient appeared to know about the d i e t and the procedures and what he i n fact p r a ctised, i t i s necessary to i d e n t i f y i t s causes. A possible approach may be to test the i n t e n s i t y of the patient's response to the t r a i n i n g program. 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APPENDIX A PERCENTAGE DISTRIBUTION FOR INFORMATION SEEKING ACTIVITY 142 143 TABLE 30 Patient Use of Miscellaneous Sources for Knowledge Items Other Sources N %* Chronic Kidney Failure Specialist (internist, renal) 13 29.55 Other hospital personnel 3 6.82 Not specified _1 2.27 Sub total 17 Diet Specialist 4 9.09 Other renal unit staff 3 6.82 Other doctor 1 2.27 School teacher 1 2.27 Sample menus _1 2.27 Sub -total 10 Medicines Other renal unit/hospital staff 4 9.09 Laboratory technician 1 2.27 Surgeons __1 2.27 Sub total 6 2.27 Cannulas Care Other renal/hospital unit staff 19 43.18 Surgeon 2 4.55 Specialists _1 2.27 Sub total 22 Dialysis Renal Unit 5 11.36 In hospital 2 4.55 Notes 2 4.55 Other doctors (specialist, interne, nephrologist) _3 6.82 Sub total 12 Medical Problems Other renal unit __1 2.27 Sub total _1 Care of Dialyzer None _-Sub total _2 GRAND TOTAL 68 154.55 * These percentages exceed 100 because patients reported more than one source. TABLE 31 Patient Use of Miscellaneous Sources f or Past Concerns Other Sources N %* Employers Other doctors P s y c h i a t r i s t s Interne Medical d i r e c t o r S p e c i a l i s t 9 20.45 3 6.82 1 2.27 1 2.27 1 2.27 Department of Veterans A f f a i r s , Welfare, Pension Plans 4 9.09 God 3 6.82 Friends 2 4.55 New Treatments 2 4.55 Colleagues 1 2.27 Nobody _1 2.27 TOTAL 28 63.63 * Percentage of a l l 44 patients. 145 TABLE 32 Patient Preference for Miscellaneous Sources for Learning Needs Other Sources N %* Chronic Kidney F a i l u r e Kidney Foundation Chapter Meetings Government Renal unit s t a f f U r o l o g i s t Researcher Sub T o t a l Diet Manufacturers Biochemis t / n u t r i t i o n i s t Food labels Sub To t a l Medicines Manufacturer Small booklet Sub T o t a l Cannulas Care Surgeon Sport manufacturer P o l i t i c i a n Anybody Sub To t a l D i a l y s i s Manufac tur er/manua1 S p e c i a l i s t s — n e p h r o l o g i s t s , l o c a l , foreign Government Renal Service Insurance agent Pharmaceutical Firms Power company Laboratories Sub T o t a l Medical Problems Head nurse P s y c h i a t r i s t Skin S p e c i a l i s t (dermatologist) P u b l i c Health Unit Written hand-outs Not s p e c i f i e d Researcher Sub T o t a l Care of Dialyzer Manufacturer (Drake-Willock) E l e c t r i c i a n Sub To t a l GRAND TOTAL 3 1 1 1 _1 _7 2 1 _1 _4 3 J L _4 2 1 1 _1 _5 3 2 1 1 1 1 _1 10 1 1 1 1 1 1 JL _7 5 _1 _6 43 6. 2, 2. 2. 2, 82 27 27 27 27 4.55 2.27 2.27 6.82 2.27 4.55 2.27 2.27 2.27 6.82 4.55 2.27 2.27 2.27 2.27 2.27 27 27 27 27 27 27 27 11.36 2.27 .97.7.3 * Percentage of a l l 44 patients. 146 TABLE 33 Patient Use of Miscellaneous Sources for Present Concerns Other Sources N % Nobody 3 6.82 P s y c h i a t r i s t 3 6.82 R e h a b i l i t a t i o n Consultant 3 6.82 Friends 1 2.27 Lawyer 1 2.27 Employer 1 2.27 Research Findings 1 2.27 Anybody, h e l p f u l _1 2.27 TOTAL 14 31.81 * Percentage of a l l 44 patients. 147 TABLE 34 S t a f f Estimates of Patient Use of Miscellaneous Sources f o r Knowledge Items Other Sources Chronic Kidney F a i l u r e Attending Physician 4 15.38 Sub T o t a l 4 Diet Medicines Nurses i n other units (in-centre) _2 7.69 Sub T o t a l _2 Cannulas Care Surgeon 3 11.54 Nurse (in-centre) __1 3.85 Sub T o t a l 4 D i a l y s i s Friends 1 3.85 Letters (renal unit) 1 3.85 Resident _1 3.85 Sub T o t a l _3 Medical Problems 0 .00 Care of Dialyzer _0 .00 GRAND TOTAL 13 50.00 * Percentage of 26 s t a f f members. 148 TABLE 35 Staf f Estimates of Patient Use of Miscellaneous Sources f o r Past Concerns Other Sources N %* Friends 10 38.46 Religious Contact 9 34.62 Employer 3 11.54 Community Worker 2 7.69 S o c i a l Agencies - Welfare 2 7.69 P s y c h i a t r i s t _2 7.69 TOTAL 28 107.69** Percentage of 26 s t a f f members. The percentage exceeds 100 because some s t a f f members c i t e d more than one source. 149 TABLE 36 Staff Estimate of Patient Use of Miscellaneous Sources f o r Learning Needs Other Sources N %* Chronic Kidney F a i l u r e Diet Medicines Cannulas Care Surgeon Sub T o t a l D i a l y s i s In-centre r e n a l unit s t a f f Letters to physician Drake-Willock representative Sub To t a l Medical Problems In-centre renal u n i t s t a f f Skin s p e c i a l i s t Sub To t a l Care of Dia l y z e r GRAND TOTAL 0 0 0 2 3 3 1 _1 5 1 J L _2 _0 10 .00 .00 .00 11.54 11.54 3.85 3.85 3.85 3.85 .00 38.46 * Percentage of 26 s t a f f members. 150 TABLE 37 Staf f Estimates of Patient Preference f o r Miscellaneous Sources f o r Present Concerns Other Sources N % * 1. Religious contacts (clergy) 17 65.38 2. P s y c h i a t r i s t 8 30.77 3. Friend 7 26.92 4. S o c i a l agency 4 15.38 5. Employer 3 11.54 6. Anybody with s k i l l 3 11.54 7. General p r a c t i t i o n e r (old s t y l e ) 2 7.69 8. Counsellor 1 3.85 9. Psychologist 1 3.85 10. Don't know _1 3.85 TOTAL 47 180.77** Percentage of 26 s t a f f members These numbers exceed 100 per cent because some of the s t a f f reported more than one information source. APPENDIX B INTERVIEW SCHEDULE • 151 APPENDIX B 1 5 2 INTERVIEW SCHEDULE LEARNING NEEDS OF PERSONS ON HOME HEMODIALYSIS PART A BIO-GRAPHICAL DATA Respondent's Name: Address: Telephone Number: Respondent's Code Number: Record of V i s i t s : Date Time Comments 1st 2nd 3rd _ _ _ _ _ _ 4th Notes : BIOGRAPHICAL DATA PATIENTS DATA FROM HOSPITAL RECORDS 1. Sex of Respondent 1. Male 2. Female A - l 153 Respondent's Number Card Number CODING ONLY 1,2, 3 4 5.1 2 Age (date) (month) Marital Status: 1. Single 2. Married 3. Divorced 4. Widowed 5. Other, specify " (year) (years) 6,7 8.1 2 3 4 5 Length of Home Training Program: (in days) 9,10,11 Method of Previous Treatment: 1. In-centre Hemodialysis 2. In-centre Peritoneal D i a l y s i s 3. Home Peritoneal D i a l y s i s 4. Transplant 5. Other, specify 12 13 14 15 16 6. Duration of Previous Treatment(s): (in days) 1. In centre Hemodialysis 2. In-centre Peritoneal D i a l y s i s 3. Home Peritoneal D i a l y s i s 4. Transplant 5. Other 17,18,19,20 21,22,23,24 25,26,27,28 29,30,31 32,33,34,35 7. Total Number of Types of Treatment: 36 8. Total Number of Months Treated for Disease 37,38,39,40 9. Time Since Completion of Home Di a l y s i s Program: (in days) 41,42,43,44 154 CODING ONLY B. START INTERVIEW HERE. H e l l o , I am Helen N i s k a l a from t h e U n i v e r s i t y o f B r i t i s h Columbia. In my l e t t e r t o you I mentioned t h a t I would l i k e i n f o r m a t i o n about you and your e x p e r i e n c e w i t h y o ur k i d n e y c o n d i t i o n and h e m o d i a l y s i s . I a l s o s a i d t h a t t h e i n f o r m a t i o n t h a t you g i v e me w i l l be c o n f i d e n t i a l and w i l l be used i n s t a t i s t i c a l summaries. P a r t i c i p a n t s w i l l n o t be mentioned by name i n t h e s t u d y . TO BEGIN, I WOULD LIKE TO ASK A FEW QUESTIONS ABOUT YOURSELF. 10. How many c h i l d r e n do you have? 45 11. How many y e a r s o f s c h o o l i n g d i d you compl e t e ? 46,47 12. What i s t h e c o u n t r y o f y o u r b i r t h ? ( i f r e t i r e d , s t a t e r e t i r e d p l u s former o c c u p a t i o n ) t 14. What was y o u r o c c u p a t i o n p r i o r t o your i l l n e s s ? 1. Same 2. O t h e r , s p e c i f y ( i f same, s k i p t o #C. I f o t h e r , answer #17) 15. Was y o u r change i n o c c u p a t i o n due t o y o u r k i d n e y c o n d i t i o n ? 1. Canada 2. Other 48.1 2 13. What i s y o u r o c c u p a t i o n ? 49,50,51 1. No 2. Yes 1 53.2 BIOGRAPHICAL DATA A-2 HEALTH PROFESSIONALS 1 5 5 CODING ONLY Respondent's Number 1,2, 3 Card Number 4 1. P r o f e s s i o n a l S t a t u s : 1. Doctor - r e n a l u n i t 5.1 2. Nurse 2 3. D i e t i t i a n 3 4. S o c i a l Worker 4 5. T e c h n i c i a n 5 6. Doctor - p e r s o n a l 6 7. Other, s p e c i f y ; 7 START INTERVIEW HERE 2. Sex o f Respondent: 1. Male 5.1 2. Female 2 3. What i s the dat e o f your b i r t h ? 6, 7 (date) (month) (year) 4. What i s your m a r i t a l s t a t u s ? 1. S i n g l e 8.1 2. M a r r i e d 2 3. D i v o r c e d 3 4. Widowed 4 5. Othe r , s p e c i f y 5 5. What i s t h e c o u n t r y o f y o u r b i r t h ? 1. Canada 9 .1 2. Other 2 6. How l o n g have you worked w i t h p e r s o n s on home h e m o d i a l y s i s ? 10,11,12, ( i n days) 7. Do you p a r t i c i p a t e i n t h e t e a c h i n g o f per s o n s on home h e m o d i a l y s i s ? , 1. No 14.1 2. Yes 2 8. How many hours a week do you spend i n t e a c h i n g t h e p e r s o n on home h e m o d i a l y s i s ? 15,16 156 CODING ONLY QUESTIONS FOR PHYSICIANS ONLY 9. Are you a gr a d u a t e o f a m e d i c a l s c h o o l i n : 1. B r i t i s h Columbia? 17.1 2. Other p a r t o f Canada? 2 3. Other c o u n t r y ? 3 10. Which s p e c i a l i t y a r e a do you p r a c t i c e ? Mark one 1. G e n e r a l p r a c t i c e 18.1 2. I n t e r n a l M e d i c i n e 2 3. Nephrology 3 4. Sur g e r y 4 5. Othe r , s p e c i f y 5 11. How many y e a r s o f r e s i d e n c y t r a i n i n g d i d you have? ( r e c o r d e d i n days) 19,20,21,22 12. How many y e a r s have you been i n p r a c t i c e ? ( r e c o r d e d i n days) 23,24,25,26 13. Have you any o t h e r e d u c a t i o n a l p r e p a r a t i o n ? S p e c i f y 27.1 2 3 QUESTIONS FOR NURSES ONLY 14. Where d i d you t a k e your b a s i c n u r s i n g c o u r s e ? 1. H o s p i t a l d i p l o m a program 28.1 2. Diploma program sponsored by an e d u c a t i o n a l i n s t i t u t i o n 2 3. Diploma program independent o f a h o s p i t a l b u t n o t sponsored by an e d u c a t i o n a l i n s t i t u t i o n 3 4. B a s i c b a c c a l a u r e a t e degree i n n u r s i n g 4 15. Are you a gr a d u a t e o f a s c h o o l i n : 1. B r i t i s h Columbia? 29.1 2. Other p a r t o f Canada? 2 3. Other c o u n t r y 3 157 CODING ONLY 16. Have you t a k e n any h o s p i t a l p o s t - g r a d u a t e c o u r s e s i n n u r s i n g ? 1. No 30.1 2. Yes 2 ( i f No, s k i p t o #19. I f Yes, answer #18) 17. Which c o u r s e s have you t a k e n ? S p e c i f y c o u r s e s o v e r t h r e e months. 1. I n t e n s i v e or Coronary Care N u r s i n g 31.1 2. N e u r o l o g i c a l / n e u r o s u r g i c a l N u r s i n g 2 3. O b s t e t r i c N u r s i n g 3 4. O p e r a t i n g Room N u r s i n g 4 5. P e d i a t r i c N u r s i n g 5 6. P s y c h i a t r i c N u r s i n g 6 7. O t h e r , s p e c i f y 7 18. What o t h e r p r e p a r a t i o n i n n u r s i n g do you have? 1. C r e d i t s b u t no d i p l o m a o r c e r t i f i c a t e 32.1 2. Diploma o r c e r t i f i c a t e 2 3. P o s t b a s i c degree 3 4. M a s t e r ' s degree 4 5. None 5 19. I f number 18 answered, what c o u r s e o r c o u r s e s d i d you t a k e ? 1. P u b l i c h e a l t h n u r s i n g 33.1 2. T e a c h i n g 2 3. Teaching and s u p e r v i s i o n 3 4. Ward a d m i n i s t r a t i o n 4 5. C o u r s e ( s ) i n c l i n i c a l c o n t e n t 5 6. O t h e r , s p e c i f y " 6 20. How many y e a r s have you been i n p r a c t i c e ? ( r e c o r d e d i n days) 34,35,36,37 21. Have you any o t h e r e d u c a t i o n a l p r e p a r a t i o n ? S p e c i f y 38.1 2 3 158 CODING ONLY QUESTIONS FOR DIETITIANS ONLY 22. Where d i d y o u t a k e y o u r b a s i c d i e t e t i c c o u r s e ? 