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The development of an instrument to evaluate therapeutic nutrition education Hauchecorne, Catherine Morley 1991

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THE DEVELOPMENT OF AN INSTRUMENT TO EVALUATE THERAPEUTIC NUTRITION EDUCATION By CATHERINE MORLEY HAUCHECORNE B.A.Sc., University of Guelph, 1979 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Department of Administrative, Adult and Higher Education) We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA October, 1991 ©Catherine Morley Hauchecorne, 1991 7 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of Mnv wmi /gW?Tdh\M^ AAXLSL* \ ^(^SU\ b A ^ C O ^ O ^ The University of British Columbia Vancouver, Canada Date Q f v ^ r ^ A v O J \W\ DE-6 (2/88) Abstract The growing challenge to c l i n i c a l d i e t i t i a n / n u t r i t i o n i s t s to demonstrate t h e i r effectiveness in order to maintain funding l e v e l s , and the move toward outcome measurement in health care prompted t h i s study. This study was undertaken to develop and test an instrument to i ) measure respondents' perceptions about n u t r i t i o n education (where therapeutic dietary changes were required), i i ) measure dietary change(s) following contact with a d i e t i t i a n , and i i i ) reveal any unintended effects of n u t r i t i o n education. Adult ambulatory oncology patients who had talked with a d i e t i t i a n at the B.C. Cancer Agency were the respondents. Interviews with key informants led to the development of the Value of Nutrition Education conceptual framework. The framework was the basis for the questions for the.next set of interviews. Interviews with a second group of respondents provided a range of responses to the questions. Once a f i n a l draft of the instrument was agreed to by the expert panel, a t h i r d group of respondents p i l o t tested the instrument. The expert panel c r i t i q u e d each of the steps involved in instrument development and testing. I n i t i a l and after one week returns indicated instrument r e l i a b i l i t y . Respondents reported that they had benefitted from n u t r i t i o n education in terms of improved physical well-being after making dietary changes and improved psychological well-being following interaction with a d i e t i t i a n . The instrument was not useful as a measure of dietary change. As well as providing a measure of reported benefits of n u t r i t i o n education, results can be used to guide decision making about n u t r i t i o n education practice. i i i TABLE OF CONTENTS ABSTRACT i i LIST OF TABLES v i i LIST OF FIGURES v i i i ACKNOWLEDGEMENTS ix CHAPTER ONE: INTRODUCTION 1 Statement of the Problem.. 1 Purpose 5 Research Questions 5 De f i n i t i o n of Terms 6 Assumptions 7 J u s t i f i c a t i o n of the Study 8 CHAPTER TWO: REVIEW OF THE LITERATURE 9 Nutrition Education 9 Defini t i o n s 9 Purpose of Nutritio n Education ^ 11 Challenges in Nutritio n Education... 11 Gerontological Considerations in Nutrition 15 The Health Education Perspective 16 Patient Education Research 16 Nutrition Education Evaluation Research 17 The Concept of Value in Health Care 21 Medicine 21 Nutrition and Di e t e t i c s 24 Oncology 25 Summary 26 iv CHAPTER THREE: METHODOLOGY 28 Overview 28 Description of the Research Methodology 29 Research Design 30 Question Formulation 31 Selection of Key Informants 31 Data C o l l e c t i o n and Recording 31 Key Informant Interview Schedule 32 Data Processing and Analysis 33 Assessment of Progress Made i n Instrument Development 33 Response Formulation 33 Selection of Interview Respondents 33 Data C o l l e c t i o n and Recording 34 Data Processing and Analysis 35 Assessment of Progress Made in Instrument Development 35 Instrument P i l o t Testing 37 Selection of Respondents 37 Data Co l l e c t i o n and Recording 37 Data Processing and Analysis 37 Assessment of Progress Made in Instrument Development 38 Limitations 39 V CHAPTER FOUR: FINDINGS AND DISCUSSION 40 Findings 40 Instrument Development 40 Key Informant Interviews: VAE Adaptation and Question Formulation 40 D e f i n i t i o n of Terms: Value of Nutrition Education 41 Instrument Formulation 43 Response Formulation Interview Schedule 44 Instrument P i l o t Test 46 Rate of Return 46 V a l i d i t y 46 R e l i a b i l i t y 47 Findings from P i l o t Test - A l l Respondents... 47 Findings about Dietary Change 54 Findings about Symptom Management/ Rehabilitation 57 Instrument Refinement/Rewording 66 Discussion 69 Answering the Research Question and Subsidiary Questions 69 Worthiness of the Instrument to Improve Practice 69 Addressing the Components of the Value of Nutritio n Education Framework 73 Assessing Dietary Change 75 Unintended E f f e c t s of Nutrition Education 76 Summary 78 CHAPTER FIVE: SUMMARY AND RECOMMENDATIONS 79 Summary 79 Limitations 82 Related Observations 83 Recommendations 84 Application of the Instrument 84 Comments about the Research Design and Research Findings 87 Future Directions in Nutrition Education Evaluation 88 REFERENCES 90 APPENDIX A: Key Informant Instructions and Consent 94 APPENDIX B: Respondent Instructions and Consent 95 APPENDIX C: Evaluation of Nutritio n Education ( o r i g i n a l ) 96 APPENDIX D: Raw Data - A l l Respondents 100 APPENDIX E: Raw Data - I n i t i a l and After One Week Returns 102 APPENDIX F: Raw Data - Symptom Management Respondents.... 104 APPENDIX G: Raw Data - Rehabilitation Respondents 106 APPENDIX H: Nutrition Education Evaluation Instrument Guidelines for Use and Revised Version 108 v i i LIST OF TABLES Table I: Value of Nutritio n Education (VNE) 42 Table I I : Spearman Correlation C o e f f i c i e n t s and Proportion of Predictable Variance for I n i t i a l and After One Week Returns for L i k e r t Response Statements in Item Six of Nutrition Education Evaluation Instrument 48 Table I I I : Results from Instrument P i l o t Test for A l l Respondents and Symptom Management and Rehabilitation Groups 49 Table IV: Grouped L i k e r t Scale Responses (in percentages) to Item Six Statements of Nutritio n Education Evaluation Instrument - A l l Respondents 51 Table V: Grouped L i k e r t Scale Responses (in percentages) to Item Six Statements of Nutrition Education Evaluation Instrument - Symptom Management Group 58 Table VI: Grouped L i k e r t Scale Responses (in percentages) to Item Six Statements of Nut r i t i o n Education Evaluation Instrument - Rehabilitation Group 59 v i i i LIST OF FIGURES Figure 1: The Patient's Value Chain 22 ix Acknowledgements Thanks go to my husband, Jean-Claude, and my daughters, Sophia and Jeanine, for reminding me during the course of t h i s project when i t was time to eat and time to sleep. Thanks also to my friends and colleagues who served as the expert panel for providing encouragement when I needed i t and for c r i t i q u i n g my every move and thought when I needed that. They are Shirley Fisher, R.D.N.; Angela Bowman, R.D.N.; Satnam Sekhon, R.D.N, and Glen Downie, B.S.W. of the B.C. Cancer Agency; Karol Traviss, R.D.N, of University Hospital, U.B.C. Site and Yvonne Grohmuller, R.D.N, of Vancouver General Hospital. Thanks also go to Dr. Tom Sork, Dr. Susan Barr and Dr. Dan Pratt for t h e i r advice, guidance and encouragement. 