1. B r i t i s h C o l u m b i a 39.1 2. O t h e r p a r t o f Canada 2 3. O t h e r c o u n t r y 3 23. I n w h i c h s p e c i a l i t y a r e a do y o u p r a c t i c e ? 1. Food P r o d u c t i o n 40.1 2. T h e r a p e u t i c s 2 24. How many y e a r s o f r e s i d e n c y t r a i n i n g d i d y o u have? ( r e c o r d e d i n d a y s ) 41,42,43.44 25. How many y e a r s have y o u been i n p r a c t i c e ? ( r e c o r d e d i n d a y s ) 45,46,47,4c 26. Have y o u any o t h e r e d u c a t i o n a l p r e p a r a t i o n ? S p e c i f y 49.1 2 3 QUESTIONS FOR SOCIAL WORKERS ONLY 27. Where d i d y o u t a k e y o u r b a s i c s o c i a l work p r e p a r a t i o n ? 1. B r i t i s h C o l u m b i a 50.1 2. O t h e r p a r t o f Canada 2 3. O t h e r c o u n t r y 3 28. From what k i n d o f p r o g r a m d i d y o u g r a d u a t e ? 1. U n d e r g r a d u a t e i n s o c i a l work 51.1 2. P o s t - g r a d u a t e i n s o c i a l work 2 29. I n w h i c h s p e c i a l i t y a r e a do y o u p r a c t i c e ? 1. Case work 52.1 2. Group work * 2 3. Community o r g a n i z a t i o n 3 30. How many y e a r s have you been i n p r a c t i c e ? 159 CODING ONLY (r e c o r d e d i n days) 53,54,55,56 31. Have you any o t h e r e d u c a t i o n a l p r e p a r a t i o n ? S p e c i f y 57.1 2 3 QUESTIONS FOR RENAL TECHNICIANS ONLY 32. Where d i d you t a k e your r e n a l t e c h n i c i a n t r a i n i n g ? 1. On-the-job t r a i n i n g i n a h o s p i t a l 58.1 2. Other i n s t i t u t i o n , s p e c i f y 2 33. Have you t a k e n any f u r t h e r n e p h r o l o g y c o u r s e s ? 1. No 59.1 2. Yes 2 ( i f No, s k i p t o #36. I f Yes, answer #3,W) 34. I f Yes t o number 33, s p e c i f y c o u r s e ( s ) t a k e n . (Over one month) 60.1 2 3 35. How many y e a r s have you been i n p r a c t i c e as a r e n a l t e c h n i c i a n ? ( r e c o r d e d i n days) 61,62,63,64 36. Have you t a k e n any o t h e r e d u c a t i o n a l p r e p a r a t i o n ? S p e c i f y 65.1 2 3 PARTS B TO G I n s t r u c t i o n s t o t h e p a t i e n t s Now, I would l i k e t o know about how you have l e a r n e d t o c a r e f o r y o u r s e l f . I would l i k e t o ask a s e r i e s o f q u e s t i o n s d e a l i n g w i t h c h r o n i c k i d n e y f a i l u r e . I n r e l a t i o n t o each I w i l l ask where you g o t t h i s i n f o r m a t i o n and i f t h e r e i s a n y t h i n g e l s e t h a t you want t o know about t h a t t o p i c . I would a l s o l i k e t o know from whom you would l i k e t o g e t t h i s a d d i t i o n a l i n f o r m a t i o n . I w i l l b e g i n w i t h t h e q u e s t i o n s d e a l i n g w i t h c h r o n i c k i d n e y f a i l u r e and d i a l y s i s and where you g o t t h e i n f o r m a t i o n about t h o s e i t e m s . I n s t r u c t i o n s t o t h e h e a l t h p r o f e s s i o n a l s I would l i k e t o ask a s e r i e s o f q u e s t i o n s d e a l i n g w i t h what you t h i n k t h e p e r s o n on H.H. d i a l y s i s knows about c h r o n i c k i d n e y f a i l u r e and d i a l y s i s . I n r e l a t i o n t o each I w i l l ask where you t h i n k t h a t t h e d i a l y s i s p a t i e n t w i l l say t h a t he g o t h i s i n f o r m a t i o n . I w i l l a l s o ask i f you t h i n k t h a t t h e p a t i e n t w i l l want t o know a n y t h i n g e l s e about t h a t t o p i c and from whom you t h i n k t h a t t h e p a t i e n t would l i k e t o g e t t h i s a d d i t i o n a l i n f o r m a t i o n . Note: f o r a l l KNOWLEDGE ite m s a s k : 1. Who f i r s t t o l d you about ? 2. Who e l s e t o l d you about t h a t ? Probe t o de t e r m i n e a l l s o u r c e s used. INFORMATION-SOURCES Books Manuals/pamphlets Media D i e t i t i a n R e nal U n i t D octor P e r s o n a l P h y s i c i a n R e g i s t e r e d Nurse S o c i a l Worker T e c h n i c i a n Other p a t i e n t s R e l a t i v e s Own e x p e r i e n c e "Other" - S p e c i f y . PART B PART E - l KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D TO BEGIN, I WOULD LIKE YOU TO TELL ME ABOUT KIDNEY TROUBLE. 1. Please t e l l me why some people with CKF have high blood pressure 1. Salt retention 2. Water retention 1. • 2. How would you be able to t e l l i f there i s too much s a l t in the body? 1. B.P. too high 2. Weight gain 3. Edema (ankles, eyes) 2. 3. Te l l me what causes the s a l t concentration in blood to r i se? 1. j^alt intake high 2. I f l u i d loss - sweating 3. 4. Why should you not gain more than a k i l o to a k i l o and a half between dialyses? 4. 5. Tel l me what uremia is? 1. Term for co l l ec t i on symptoms when kidneys no longer work. 5. 6. Tel l me what some of the symptoms of uremia are? 1. Headache. 2. Drowsiness 3. Diarrhoea 4. Itching 5. High B.P. 6. Ti red 7. Weakness 8. Nausea, vomiting 6. 7. TOTAL NUMBER KNOWN 7. TO rA L S )UF :CE S US ED CODING ONLY 163 KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D NOW, I WOULD LIKE YOU TO TELL ME ABOUT THE RENAL DIET. 1. Te l l me why foods for some people on d i a l y s i s should be cooked without adding sa l t ? 1. High s a l t , water retained ; 2. B.P. r i ses 1. 2. Why should you not use a s a l t subst itute unless the doctor has given you permission? 1. Contains K. 2. Monosodium glutamate 2. 3 . How do you f igure out what to eat in your d ie t in the way of: PROTEIN 1. Keep c in equivalents set 2. Use body bui lding PROTEIN -meats, eggs, mi lk, f i s h , fowl 3. Know PROTEIN in other foods, bread, ce rea l , potato, legumes 4. PROTEIN saves kidneys work 5. PROTEIN Twastes, symptoms 3. 4. How do you f igure out what to eat in your d ie t in the way of: MINERALS 1. Know amounts of Na, K, Ca in food, f l u i d e.g. fresh f r u i t , spices, condiments, sherry -high in K. Soups high in Na. 2. Use foods low in re s t r i c ted sa l t s 4. 5. How do you f igure out what to eat in your d iet in the way of: FLUID/WATER 1. Take amount and type set 2. Portion out for 24 hour tota l 3. Consider f l u i d in foods 5. CODING ONLY 164 KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 6. Why i s i t necessary to include adequate ca lor ies in your diet? 1. Maintain body weight 2. Prevent tissue breakdown b. 7. Tel l me some of the items you may eat as much as you l i ke ? 1. Salad o i l 2. Unsalted vegetable fa t 3. Hard Candy 4. Mints 5. J e l l y beans 7. 8. TOTAL NUMBER KNOWN 8. T OT AL < ou R CE S U SE D NEXT, I WOULD LIKE TO ASK YOU ABOUT MEDICINES TAKEN BY PEOPLE ON HEMODIALYSIS 1. Why i s HEPARIN used during the d i a l y s i s procedure? 1. Prevent c l o t t i n g blood 1ines and membranes 1. 2. What precautions should you observe when given HEPARIN? 1. Doseage accurate 2. Check bleeding from cuts,gums 3. Check bruises 2. 3. Why DO you get IMPERON? 1. Treat iron deficiency anemia due to 2. Compensation for ^ erythropoietin production 3. Blood l e f t in d ia lyzer 3. 4. TOTAL NUMBER KNOWN 4. T DT ^ L S ou R CE S U SE D THE NEXT SECTION DEALS WITH CANNULA CARE 1. Tel l me what i s the biggest problem with your cannulas that you have to avoid? 1. CODING ONLY 165 KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 2. What do you do to prevent your cannulas from coming out? AVOID a. Arm 1. Rapid motion-pronation . 2 . Rapid motion-supination 3. Forceful wr i s t f lex ion 4. Forceful wr i s t extension b. Leg 1. Excessive walking 2. Excessive running 3. Jumping 4. S i t t i ng c legs crossed on cannulas Constant repet i t i ve movements -i ron ing, painting Strenuous movements - work, sport 2. 5 3. What do you do to prevent your cannulas from c lo t t ing ? 1. Avoid unnecessary kinks 2. Avoid excessive use of cannulas limb 3. Prevent in fect ion around cannulas s i tes 4. Al ign cannulas and shunt to s t ra in 5. Avoid obstruction to blood flow in shunt 6. Avoid const r i c t ion of blood vessels in area of cannulas 3. 4. Tel l me how to detect a c lot ted shunt? 1. Shunt cold to touch sometimes 2. Purplish colored blood 3. Separation of blood 4. Blood flow slows.or stops 5. No " t h r i l l " over vein in which shunt placed 6. F ibr in 7. No pulse in cannulas, can ' t hear swish in cannulas c stethoscope 4. > C O D I N G O N L Y 166' K N O W L E D G E A C T U A L I N F O R M A T I O N - S O U R C E 1 2 3 4 5 6 7 8 9 A B C D 5. What do you do for a c lot ted shunt? 1. De-clot a r t e r i a l cannula f i r s t then venous one 2. Venous cannula i r r i ga ted c N/S i f necessary 5. 6. What signs indicate a cannula infect ion? 1. Pain 2. Swelling 3. Redness 4. Drainage 5. ^ blood flow 6. 7. What do you do to protect your cannulated^limb? 1. Cover c s t e r i l e dressing, k l ing bandage 2. Clean pre & post d i a l y s i s 3. P la s t i c cover-bath, shower swim 4. Avoid temperature extremes 5. Avoid t i ght c lothing 6. Avoid posit ions extreme bending, f lex ing of limb 7. Standing long time in one spot - leg cannula 7. 8. What would you do i f the s i l a s t i c connector ("U" tube) suddenly separated from the Teflon connector? 1. Clamp s i l a s t i c connector and tube 2. Re-join shunt 8. 9. . TOTAL NUMBER KNOWN 9. TO T A S( IUR CE! i L SE 1 CODING ONLY 167.; KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D NOW, I WOULD LIKE TO ASK ABOUT DIALYSIS 1. Tel l me what i s the function of the a r t i f i c i a l kidney? 1. Remove body wastes through d i a l y s i s 2. Regulate body chem. 3. Regulate body water 1. 2. What tests must be made to be sure that the Drake-Willock and K i i l d ia lyzer are ready for a "run"? 1. Chloride test 2. C l i n i t e s t 3. Why do you use a sample dialysate from the inflow dia lysate hose for the chlor ide test? 1. Kidney may a l t e r d ia lysate CI. content 3. 4. What does the chlor ide test do? 1. Measures accuracy of conductivity meter 2. Compares a known quantity of d ia lysate against an equal volume of standard s a l t so lut ion. 3. Tel l s you i f H20 and cone, mixing properly and of r i ght comp 4. 5. What-would you do i f the chlor ide test of d ia lysate i s 96 or 106? 1. Repeat chlor ide determination 2. If results agree c f i r s t test or nearer to that prescribed adjust conductiv ity meter to CI. determination 3. Proceed c d i a l y s i s 4. If in doubt consult M.D. 5. CODING ONLY '168'-KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 6 . What does the sounding of the conductiv ity meter mean? 1. Dialysate concentration not accurate - e.g. leak in water l i n e . 2. Temperature changes -overheating of d ia lysate 3. Technical problems -malfunctioning C. meter 6. r . What does the sounding of the HIGH venous pressure alarm mean? 1. Venous l i n e blocked - c l o t , Jynk, spasm 2. I person's B.P. 7. 5. What does the sounding of the LOW venous pressure alarm mean? 1;, Blood tubing separation 2. A r te r i a l l i ne block - c l o t , spasm, kink 3. I person's B.P. 8. 9. What monitoring (measurements) should persons on d i a l y s i s do of themselves? 1. Temperature 2. Pulse 3. B.P. 4. Weight 9. 10. Why i s the a i r r inse pump used to return blood from the d ia lyzer to the person? 1. Pump creates steady flow, gravity may not be enough 10. 11. What would you do i f during d i a l y s i s your blood pressure dropped? 1. Negative pressure o f f 2. Remain ly ing down 3. If ordered run sal ine into d i a l y ze r , venous dr ip chamber 11. CODING ONLY 169' KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 12. What causes a drop in blood pressure during d ia l y s i s ? 