1 CHAPTER ONE: INTRODUCTION A review of the l i t e r a t u r e in n u t r i t i o n and d i e t e t i c s revealed limited reporting of evaluations of therapeutic n u t r i t i o n education services, although evaluation of n u t r i t i o n education directed to healthy individuals or groups (the general public, school classes, prenatal classes) was well covered. This study was undertaken to develop and test an instrument to i) measure respondents' perceptions about n u t r i t i o n education (where therapeutic dietary changes were required), i i ) measure dietary change(s) following contact with a d i e t i t i a n , and i i i ) reveal any unintended effects of n u t r i t i o n education. Results were patients' perceptions of th e i r contact with a d i e t i t i a n , and the impact of n u t r i t i o n education on physical and emotional well-being, rather than d i e t i t i a n s ' views of the effects of t h e i r service. A panel of five d i e t i t i a n / n u t r i t i o n i s t s and one medical s o c i a l worker determined that the instrument was useful as a measure of the effectiveness of n u t r i t i o n education. D i e t i t i a n s can use the results to plan n u t r i t i o n education programs that complement patient preferences, with the aim of improving physical and psychological outcomes. Statement of the Problem While studies to determine the e f f e c t of therapeutic dietary manipulation on disease morbidity and mortality are common, evaluations of the educational component of n u t r i t i o n a l care are not. Nutrition education for health promotion or disease prevention has been studied using measures of knowledge gains (Poolton, 1972), or changes in comprehension and s k i l l (Hanson & Schutz, 1981). The problem in evaluating n u t r i t i o n 2 education for disease management i s that there are no appropriate assessment methods for therapeutic intervention. Knowledge gains and comprehension of n u t r i t i o n information are not measures of change in dietary behaviour ( B a r t l e t t , 1985) or improved well-being as a re s u l t of change in diet and/or interaction with a d i e t i t i a n . N utrition education i s a process that can help individuals develop a knowledge base, select n u t r i t i o n a l l y adequate diets and develop decision making s k i l l s regarding food choices ( G i l l e s p i e & Shafer, 1990). This process i s the same for preventive or therapeutic n u t r i t i o n education. Appropriate dietary change depends on possession of appropriate knowledge and s k i l l , however, one cannot measure knowledge gains or displays of s k i l l and assume that eating behaviour has changed or w i l l change (Sims, 1981). Nutrition intervention, either preventive or therapeutic, i s often assessed in terms of outcomes (disease incidence or symptom control) without having established that the educational component of n u t r i t i o n a l care resulted in dietary change. I t i s important to establish that n u t r i t i o n education has led to changes in dietary habits i n order to study the relationships between dietary change and disease incidence for disease prevention programs (Sims, 1981) and symptom management for therapeutic n u t r i t i o n programs. An evaluation method that would be useful would be one where results could be used to plan or refine n u t r i t i o n education approaches that enhance dietary change, with the aim of reducing p a t i e n t / c l i e n t reliance on the health care system (Rickel, 1981). Results would also be used to decide the most ef f e c t i v e and e f f i c i e n t a l l o c a t i o n of limited n u t r i t i o n education resources (Johnson & Johnson, 1985). 3 A dilemma in therapeutic n u t r i t i o n intervention i s that individuals with conditions requiring dietary modifications as a component of medical treatment may not improve physically, even with a change in diet ( B e l l , 1986). This l i m i t s the usefulness of r e l a t i n g measures of patient progress to resources u t i l i z e d for quality assurance, cost control or cost benefit/effectiveness purposes. Despite lack of measurable improvement in t h e i r medical condition, c l i e n t s often express appreciation for n u t r i t i o n services, for example, they were grateful that the d i e t i t i a n cared to counsel them and took the time to l i s t e n ( B e l l , 1986). For therapeutic purposes, changes in eating behaviour are believed to improve health and well-being, and i t i s the d i e t i t i a n / c l i e n t interaction that i s believed to promote changes in eating behaviour. One can reason that the interaction with the d i e t i t i a n would contribute to improvements in c l i e n t s ' health and well-being. Well-being involves physical and psychological components. The former i s related to symptom control that may be associated with dietary change. The l a t t e r involves the c l i e n t ' s r elationship with the d i e t i t i a n and the psychological aspects that relate to improved physical well-being. A useful evaluation of n u t r i t i o n education would provide information on c l i e n t s ' perceptions of how they benefitted from n u t r i t i o n education, i n terms of t h e i r interaction with the d i e t i t i a n and enhancement of t h e i r a b i l i t i e s to manage t h e i r condition. C l i e n t perceptions would complement measures of the physiological e f f e c t s of n u t r i t i o n intervention ( L i t t l e & A l j a d i r , 1986). The need for an alternate or complementary evaluation measure i s p a r t i c u l a r l y pronounced where physical deterioration due to chronic i l l n e s s continues despite change 4 in diet, and where n u t r i t i o n education may have an impact on quality of l i f e despite lack of physical improvement (Edwards et a l , 1986; B e l l , 1986). Responding to c l i e n t feedback about n u t r i t i o n education encounters has the advantage of not relying on the best guess of the educator or evaluator as to what approaches would improve the effectiveness of n u t r i t i o n education. A downfall of many evaluations i s that c l i e n t s have not been consulted about what information or s k i l l development would help them to manage t h e i r diets or how they f e e l they have benefitted from contact with a d i e t i t i a n . Bopp (1989) suggested that physicians explore patients' views about medical encounters (what they appreciated or f e l t they benefitted from) in order to provide services that complement what patients value. D i e t i t i a n / n u t r i t i o n i s t s could also employ t h i s approach to evaluate n u t r i t i o n education for diet related chronic diseases. The Value-Added Ambulatory Encounter (VAE) was proposed as a conceptual framework to study the value patients attach to medical encounters (Bopp, 1989). When value i s added, patients view the encounter as useful, regardless of whether or not they improve physically. Value i s derived through contributions by the physician (and support services and f a c i l i t i e s ) to patients' well-being, interpersonal need fu l f i l m e n t , reduction of uncertainty, control, convenience and time conservation. Many of the concepts Bopp outlined for medical practice are similar in n u t r i t i o n and d i e t e t i c s , therefore, i n t h i s study the VAE was adapted to n u t r i t i o n practice as a means to evaluate c l i e n t feedback about n u t r i t i o n education. 5 With economic r e s t r a i n t in health care i t i s necessary to determine what impact n u t r i t i o n education services have on outcomes. For t h i s study, outcomes were c l i e n t s ' a b i l i t i e s to change t h e i r diets and the impact of contact with a d i e t i t i a n on physical and psychosocial well-being. These measures would be useful to support the existence and expansion of, or prevent cutbacks i n , n u t r i t i o n education services. Purpose The purpose of t h i s study was to develop and test an instrument to evaluate n u t r i t i o n education for people with diet related chronic diseases. The evaluation was aimed at examining (a) c l i e n t s ' perceptions of n u t r i t i o n education (the usefulness of contact with a d i e t i t i a n and the n u t r i t i o n information received), (b) the appropriateness of c l i e n t s ' reported change in eating behaviour compared to the d i e t i t i a n s ' documented n u t r i t i o n care plan and (c) other unintended effects of n u t r i t i o n education. The Value-Added Ambulatory Encounter (VAE) was used as the conceptual framework. Research Questions The question to be answered by t h i s study was-. 1. Does the instrument developed in t h i s study, (based on the Value-Added Ambulatory Encounter), provide worthwhile information on which to base decisions about n u t r i t i o n education practice? 6 Subsidiary questions were: a) Does the instrument address each of the components of the VAE (as adapted for n u t r i t i o n education); do the results of the p i l o t test y i e l d information about improved physical well-being, interpersonal need fulf i l m e n t , reduction of uncertainty, control and a c c e s s i b i l i t y ? b) Do the results of the instrument p i l o t test provide information about the impact of n u t r i t i o n education on eating behaviour change? c) Does the instrument help to reveal unintended effects of n u t r i t i o n education? D e f i n i t i o n of Terms The terms relevant to t h i s study are defined below: Ambulatory patients: those who receive medical care as outpatients. Individuals may be responsible for s e l f care or may r e l y on the support of a caregiver to maintain independent l i v i n g . Diet related disease: chronic disease where n u t r i t i o n a l care may be a component of etiology and/or treatment. D i e t i t i a n / n u t r i t i o n i s t : a n u t r i t i o n professional with r e g i s t r a t i o n in a p r o v i n c i a l or national d i e t e t i c association. May be referred to as d i e t i t i a n or n u t r i t i o n i s t depending on place of work. Effectiveness: a q u a l i t a t i v e assessment of the merit or worth of something. Impact: having an e f f e c t or influence. Nutrition education: the process of imparting n u t r i t i o n knowledge to groups or individuals; includes n u t r i t i o n counselling. 7 Nutrition counselling: the i n d i v i d u a l i z a t i o n of n u t r i t i o n messages through consultation with and interaction with a d i e t i t i a n / n u t r i t i o n i s t . Quality of life-, an individual's perception of s a t i s f a c t i o n with q u a l i t a t i v e aspects of well-being ( L i t t l e & A l j a d i r , 1986). Value: that which i s b e n e f i c i a l or useful. Value-Added Ambulatory Encounter: a conceptual framework for at t r i b u t i n g value, from patients' perspectives, to ambulatory medical encounters (Bopp, 1989). Assumptions The assumptions underpinning t h i s study were that: (a) n u t r i t i o n education impacts on patients, n u t r i t i o n a l l y and otherwise ( L i t t l e & A l j a d i r , 1986), and through questioning, patients are able to report t h e i r perceptions of the impact; (b) a l l patients with chronic i l l n e s s e s share s i m i l a r i t i e s in the i r reliance on e x t r i n s i c resources and potential loss of i n t r i n s i c control (Gallagher, 1988). Since certain chronic diseases require long term dietary changes, i t was assumed that an instrument to evaluate patients' perceptions of the impact of n u t r i t i o n education could be developed from the responses of those who had one disease in common and the instrument could be used to study those with other chronic diseases. For t h i s study respondents were ambulatory oncology patients. The values of cancer patients were considered to be similar to those of patients with other diagnoses, however, testing of the instrument with other groups would be necessary in order to draw any conclusions about t h i s ; (c) ambulatory patients are more l i k e l y to make t h e i r own food choices, 8 function more independently and are generally less sick than hospitalized patients and thus would be able to provide the dietary information required for the study; (d) patients acknowledge the teaching role of d i e t i t i a n s more than the n u t r i t i o n a l assessment and n u t r i t i o n care planning roles. This i s because provision of information i s central to most n u t r i t i o n education e f f o r t s (Sims, 1981) and the d i e t i t i a n ' s teaching role i s often the only one v i s i b l e to patients. J u s t i f i c a t i o n of the Study This study was j u s t i f i e d on two accounts. F i r s t , there i s a need to study the impact of n u t r i t i o n education in therapeutic settings (Johnson & Johnson, 1985; Glanz, 1985). Work in n u t r i t i o n education evaluation has focused on n u t r i t i o n for disease prevention. Advances in n u t r i t i o n education for prevention are not d i r e c t l y applicable to education for diet related diseases because of the d i f f e r e n t n u t r i t i o n a l needs and learning needs of these groups (Gallagher, 1988). The second j u s t i f i c a t i o n i s the importance of acknowledging patients' perceptions. The study of respondents' perspectives on n u t r i t i o n education provides feedback that can be used to improve services. Direct feedback from patients prevents the imposition of health professionals' personal opinions about what approaches and information patients benefit from, p a r t i c u l a r l y when health professionals' views may not r e f l e c t patients' actual preferences for n u t r i t i o n education. 9 CHAPTER TWO: REVIEW OF THE LITERATURE This review brings together l i t e r a t u r e from education, n u t r i t i o n and d i e t e t i c s , and health care. The f i r s t section consists of an examination of what n u t r i t i o n education i s , i t s purpose, challenges in n u t r i t i o n education and strategies to respond to these challenges. Because individuals with chronic diseases tend to be older, a subsection includes l i t e r a t u r e on gerontological considerations in n u t r i t i o n . The next section includes an exploration of research in health education. This i s comprised of patient education and n u t r i t i o n education evaluation. In the t h i r d section, the concept of value i n health care i s examined drawing from medicine, oncology, and n u t r i t i o n . The summary presents a unifying picture of how n u t r i t i o n and d i e t e t i c s can draw on the experience and expertise of other f i e l d s to develop an instrument to evaluate therapeutic n u t r i t i o n education. Nutrition Education Defi n i t i o n s D e f i n i t i o n s of n u t r i t i o n education are as p l e n t i f u l as there are authors on the subject. Authors provide t h e i r own d e f i n i t i o n or description to frame the context of t h e i r writing. Peterson (1980) defined n u t r i t i o n education as the sum t o t a l of the experience, knowledge and s k i l l possessed by the indi v i d u a l and the family used to translate health concerns into the act of buying and consuming food. This d e f i n i t i o n refers to the end r e s u l t of education but not to the process of imparting knowledge to the consumer. Vickery and Hodges (1986) declared a d i s t i n c t i o n between n u t r i t i o n education and n u t r i t i o n counselling in that n u t r i t i o n education i s evaluated in terms