1. I f l u i d loss 2. Blood loss-membrane leak, l i n e separation 3. Eating 12. 13. Tel l me what would you do for a drop in blood pressure a few hours a f ter d ia l y s i s ? 1. Drink salted broth. 13. 14. What would you do i f you missed d i a l y s i s ? 1. protein foods 2. JL minerals - Na. 3. Control f l u i d intake 4. ^ K. 14. 15. How do you know i f a membrane has ruptured? 1. Dialysate pink and frothy 2. Monitor rings 15. 16. What would you do i f a membrane ruptured during d ia l y s i s ? 1. Clamp a r t e r i a l l i n e 2. Stop d i a l y s i s 3. Return blood i f sure dia lysate hasn 't entered blood compartment 16. 17. TOTAL NUMBER KNOWN 17. TO TA - SO UR CE S UJ ED CODING ONLY 170, KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D NEXT, I WOULD LIKE TO ASK ABOUT PROBLEMS EXPERIENCED BY SOME PEOPLE ON HEMODIALYSIS. 1. Tel l me what can be done for the numbness and t ing l i ng in the soles of the feet? 1. Adequate d ia l y s i s - longer hours 2. Vitamin B in d ie t 3. Mult iv i tes as ordered 1. 2. What can be done for the i tchy skin of the person with CKF? 1. Control PROTEIN in d ie t 2. Use drying agents sparingly or not at a l l (alcohol, soap) 3. Dry skin well 4. Lotions as prescribed (?) 5. Dialyze well 6. Meds. - benadryl 2. 3. What would you do for a venospasm? 1. Heat to area 2. Brandy 1 oz. or other such beverage 3. 4. What would you do i f fever and/or c h i l l s occured during d ia l y s i s ? 1. Blanket - warmth 2. Temperature check 3. If severe:-i . stop d i a l y s i s i i . re-transfuse blood i i i . d ia lyze next day i v . c a l l doctor 4. Try to determine cause 5. Report to physician 4. KNOWLEDGE ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 5. What happens i f a person has defective calcium absorption? 1. Bone problems, fractures 5. 6. TOTAL NUMBER KNOWN 6. TO T AL 30 L RC :s U SEI l NOW, I WOULD LIKE TO ASK ABOUT CARE OF THE DIALYZER. 1. Tel l me the minimum time formaldehyde can be l e f t in the d ia lyzer when storing for re-use? 1. Two hours 1. 2. Why i s th i s done? 1. S t e r i l i z e d ia lyzer parts 2. 3. How many times do you use the d ia lyzer before changing the cellophane? 1. Three 3. 4. TOTAL NUMBER KNOWN 4. Ti )T AL S( UR :E< U SEI 1 I n s t r u c t i o n s t o p a t i e n t s Now I would l i k e t o ask i f t h e r e i s a n y t h i n g e l s e t h a t you want t o know about c h r o n i c k i d n e y f a i l u r e and d i a l y s i s and from whom you would l i k e t o g e t t h i s a d d i t i o n a l i n f o r m a t i o n . I n s t r u c t i o n s t o h e a l t h p r o f e s s i o n a l s The n e x t s e r i e s o f q u e s t i o n s d e a l s w i t h a d d i t i o n a l i n f o r m a t i o n t h a t you t h i n k t h a t the p a t i e n t would l i k e t o know about c h r o n i c k i d n e y f a i l u r e and d i a l y s i s and from whom you t h i n k t h a t t h e p a t i e n t would l i k e t o g e t t h i s i n f o r m a t i o n . Note: f o r a l l LEARNING it e m s a s k : 1. Who would you l i k e t o t e l l you about ? Probe t o dete r m i n e a l l p o t e n t i a l s o u r c e s . L i s t i n o r d e r o f i m p o r t a n c e . f o r t h e h e a l t h p r o f e s s i o n a l s ask: 1. Who do you t h i n k t h a t the p a t i e n t w i l l r e p o r t as f i r s t h a v i n g t o l d him about___ ? CODING ONLY PART C PART E-2 173 LEARNING NEEDS PREFERRED INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B c D 1. Tel l me some of the other things that you want to know about high blood pressure and CKF? 1. 2. Tel l me some of the other things that you want to know about s a l t retention? 2. 3. Tel l me some of the other things that you want to know about too much s a l t in the blood? 3. 4. Tel l me some of the other things that you want to know about body weight and d ia l y s i s ? 4. 5. Tel l me some of the other things that you want to know about uremia? 5. 6. Please t e l l me some of the other things that you want to know about the symptoms of uremia? 6. 7. What other things do you want to know about CKF? 7. 8. TOTAL NUMBER OF ITEMS 8. TC TA PI 1EF :RI 1EC ;oi RC :s CODING ONLY 174 LEARNING NEEDS PREFERRED INFORMATION-SOURCE DIET 1 2 3 4 5 6 7 8 9 A B C D .1. Please t e l l me some of the other things that you want to know about s a l t and the renal d iet? 1. 2. Please t e l l me some of the other things that you want to know about s a l t substitutes and the renal diet? 2. 3. Please t e l l me some of the other things that you want to know about f igur ing out about proteins in your diet? 3. 4. Please t e l l me some of the other things that you want to know about minerals (e lectro lytes) and the renal diet? 4. 5. Please t e l l me some of the other things that you want to know about f l u i d s and water and the renal d iet? 5. 6. Please t e l l me some of the other things that you want to know about calor ies and the renal d iet? 6. 7. Please t e l l me some of the other things that you want to know about " f ree " foods and the renal d iet? 7. 1 8. Please t e l l me some of the other things that you want to know about the renal diet? 8. 9. TOTAL NUMBER OF ITEMS 9. TO TA . 1 'RE FEI (RE D : 501 RC :s CULs'iiNjU* • ONLY 1 75 LEARNING NEEDS PREFERRED INFORMATION-SOURCE MEDICATIONS 1 2 3 4 5 6 7 8 9 A B C D 1 . Tel l me some of the other things that you want to know about HEPARIN? 1. 2 . Tel l me some of the other things that you want to know about safety precautions related to using HEPARIN? 2. 3 . Tel l me some of the other things that you want to know about IMFERON? 3. 4. Tel l me some of the other things ; that you want to know about medications taken by the person on hemodialysis? 4. 5. TOTAL NUMBER OF ITEMS 5. TC TA >RE FE D 501 JRC ES CANNULAS CARE 1. Please t e l l me some of the other things that, you want to know about problems with cannulas? 