of knowledge base and n u t r i t i o n counselling i s evaluated in terms of behaviour change. Counselling was seen as the process of in d i v i d u a l i z i n g i n s t r u c t i o n to enable c l i e n t s to become s e l f s u f f i c i e n t in managing personal n u t r i t i o n a l care. Counselling would apply to individuals or small groups whereas, education would involve large groups or mass media campaigns. The American D i e t e t i c Association (ADA) position paper on n u t r i t i o n education for the public ( G i l l e s p i e & Shafer, 1990) combined these two views to define n u t r i t i o n education as a process that a s s i s t s the public in applying knowledge from n u t r i t i o n science and the relationship between diet and health to make food choices. Nutrition education i s a deliberate e f f o r t to improve the well-being of people by assessing the many factors that contribute to food choices, t a i l o r i n g educational methodologies and messages to the target audience and evaluating the results of intervention ( G i l l e s p i e & Shafer, 1990). With the inclusion of behaviour change in the d e f i n i t i o n of n u t r i t i o n education, the difference between n u t r i t i o n education and counselling i s that counselling i s the in d i v i d u a l i z a t i o n of n u t r i t i o n messages and the interaction between the counsellor and the c l i e n t . This could suggest that n u t r i t i o n education i s the attempt to change the eating practices of the general public, and n u t r i t i o n counselling to change the eating practices of an i n d i v i d u a l . A l t e r n a t i v e l y , using the ADA position paper d e f i n i t i o n , n u t r i t i o n education can be considered the t a i l o r i n g of messages for any size group, which could include individuals. For t h i s study, 11 n u t r i t i o n education i s the preferred term, taken to be that which includes counselling. Purpose of Nutritio n Education Hochbaum (1981) viewed the role of n u t r i t i o n education as the creation of favourable conditions of knowledge and affe c t to i n c i t e behaviour change. This includes consideration of s o c i a l , emotional and c u l t u r a l influences on eating behaviour. In order for p a t i e n t s / c l i e n t s to make dietary changes, n u t r i t i o n educators must consider these influences to optimize conditions for change. Sims (1981) considered the patient as a component of a s o c i a l system, r e f e r r i n g to thi s as the ecological systems perspective. The consideration of the many facets of a person i s appropriate when dealing with a target audience of one or thousands. This i s the l i n k between n u t r i t i o n education for normal and therapeutic purposes. The purpose (to educate and inform so that behaviour change can occur) i s the same, as i s the need to consider the ecological perspective of the audience, but the type of change sought and thereby the message, may be d i f f e r e n t (Johnson & Johnson, 1985). The aim of n u t r i t i o n intervention i s to encourage voluntary behaviour change and i m p l i c i t in t h i s i s the need to consider behavioural issues as well as the p r i n c i p l e s of nu t r i t i o n management. Challenges i n Nutrition Education Nutrit i o n educators face many challenges i n fostering changes in c l i e n t s ' eating behaviour. The effectiveness of n u t r i t i o n education i s often questioned because of these challenges and barriers to success (Sims, 1981). This section 12 examines some of the d i f f i c u l t i e s n u t r i t i o n professionals encounter and describes research on factors that have been found to promote c l i e n t behaviour change. A frequent challenge in n u t r i t i o n education i s that eating habits are so long standing that they have become ingrained and occur at a subconscious l e v e l (Glanz, 1985). Not only are changes d i f f i c u l t to make in t h i s s i t u a t i o n but patients/ c l i e n t s may not be aware of t h e i r behaviour and habits. A strategy to deal with habitual behaviour comes from communication theory. Yarbrough (1981) applied communication theory to n u t r i t i o n education and explained that innovations, including n u t r i t i o n a l change, are adopted i f the innovation offers obvious advantages to current p r a c t i c e ( s ) , i f i t i s compatible with the c l i e n t ' s l i f e s t y l e and habits, i f i t i s easier than the practice i t replaces, i f the c l i e n t i s allowed a t r i a l of the proposed change to assess whether i t w i l l work, and i f benefits are demonstrable. Sims (1981) discussed the common practice of aiming n u t r i t i o n education at the cognitive l e v e l , ignoring personal attitudes, values and b e l i e f s . Because these t r a i t s exert such strong influences on dietary behaviour i t i s important that they be considered when planning for and studying the impact of n u t r i t i o n education. This i s p a r t i c u l a r l y true when studying intervention for the chronically i l l , where emotions and b e l i e f s about the disease impact on eating behaviour. Therapeutic dietary recommendations are usually r e s t r i c t i v e and are only one aspect of a complex regime. P a t i e n t s / c l i e n t s may consider dietary changes to be a low p r i o r i t y when compared to other aspects of medical care. For n u t r i t i o n education to promote behavioural change the n u t r i t i o n care 13 plan must be t a i l o r e d to i n d i v i d u a l needs and preferences. The d i e t i t i a n / n u t r i t i o n i s t should consider behavioural, educational and contextual factors when conducting a n u t r i t i o n a l assessment so that counselling can meet the needs of patients in terms of t h e i r usual dietary habits, t h e i r personal s i t u a t i o n and t h e i r learning style (Glanz, 1985; Olson & Kelly, 1989). I t may be preferable to arrange for counselling at a time when n u t r i t i o n i s more of a personal concern to the patient. Hochbaum (1981) stressed that education should focus on decreasing barriers to implementing the dietary change and increasing the attractiveness of adopting new dietary practices. Often t h i s requires the d i e t i t i a n / n u t r i t i o n i s t to s o l i c i t perceived b a r r i e r s from the patient and suggest ways to overcome them. The consideration of impeding factors i s as important for success as the n u t r i t i o n content in the message. This t i e s in with considering the whole person when planning and conducting n u t r i t i o n education (Sims, 1981). The environment in which a patient receives n u t r i t i o n a l counselling i s c r i t i c a l to the success of intervention. Picus (1989) conducted an assessment of common conditions that impeded the effectiveness of counselling. D i e t i t i a n s documented uninviting circumstances in 47% of inpatient counselling sessions. These circumstances included interruptions by medical, nursing and other s t a f f ; d i e t i t i a n ' s pager sounding; patients about to undergo a procedure or go to surgery; radios or t e l e v i s i o n s turned on; patients unwell or sleepy; and i n s t r u c t i o n occurring just p r i o r to discharge from hosp i t a l . Picus concluded that counselling outcomes could be made more e f f e c t i v e i f d i e t i t i a n s circumvented some of these disturbances. Means to accomplish t h i s included posting a procedure-in-progress sign on the door during counselling, arranging for quiet pagers, scheduling alternate times for counselling i f