1. 2. Please t e l l me some of the other things that you want to know about things to do to prevent your cannulas from coming out? 2. 3. Please t e l l me some of the other things that you want to know about c l o t t i n g of cannulas? 3. i LEARNING NEEDS PREFERRED INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 4. Please t e l l me some of the other things that you want to know about recognizing c lotted shunts? 4. 5. Please t e l l me some of the other : things that you want to know about de-clott ing? 5. 6. Please t e l l me some of the other things that you want to know about cannula infect ion? 6. 7. Please t e l l me some of the other things that you want to know about protecting the cannulated limb? 7. 8. Please t e l l me some of the other things that you want to know about cannulas emergencies? 8. 9. Please t e l l me some of the other things that you want to know about care of the cannulas? 9. 10. TOTAL NUMBER OF ITEMS 10. T ro ,L PR :FE RR ID SO •RC ES DIALYSIS 1. What are some of the other things that you want to know about the a r t i f i c i a l kidney? 1. 2. What are some of the other things that you want to know about test ing whether the Drake-Willock and K i i l d ia lyzer are ready for a "run"? 2. CODING ONLY -177' LEARNING NEEDS PREFERRED INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 3. What are some of the other things that you want to know about sample co l l e c t i on for the chlor ide test? 3. 4. What are some of the other things that you want to know about the purpose of the chlor ide test? 4. 5. What are some of the other things that you want to know about the interpretat ion of the chlor ide test? 5. 6. What are some of the other things that you want to know about the conductivity meter? 6. 7. What are some of the other things that you want to know about the Venous Pressure HIGH alarm? 7. 8. What are some of the other things that you want to know about the Venous Pressure LOW alarm? 8. 9. What are some of the other things that you want to know about monitoring yourself? 9. 10. What are some of the other things that you want to know about the " take-of f " procedure in d i a l y s i s ? 10, CODING ONLY -178 LEARNING NEEDS PREFERRED INFORMATION-SOURCE : 1 2 3 4 5 6 7 8 9 A B c D 11. What are some of the other things that you want to know about blood pressure changes during d ia l y s i s ? 11. 12. What are some of the other things that you want to know about the causes of blood pressure changes during d ia l y s i s ? 12. 13. What are some of the other things that you want to know about blood pressure changes a f te r d i a l y s i s ? 13. 14. What are some of the other things that you want to know about missed d ia l y s i s ? 14. 15. What are some of the other things that you want to know about the cause of ruptured membranes? 15. 16. What are some of the other things that you want to know about i f a membrane ruptures? 16. 17. What are some of the other things that you want to know concerning complications related to d i a l y s i s ? 17. 18. What other things do you want to know about d ia l y s i s ? 18. 19. TOTAL NUMBER OF ITEMS 19. T( :T/ 1 >R :FE D 30 IRC ,:s CODING ONLY 179 LEARNING NEEDS PREFERRED INFORMATION-SOURCE MEDICAL PROBLEMS 1 2 3 4 5 6 7 8 9 A B C D 1. What other things do you want to know about numbness and t i ng l i ng in the soles of the feet? 1. 2. What other things do you want to know about itchy skin? 2. 3. What other things do you want to know about venospasm? 3. 4. What other things do you want to know about fever and/or c h i l l s during d ia l y s i s ? 4. 5. What other things do you want to know about defective calcium absorption? 5. 6. What other things do you want to know about problems related to d ia l y s i s ? 6. 7. TOTAL NUMBER OF ITEMS 7. TC T/> L 3R :FE RR ;D so JRC ES • , ' ONLY 180 LEARNING NEEDS PREFERRED INFORMATION-SOURCES CARE OF THE DIALYZER 1 2 3 A 5 6 7 8 9 A B C D . What other things do you want to know about storing the dia lyzer? 1. 2 . What other things do you want to know about s t e r i l i z a t i o n of the dialyzer? 2. 3. What other things do you want to know about cellophane useage? 3. 4. What other things do you want to know about the care of the DRAKE-WILLOCK? .4. 5. TOTAL NUMBER OF ITEMS 5. T DT \L PR EFI :RR ED SC URI :ES ! PART D-l < PART E -3 ° N L Y 181 SOCIO-EMOTIONAL CONCERNS:PAST ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D I. FINALLY, I WOULD LIKE YOU TO TELL ME ABOUT SOME OF THE CONCERNS THAT A PERSON ON HOME HEMODIALYSIS MAY HAVE. (Hand respondent 3x5 cards with "concerns" reported by persons on home hemodialysis) : 1. Please se lect items that re late to problems you have already faced and dealt with. Arrange these in order of importance.. Please give me the numbers. 1. Financial problems 2. Change in l i f e goals or plans 3. Physical symptoms of i l l n e s s 4. Physical symptoms from treatment 5. Dying 6. Mental state such as confusion 7. Change i n social re lat ions with family 8. I nab i l i t y to carry out ro le as breadwinner/ housewife 9. Acceptance of chronic i l l ne s s 10. Dependency on treatment 11. Diet regimen 12. Change in residence 13. Change in jobs 14. Inabil ity, to work 15. Problems with cannulas care 16. Feelings about the unknown 17. Change in body image 18. Reduction in income 19. Depression 20. Change in socia l re lat ions with f r iends, co-workers 21. Reduction in social a c t i v i t y 1. Wh th 0 es t ilc "c y on )U :e» ho ns v 1 " ? 0 iec 1 vi t h SOCIO-EMOTIONAL CONCERNS:PAST ACTUAL INFORMATION-SOURCE 1 2 3 4 5 6 7 8 9 A B C D 22. I nab i l i t y to carry out ro le as marriage partner 2 . TOTAL NUMBER OF "CONCERNS" 2. T )T/ iL S )UF CE 3 US ED 3. What were some of the other problems about which you were concerned? L i s t in order of importance. 3. 4. TOTAL NUMBER OTHER PROBLEMS 4. T )T/ \l S )UF CE 5 US ED ! i CODING PART . D-2 v PART E -2 ONLY 1 8 3 SOCIO-EMOTIONAL CONCERNS: PREFERRED INFORMATION-SOURCE PRESENT 1 2 3 4 5 6 7 8 9 A B C D 1. From the remaining cards, please se lect those items that concern you now. Arrange these in order of importance and give me the numbers. 1. Financial problems 2. Change in l i f e goals or plans 3. Physical symptoms of i l l ne s s 4. Physical symptoms from treatment 5. Dying . .6. Mental state such as confusion 7. Change in social re lat ions with family 8. I nab i l i t y to carry out role as breadwinner/ housewife 9. Acceptance of chronic i l l ne s s . 10. Dependency on treatment 11. Diet regimen 12. Change in residence 13. Change in jobs 14. I nab i l i t y to work 15. Problems with cannulas care 16. Feelings about the unknown 17. Change in body image 18. Reduction in income 19. Depression 20. Change in social re lat ions with f r iends, co-workers 21. Reduction in social a c t i v i t y 22. I nab i l i t y to carry out role as marriage partner 1. wi yc pr 0 U ob no 1 0 le lie is ' y 0 )U iec l i 1 ce to :h te the 11 se 1 i 2. TOTAL NUMBER OF ITEMS 2. T )T, 1 p *EI ER *EI SOI RC SOCIO-EMOTIONAL CONCERNS: PREFERRED INFORMATION-SOURCE PRESENT 1 2 3 4 5 6 7 8 9 A B C D .3. What other things would you l i k e to know about "concerns"/ problems experienced by the person on home hemodialysis? 3. 4. TOTAL NUMBER OF OTHER "CONCERNS' .4. T( IT/ L P IEF ER (ED 301 RC :s ! CODING PART F--I ^ PART E ° * L Y T O R FOR PATIENTS LONLY - ACTUAL INFORMATION-SOURCE DIALYZER PREPARATION SKILL 1 2 3 4 5 6 7 8 9 A B C D NOW, I WOULD LIKE YOU TO SHOW ME WHAT YOU WOULD DO TO PREPARE FOR DIALYSIS. THE DRAKE-WILLOCK AND KIIL DIALYZER HAVE ALREADY BEEN • PREPARED FOR USE. IPerformance Check L i s t : 1. Disconnect rubber tubing on dialysate ports, re-connect d ia lysate tubing 2. Turn water on 3. Turn power on 4. Draw heparin up 5. Add 3cc. heparin to N/Saline 6. Attach "Venopak" 7. Displace a i r in "Venopak" 8. Attach blood tubing 9. Run sal ine into blood tubing 10. C l i n i t e s t 11. Attach concentrate l i ne 12. Set l im i t s on monitors 13. Chloride test 1. > 2. If you are in a hurry, what steps do you leave out? L i s t below 2. HOOK-UP SKILL NEXT, I WOULD LIKE YOU TO SHOW ME HOW YOU WOULD PUT YOURSELF ON DIALYSIS. 3.Performance C h e c k l i s t : 1. Remove dressing from shunt 2. Clean shunt and arm ( s t e r i l e techniques) 3. Lay cannulas and shunt on s t e r i l e dressing 3. ! COPING ONLY 186 FOR PATIENTS ONLY ACTUAL INFORMATION-SOURCE HOOK-UP SKILL 1 2 3 4 5 6 7 8 9 A B C D 4. Clamp shunt 5. Remove tapes, Teflon connector then remove connector 6. Blood specimen i f necessary 7. Connect a r t e r i a l cannula to d ia lyzer a r t e r i a l tubing •8. Tape connection 9. Let d ia lyzer and venous tubing f i l l with blood 10. Put heparin in as blood enters d ia lyzer 11. Clamp a r t e r i a l and venous l ines of d ia lyzer 12.. Connect venous Tine to venous cannula 13. Tape connection 14. Check i f tubing free of a i r 15. Remove forceps venous tubing, clamp venous cannula 16. Release a r t e r i a l forceps and clamp 17. Tape cannulas and blood l ines 18. Dressing and k l ing bandage over cannula s i t e 19. Monitoring l i ne into a r t e r i a l dr ip chamber, set l im i t s 20. Set negative pressure 4. If you are in,a hurry, what steps do you leave out? L i s t below 4. l 5. TOTAL NUMBER OF ITEMS 5. TC TA IC1 UA OU (CI s PART F-2 PART E LEARNING NEEDS PREFERRED INFORMATION-SOURCE DIALYZER PREPARATION SKILL 1 2 3 4 5 6 7 8 9 A B C D 1. Please t e l l me what other things you want to know about preparing the Drake-Wi11ock and K i i l d ia lyzer for d i a l y s i s ? 1. 2. What do you want to know about leaving out steps in th i s procedure? 2. 3. What other things do you want to know about putting yourself on d ia ly s i s ? . 3. 4. What other things do you want to know about leaving out steps in th i s procedure? 4. 5. TOTAL NUMBER OF ITEMS 5. T( T/ L PRI :FE RR :D SO JRC ES CODING ONLY PART F 188 For H e a l t h P r o f e s s i o n a l s Only 1. Rate how you t h i n k t h a t t h e p e r s o n on home h e m o d i a l y s i s (or t h e i r spouse) i s a b l e t o p r e p a r e the D r a k e - W i l l o c k and K i i l d i a l y z e r f o r d i a l y s i s . (Hand c a r d t o respondent) 1. E x t r e m e l y w e l l 2. Very w e l l 3. F a i r l y w e l l 4. Don 11 know 5. Poorr 6. Very poor-7 . E x t r e m e l y poor- -y 2. Rate how you t h i n k t h a t a p e r s o n on home h e m o d i a l y s i s (or t h e i r spouse) would be a b l e t o p u t h i m s e l f on d i a l y s i s , t h a t i s , p e r f o r m th e hook-up p r o c e d u r e . (Hand c a r d w i t h r a t i n g s t o respondent) CODING ONLY PART G 1 8 9 Open-Ended Q u e s t i o n 1. What o t h e r i s s u e s do you t h i n k t h a t a p e r s o n on home h e m o d i a l y s i s wants t o know about c h r o n i c k i d n e y f a i l u r e and d i a l y s i s ? 2. What e x p e r i e n c e s e n c o u n t e r e d by t h e p e r s o n g o i n g on h e m o d i a l y s i s do you t h i n k t h a t o t h e r p e o p l e g o i n g on d i a l y s i s might want t o know more about? APPENDIX C ROTTER'S INTERNAL-EXTERNAL SCALE 190 1 9 1 : APPENDIX " $ ROTTER'S INTERNAL-EXTERNAL SCALE PERSONAL OPINION SURVEY ' NAME This i s a survey to f i n d out the way i n which certain important events i n our society a f f e c t d i f f e r e n t people. Each item consists of a p a i r of alternatives lettered a or b. Please select the one statement of each pa i r which you more strongly believe to the case as far as you are concerned. Be sure to select the one you actually believe to be more true rather than the one you think you should choose or the one you would l i k e to be true. Since this i s a measure of personal b e l i e f , obviously there are no right or wrong answers. To indicate your choice, simply place a check mark in the blank space preceding the item you choose. In some instances you may discover that you believe both statements or neither one. In such cases, be sure to select the one you more strongly believe to be i n the case. Do not spend too much time on any one item, but be certain to f i n d an answer for every choice. 