conditions are unfavourable, r e f e r r i n g the patient to an outpatient d i e t i t i a n rather than providing i n s t r u c t i o n at the time of discharge, or postponing sessions when patients are p h y s i c a l l y or psychologically unready to learn (too i l l , t i r e d , or anxious). This approach to counselling i s consistent with the ecological systems perspective; to bear the patient's context i n mind when planning and conducting education sessions (Sims, 1981). Another consideration to improving outcome of n u t r i t i o n education i s to adopt counselling approaches and strategies that enhance patients' a b i l i t i e s to make dietary changes. Glanz (1979) surveyed d i e t i t i a n s about t h e i r usual teaching practices. Reported techniques and methods were categorized as t r a d i t i o n a l , combination or innovative. Glanz encouraged d i e t i t i a n s to use innovative education techniques to improve c l i e n t s ' health status, such as encouraging patients to i d e n t i f y obstacles to successful dietary change, then to think of ways to surmount the b a r r i e r s . T r a d i t i o n a l approaches (for example, the use of food models) were discouraged as they were considered to be outdated. The use of innovative techniques remains to be tested r e l a t i v e to changes in health status. The challenges in n u t r i t i o n education should be considered when planning an evaluation so that the assessment provides feedback on the usefulness of intervention, rather than s o l i c i t i n g information to confirm the organizational and s i t u a t i o n a l d i f f i c u l t i e s that are already known to exist. Evaluation results should provide information on whether or not patients were able to manage t h e i r diets, and whether or not the inte r a c t i o n with the d i e t i t i a n was of any benefit. Gerontological Considerations in Nutrition Most patients with chronic diseases are above 65 years of age. To c i t e two examples; those over 65 years represented 51% of new cancer diagnoses in 1987 in Canada in females and 58% of those in males (Health D i v i s i o n , S t a t i s t i c s Canada, 1989). Eighty percent of deaths from myocardial i n f a r c t i o n in 1987 in B r i t i s h Columbia, occurred i n the over 65 age group with 81% of deaths from a l l other forms of heart disease also occurring in the over 65 year old group (Ministry of Health, 1989). Because chronic diseases often require n u t r i t i o n intervention and because these diseases occur in people over the age of 65 years, gerontological n u t r i t i o n considerations are important to the discussion of p a t i e n t / c l i e n t perceptions about n u t r i t i o n education in order to plan successful n u t r i t i o n education programs for older, chr o n i c a l l y i l l i n d i v i d u als. Madeira and Goldman (1988) found that in a group of over 64 year olds, 47% of eating habit changes were influenced by health problems. Although sensory loss decreased physical perception of food properties, memory and s o c i a l context were important in contributing to the acceptance of food. B r i l e y (1989) inventoried factors that influenced food choices in those greater than 60 years of age. Included were income, household composition, time for food purchasing and preparation, education, health and attitudes. Each of these factors influenced food purchasing and preparation behaviour. An example of the influence of income on eating behaviour i s that those with higher incomes purchase more expensive foods and use more elaborate preparation methods than those with lower incomes. An example of the influence of health on eating behaviour i s where poor health l i m i t s an individual's a b i l i t y to shop and cook. Food intake may be inadequate in quality and quantity and r e l y largely on convenience foods. A therapeutic diet would be d i f f i c u l t to manage under these circumstances. The consideration of factors that influence food choices increases the l i k e l i h o o d of adoption of new dietary practices by reducing b a r r i e r s to change. Other points to consider when planning n u t r i t i o n education programs or sessions are personal values, sensory and motor changes, changes i n cognitive function and s i t u a t i o n a l d i f f i c u l t i e s (Carter et a l , 1989). Gerontological considerations reinforce the importance of the ecological systems perspective in n u t r i t i o n education. Attention to the whole person (Hochbaum, 1981; Carter et a l , 1989) increases the l i k e l i h o o d of success of n u t r i t i o n intervention. These same factors should be considered when planning an evaluation of n u t r i t i o n education. Personal values and other c h a r a c t e r i s t i c s and circumstances should be acknowledged in the evaluation process so that results can be used to plan educational approaches that are consistent with what w i l l help c l i e n t s to make dietary changes and to improve outcomes. The Health Education Perspective Patient education research. B a r t l e t t (1985) summarized p r i n c i p l e s of patient education. These included (a) the quality of education i s more important than the method used, and i n d i v i d u a l i z a t i o n of education i s e s p e c i a l l y important, (b) personalized education i s more ef f e c t i v e than mediated approaches (for example, the use of cassette tapes or videos), requiring e f f e c t i v e interpersonal s k i l l s on the part of the caregiver/instructor, (c) patient knowledge i s necessary but not s u f f i c i e n t for behaviour change, (d) education should be oriented to what patients should do, not know, (e) more attention should be paid to the long term performance of the desired behaviour which necessitates s o c i a l support and" coordinated patient education within the community, and, (f) patient education programs should be coordinated with regular medical care. B a r t l e t t raised the question that i f th i s information i s available, and was derived from research in patient education, why i s i t not being applied? I t appears that neither B a r t l e t t , nor anyone else, has an answer to t h i s question. A useful evaluation of n u t r i t i o n education could be planned by comparing a program or approach to the p r i n c i p l e s outlined by B a r t l e t t . The results from such an evaluation would be useful to plan approaches to n u t r i t i o n education that create conditions favourable to behaviour change and that address p a t i e n t / c l i e n t needs for psychosocial support. Nutrit i o n education evaluation research. Research on the impact of n u t r i t i o n education has taken place in a number of settings and has employed various research methods depending on the s i t u a t i o n being studied. This segment of the l i t e r a t u r e review consists of an examination of these areas of research and the l i m i t a t i o n s of t h e i r use in assessing the impact of n u t r i t i o n education for diet related diseases. 18 Various measures have been employed in evaluating n u t r i t i o n education. Gains in n u t r i t i o n knowledge secondary to n u t r i t i o n education have been studied in school based programs (Poolton, 1972; Banta, 1985) and public education programs (Sims, 1987). As discussed in Chapter 1, the possession of knowledge does not ensure compliance of behaviour to integrate that knowledge (Vickery & Hodges, 1986). A second type of measure i s change in i l l n e s s frequency secondary to n u t r i t i o n education. Disease prevention programs are intended to prevent chronic conditions such as cardiovascular disease and cancer. As discussed in Chapter 1, measures of t h i s kind omit assessment of behaviour change in response to n u t r i t i o n education (Sims, 1981). Changes in disease incidence may have been due to factors besides n u t r i t i o n education, such as the use of medication or change in physical a c t i v i t y . Physical status changes, such as weight, anthropometric or laboratory data, subsequent to therapeutic n u t r i t i o n education (Glanz, 1985) constitute a t h i r d type of measure. These r e f l e c t bodily states rather than behaviour change and are also subject to influences apart from those of n u t r i t i o n education. These measures should not be interpreted as an e f f e c t of n u t r i t i o n education (Gochman, 1988) except i n controlled studies of education versus no education where changes in laboratory values r e f l e c t the impact of educational intervention. The use of cost/benefit analysis (CBA) and cost effectiveness analysis (CEA) in health care have received considerable attention. Disbrow (1989) looked at the use of CBA in n u t r i t i o n services and provided methods to quantify costs and benefits. Green (1977) downplayed the importance of 19 CBAs in health care evaluation because of the lack of adequate data to compute comparable rat i o s between treatments. Green considered cost effectiveness analysis to be a useful evaluation tool where s p e c i f i c outcomes could be i d e n t i f i e d for a p a r t i c u l a r program or service but cautioned against the generalization of cost effectiveness estimates from one well defined s i t u a t i o n or population to d i f f e r e n t situations (Green, 1977). Archambault (1988) advised that CBAs and simi l a r measures have no role in evaluating the ef f e c t of education on patients, nor quality of l i f e , owing to methodological problems. Nutritio n education evaluation should examine what the effe c t s of education are and why and how i t a l t e r s the a b i l i t y of an in d i v i d u a l to make informed food choices (Edwards et a l , 1986; Sims, 1987; Achterberg, 1988). A l l aspects of the program should be monitored (content, delivery methods, instructor, physical arrangements), not just the end res u l t s . This allows for diagnosis of problem areas i n program delivery and the determination of changes required to make improvements in the program. Programs need to be continually evaluated and modified in order to meet changing patient needs (McNutt & Steinberg, 1981). Ongoing evaluations, allowing for the development of a program or educational approach over time, w i l l help to s a t i s f y evolving c l i e n t needs. The determination of why a program does or does not work feeds back to program development to reassess the service being delivered and determine what modifications may be necessary (Hanson & Schutz, 1981; Edwards et a l , 1986). Social psychology theory can be used to evaluate n u t r i t i o n education (Hochbaum, 1981). For example, the theory that 20 believing an a c t i v i t y has benefits w i l l prompt adoption of the behaviour, can be studied in the context of n u t r i t i o n education. Nutrition intervention must impact on patients' b e l i e f s about food and n u t r i t i o n in order to promote confidence in the message, thus leading to dietary change. For evaluation, respondents' reports of personal benefits of n u t r i t i o n education could provide insight into the role of the n u t r i t i o n encounter in improving quality of l i f e and empowering respondents to change t h e i r behaviour. Nutrition education i s evolving as are the methods used to evaluate i t . I t had been thought that n u t r i t i o n education could draw on the results of advertising research for planning program delivery methods. Advertising research results are not d i r e c t l y applicable to n u t r i t i o n education as advertising i s aimed at the sale of one or two items (Fleming & Brown, 1981) and n u t r i t i o n education i s the promotion of a concept of n u t r i t i o n a l change, rather than the teaching of a c o l l e c t i o n of facts ( G i l l e s p i e , 1981). The evolution of thought about delivery methods i s an example of how n u t r i t i o n education borrows from other d i s c i p l i n e s but the results are not always f r u i t f u l . Evaluation w i l l develop in much the same way, through t r i a l and error. Nutrition education evaluation methods draw from work in psychology, sociology and education. The recognition of inadequacies of past methods and the growing acceptance of q u a l i t a t i v e methods have added new dimensions to the evaluation of n u t r i t i o n education programs (Achterberg, 1988). 21 The Concept of Value in Health Care Medicine The Value-Added Ambulatory Encounter (VAE) i s a conceptual framework suggested by Bopp (1989) to be used by physicians to determine i f t h e i r practice i s consistent with t h e i r patients' value chains (Figure 1) in order to att r a c t and keep patients. When services are provided that relate to what patients f e e l i s desirable or important i t i s expected that there w i l l be greater c l i e n t s a t i s f a c t i o n with the care provider, regardless of whether the patient's condition improves. Bopp described six categories of patient need in a medical encounter: improved well-being, interpersonal psychological need fu l f i l m e n t , reduction of uncertainty, control, convenience, and time conservation. Improved well-being relates to physical management of the condition and interpersonal psychological need fulf i l m e n t relates to the degree of caring and understanding shown by the caregiver. Reduction of uncertainty relates to the perceived quality of care received. When patients f e e l they are being provided high quality care and the care i s appropriate (for example, they have not been subjected to unnecessary testing or medications), value i s added through reduction of uncertainty. Control pertains to patients' perceptions of t h e i r role in planning and managing t h e i r own care. As medical encounters are usually asymmetrical, with the care provider giving advice and the patient expected to comply, patients often perceive a loss of control. Control i s added when patients are aware of and have input into treatment plans. Convenience refers to c l i n i c location, convenient scheduling of services and a c c e s s i b i l i t y of the c l i n i c entrance and 22 Improved well-being Prevention or cure of disease Relief of symptoms and/or pain Rehabilitation Reassurance illness, prognosis, and lifestyle Hope Interpersonal psychological need fulfillment Attention Affection Understanding Empathy Compassion Support Reduction of uncertainty Provider integrity and competence Service delivery process effectiveness and efficiency Control Provider-patient interaction Understand and predict sequence of events Goals and objectives ol diagnosis and treatment program • Convenience Location Times service is available User friendly entry, exit, and follow-up processes Time conservation Extracycle time Intracycle time Figure 1: The patient's value chain Note. From "Value-added ambulatory encounters: A conceptual framework" by K.D. Bopp, 1989, Journal of Ambulatory Care Management. 12.(3), p. 37. Copyright 1989 by Aspen Publishers, Inc. Reprinted by permission. 