1. a. Children get into trouble because t h e i r parents punish them too much. b. The trouble with most children nowadays i s that t h e i r parents are too easy with them. 2. a. Many of the unhappy things i n people's l i v e s are p a r t l y due to bad luck. b. People's misfortunes r e s u l t from the mistakes they make. 3. _ a. One of the major reasons why we have wars i s because people don't take enough in t e r e s t i n p o l i t i c s . b. There w i l l always be wars, no matter how hard people try to prevent them. 4. a. In the long run people get the respect they deserve i n this world. b. Unfortunately, an individual's worth often passes unrecognized no matter how hard he t r i e s . 5. a. The idea that teachers are unfair to students i s nonsense. b. Most students don't r e a l i z e the extent to which t h e i r grades are influenced by accidental happenings. 6. a. Without the right breaks one cannot be an e f f e c t i v e leader. b. Capable people who f a i l to become leaders have not taken advantage of t h e i r opportunities. No matter how hard you t r y some people j u s t don't l i k e you. £ People who can't get others to l i k e them don't understand how to get along with others. Heredity plays the major r o l e i n determining one's personality. I t i s one's experiences i n l i f e which determine what they're l i k e . I have often found that what i s going to happen w i l l happen. Trusting to fate has never turned out as well for me as making a decision to take a d e f i n i t e course of a ction. In the case of the well prepared * student there i s ' r a r e l y i f ever such a thing as an un f a i r t e s t . Many times exam questions tend to be so unrelated to course work—that studying i s r e a l l y useless. Becoming a success i s a matter of hard work, luck has l i t t l e or nothing to do with i t . Getting a good job depends mainly on being i n . the r i g h t place at the r i g h t time. The average c i t i z e n can haye an influence i n government decisions. This world i s run by the few people i n power, and there i s not much the l i t t l e guy can do about i t . When I make plans, I am almost c e r t a i n that I can make them work. I t i s not always wise to plan too f a r ahead because many things turn out to be a matter of good or bad fortune anyhow. There are certa i n people who are just no good. There i s some good i n everybody. In my case getting what I want has l i t t l e or nothin* to do with luck. Many times we might just as well decide what to do by f l i p p i n g a coin. Who gets to be the boss often depends on who was lucky enough to be i n the r i g h t place f i r s t . Getting people to do the r i g h t thing depends upon a b i l i t y , luck has l i t t l e or nothing to do with i t . 193 17. a. As far as world a f f a i r s are concerned, most of us are the victims of forces we can neither understand/**-' nor control. b. By taking an active part i n p o l i t i c a l and s o c i a l a f f a i r s the people can control world events. 18. a. Most people don't r e a l i z e the extent to which t h e i r l i v e s are controlled by accidental happenings. b. There r e a l l y i s no such thing as "luck." 19. a. One should always be w i l l i n g to admit mistakes. b. I t i s usually best to cover up one's mistakes. 20. a. I t i s hard to know whether or not a person r e a l l y l i k e s you. b. How many friends you have depends upon how nice a person you are. 21. a. In the long run the bad things that happen to us are balanced by the good ones. b. Most misfortunes are the r e s u l t of lack of a b i l i t y , ignorance, laziness, or a l l three. 22. a. With enough e f f o r t we can wipe out p o l i t i c a l corruption, b. I t i s d i f f i c u l t for people to have much control over the things p o l i t i c i a n s do i n o f f i c e . 23. a. Sometimes I can't understand how teachers arrive at the grades they give. b. There i s a d i r e c t connection between how hard I j study and the grades I get. 24. a. A good leader expects people to decide for themselves what they should do. b. A good leader makes i t clear to everybody what th e i r jobs are. 25. a. Many times I f e e l that I have l i t t l e influence over the things that happen to me. b. I t i s impossible for me to believe that change or luck plays an important role i n my l i f e . 26. a. People are lonely because they don't t r y to be friendly, b. There's not much use i n tryi n g too hard to please people, i f they l i k e you, they l i k e you. 27. a. There i s too.much emphasis on a t h l e t i c s i n high school. b. Team sports are an excellent way to b u i l d character. 28. a. What happens to me i s my own doing. b. Sometimes I f e e l that I don't have enough control over the d i r e c t i o n my l i f e i s taking. 194 a. Most o f the time I c a n ' t u n d e r s t a n d why p o l i t i c i a n s behave t h e way t h e y do. b. I n the l o n g r u n the p e o p l e are r e s p o n s i b l e f o r bad government on a n a t i o n a l as w e l l as on a l o c a l l e v e l . 

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