23 w a i t i n g a r e a s . When p a t i e n t s ' needs f o r a c c e s s i b i l i t y a r e a d d r e s s e d , v a l u e i s added. Time c o n s e r v a t i o n r e f e r s t o t h e amount o f t i m e i n c u r r e d w a i t i n g t o g e t an a p p o i n t m e n t and amount o f t i m e s p e n t i n w a i t i n g and e x a m i n i n g rooms. When t i m i n g i s e f f i c i e n t and p a t i e n t s ' t i m e i s r e c o g n i z e d as v a l u a b l e , v a l u e i s added. A l t h o u g h Bopp s u g g e s t e d t h a t p h y s i c i a n s use t h e VAE t o f i n d ways t o improve t h e s e r v i c e s p r o v i d e d a t t h e i r c l i n i c s i n o r d e r t o a t t r a c t and r e t a i n p a t i e n t s , o t h e r h e a l t h p r o f e s s i o n s i n t e r e s t e d i n p r o v i d i n g s e r v i c e s t h a t b e t t e r s u i t t h e p r e f e r e n c e s o f t h e i r c l i e n t s , i n an e f f o r t t o improve outcome, ca n a d a p t t h e c o n c e p t s o f t h e VAE t o a d d r e s s p a r t i c u l a r a s p e c t s o f t h e i r p r o f e s s i o n s . The r e a s o n s f o r a s s e s s i n g one's s e r v i c e i n c l u d e t h e o p t i m a l use o f r e s o u r c e s t o c o n s e r v e t i m e , p e r s o n n e l , and money. T r e a t m e n t d e c i s i o n s a r e o f t e n made w i t h l i t t l e c o n c e r n f o r p a t i e n t s ' p r e f e r e n c e s and a r e u s u a l l y b a s e d on t h e e x p e r i e n c e and judgement o f t h e h e a l t h c a r e p r o v i d e r . More e f f e c t i v e s t r a t e g i e s f o r p a t i e n t c a r e , b a s e d on p a t i e n t f e e d b a c k , c a n i n c r e a s e p a t i e n t s a t i s f a c t i o n w i t h a s e r v i c e and may improve a d o p t i o n o f d i e t a r y c h a n g e s ( S c h w a r t z , 1988). M a t u l i c h and F i n n (1989) s t u d i e d what p a t i e n t s wanted i n a m b u l a t o r y c a r e , e x p e c t i n g t o f i n d t h a t p a t i e n t s v a l u e d h i g h l y q u a l i f i e d c a r e g i v e r s and modern f a c i l i t i e s . I n s t e a d , t h e a u t h o r s f o u n d t h a t p a t i e n t s v a l u e d empathy and c a r i n g most o f t e n , f o l l o w e d by u p - t o - d a t e e q u i p m e n t i n t h e f a c i l i t i e s . The p h y s i c a l s e t t i n g was n o t o f c o n c e r n t o r e s p o n d e n t s and t h e c r e d e n t i a l s o f t h e c a r e g i v e r s were o f m i n o r i m p o r t a n c e . T h i s i s an example o f how p a t i e n t ' s p r e f e r e n c e s and v i e w s s h o u l d be c o n s i d e r e d i n p l a n n i n g a m b u l a t o r y c a r e s e r v i c e s . W i t h o u t t h i s u n d e r s t a n d i n g , h e a l t h c a r e p r o f e s s i o n a l s c o u l d be p r o v i d i n g what they consider to be excellent services and f a c i l i t i e s , yet services would not meet with the expectations of the consumer. The results may be uncooperative patients and disappointing treatment e f f o r t s . N u t r i t i o n and D i e t e t i c s C l i e n t s a t i s f a c t i o n with ambulatory d i e t e t i c services, professional competence of d i e t i t i a n s and the art of care were rated favourably in a study undertaken to develop a scale to measure s a t i s f a c t i o n with d i e t e t i c services (Schwartz, 1988). Patient s a t i s f a c t i o n with d i e t e t i c services can be considered reduction of uncertainty in the VAE (Bopp, 1989). By f e e l i n g confident about the a b i l i t y and competence of the d i e t i t i a n / n u t r i t i o n i s t , patients' w i l l f e e l confident that n u t r i t i o n care plans and the n u t r i t i o n information received are appropriate for t h e i r s i t u a t i o n and they may be more in c l i n e d to change t h e i r diets. Listening allows patients to verbalize t h e i r concerns and builds respect thereby increasing the importance patients place on the d i e t i t i a n s ' advice ( B e l l , 1986). Techniques to improve the effectiveness of communication with patients and families serve to increase the chances of successful dietary change by f u l f i l l i n g interpersonal needs. These techniques include repeating information, providing written summaries of the verbal advice, encouraging questions, using simple and d i r e c t language, reducing length of sessions, v i s i t i n g often, and knowing when enough has been said. Well-being may increase secondary to n u t r i t i o n education when patients make changes in food consumption and symptoms are controlled. Physical well-being contributes to psychological well-being because immediate concern about one's morbidity and mortality i s reduced. The change in well-being may also be the re s u l t of having interpersonal communication needs met, in that the d i e t i t i a n expressed i n t e r e s t and concern about the patient's personal s i t u a t i o n and attempted to f i n d ways to resolve the n u t r i t i o n a l d i f f i c u l t i e s ( L i t t l e & A l j a d i r , 1986). Providing patients with opportunities to make decisions about food choices allows for gains in personal control over an aspect of treatment and thereby over the medical condition. Convenience and time conservation, as described in the VAE, are applicable in certain settings for ambulatory n u t r i t i o n services, depending on the location of the d i e t i t i a n / n u t r i t i o n i s t ' s o f f i c e , but would not have as large a bearing as on medical practice where c l i e n t s are often required to attend many d i f f e r e n t appointments to seek the opinions of a variety of s p e c i a l i s t s or to have diagnostic tests done. Oncology Success of medical intervention in oncology i s measured i n fiv e year s u r v i v a l : the percentage of patients a l i v e or disease free fi v e years af t e r diagnosis. This i s a useful measure when comparing the e f f e c t of a new cancer treatment method to an accepted protocol. Measuring patients' derived benefits from n u t r i t i o n intervention in t h i s way i s inappropriate because the impact of n u t r i t i o n intervention may decrease morbidity in the short term but i s un l i k e l y to improve survival ( L i t t l e & A l j a d i r , 1986). In n u t r i t i o n intervention, i t i s more useful to study how interactions with d i e t i t i a n / n u t r i t i o n i s t s impact on patients' physical and emotional well-being. This supports the use of the VAE to study patients' feedback about t h e i r n u t r i t i o n education experiences. A nursing needs assessment of n o n i n s t i t u t i o n a l i z e d cancer patients found that information needs predominated, mostly to meet psychological need. The provision of information was found to decrease anxiety and improve coping (Wingate & Lackey, 1989). This lends support to L i t t l e and A l j a d i r ' s (1986) assertion that outcome of n u t r i t i o n intervention in cancer be assessed in terms of quality of l i f e . N utrition education can enhance quality of l i f e by providing information to enable individuals to cope with t h e i r condition. Quality of l i f e could be considered improved physical and psychological well-being due to symptom management, anxiety reduction about appropriateness of care and the perception of control over one's condition. Summary The i d e n t i f i c a t i o n and provision of services that are consistent with patients' preferences i s addressed in the l i t e r a t u r e of many health professions. In applying what has been learned in other f i e l d s to n u t r i t i o n and d i e t e t i c s , i t appears that n u t r i t i o n information i s important to enable patients to manage t h e i r disease or condition. Nutrition education can f a c i l i t a t e change in eating behaviour that i s intended to improve physical and psychological well-being. There i s a challenge to determine what benefits are derived from n u t r i t i o n education from patients' perspectives. By examining what patients thought of n u t r i t i o n education and whether or not they were able to make dietary changes, services can be targeted to patient preferences in an e f f o r t to improve outcome. As well, the role of n u t r i t i o n education for diet related diseases can expand to acknowledge and incorporate supportive and compassionate aspects of care. This w i l l be of p a r t i c u l a r benefit where t r a d i t i o n a l measures of n u t r i t i o n intervention have led to discouragement of nu t r i t i o n p r a c t i t i o n e r s about the outcome of intervention and, in some cases, actual or threatened reduction in n u t r i t i o n services owing to lack of measurable outcomes. A d i f f i c u l t y in adopting a new approach to n u t r i t i o n education evaluation i s that patients, d i e t i t i a n s and the health care system are unfamiliar with, and perhaps uncomfortable with, thinking that n u t r i t i o n education impacts on patients i n some way other than p h y s i o l o g i c a l l y . CHAPTER THREE: METHODOLOGY 28 Overview The concepts addressed in the l i t e r a t u r e review - assessing patients' perspectives on benefits derived from medical care, adopting an ecological or person centred approach to providing care, and assessing the impact of nu t r i t i o n education on quality of l i f e - were considered in developing and testing the evaluation instrument in thi s study. The instrument was designed to obtain information about what respondents thought about the n u t r i t i o n a l advice they had received and th e i r interaction(s) with a d i e t i t i a n , and respondents' reports of dietary change. Included in the evaluation were patients' perceptions of the competence and c r e d i b i l i t y of the d i e t i t i a n , the usefulness of information received, the impact of n u t r i t i o n counselling on physical and emotional well-being, personal control stemming from managing one's food intake and dietary change following consultation with a d i e t i t i a n . Patients' declared dietary changes were compared to the d i e t i t i a n s ' documented n u t r i t i o n care plan. Instrument development and testing involved three stages. The f i r s t was the development of the sel f administered instrument. This process consisted of key informant interviews, adapting the Value-Added Ambulatory Encounter (VAE) to n u t r i t i o n education based on key informant interview data, developing questions that addressed the components of the revised VAE, interviewing respondents who had talked with a d i e t i t i a n to establish a range of responses to the questions, and f i n a l l y , formulating the instrument by streamlining questions and responses. The second stage was 29 p i l o t t esting. The f i n a l stage was the assessment of the worth of the instrument; did the results provide data that would be useful to n u t r i t i o n education practice? An expert panel of fiv e d i e t i t i a n / n u t r i t i o n i s t s and one medical s o c i a l worker reviewed each stage of instrument development and testing. This served as a check on data analysis and allowed for input into, and approval of, plans for the next step in the study. Description of the Research Methodology Interviewing of c l i e n t s and focus groups with expert panel members were the methods of data c o l l e c t i o n and analysis used to develop an instrument to assess the impact of n u t r i t i o n education in patients with diet related diseases. P i l o t testing consisted of administering the instrument to respondents who had talked with a d i e t i t i a n while attending the B r i t i s h Columbia Cancer Agency for treatment or follow-up. Responses were analyzed to assess the worth of the instrument in obtaining results that could be acted upon to enhance n u t r i t i o n education practice. These enhancements could include the planning of innovative approaches to therapeutic n u t r i t i o n counselling, increased patient acceptance and integration of n u t r i t i o n advice to promote dietary change, and improved d i e t i t i a n / n u t r i t i o n i s t job s a t i s f a c t i o n by recognizing the importance of n u t r i t i o n in quality of l i f e . The target group was individuals attending the ambulatory c l i n i c at the B r i t i s h Columbia Cancer Agency in Vancouver. Oncology patients were an appropriate group to involve since tumour and treatment side effects are often treated by dietary means. Ambulatory patients were studied as they were more l i k e l y than hospitalized patients to select and be involved in the preparation of t h e i r own meals. These factors increased the l i k e l i h o o d that patients could report on t h e i r eating behaviour. Research Design Instrument development and testing occurred as follows: Key informant patients were i d e n t i f i e d by the B.C. Cancer Agency d i e t i t i a n s . Semi-structured interviews were conducted with f i v e key informants using open-ended questions. The audiotaped interview data were analyzed by categorizing the data into the components of the Value-Added Ambulatory Encounter (VAE). The Value of Nutrition Education (VNE) framework thus developed, served as the base for questions to guide the next set of interviews. The expert panel met to discuss and agree on the VNE based on t h e i r c o l l e c t i v e experience as health care professionals. The panel reviewed the questions for the next set of interviews to ensure that a l l categories of the VNE were adequately and appropriately addressed. Indepth open-ended interviews were conducted with nine respondents to obtain a range of patient responses to the questions. The audiotaped interview data were analyzed and a s e l f administered instrument was drafted. The panel reconvened to approve the instrument and suggested a p r e - p i l o t test t r i a l to ensure patient comprehension of the content and patient a b i l i t y to respond. Four patients pretested the instrument for r e a d a b i l i t y and comprehension and provided an estimate of the time required to complete the instrument. Thirty-nine respondents p i l o t tested the instrument. The results were analyzed and a summary was prepared for review by the expert panel. The panel assessed the usefulness of the results i n planning and evaluating n u t r i t i o n education services. Question Formulation  Selection of Key Informants Key informants were i d e n t i f i e d by the B.C. Cancer Agency d i e t i t i a n s . These were individuals who had expressed appreciation for n u t r i t i o n education services in that the service led to improved physical well-being or increased a b i l i t y to cope with t h e i r condition. Attempts were made to include individuals who had concerns or complaints about the service in order to provide an equal representation of views in question development. Although not available for key informant interviews, individuals with these views were interviewed at a l a t e r stage in instrument development when generating the range of responses. Key informants had had symptoms or personal situations requiring n u t r i t i o n intervention. Not a l l key informants had experienced symptom resolution to have expressed appreciation for n u t r i t i o n intervention. This was consistent with the VAE framework which suggests that patients need not get well to derive value from medical services (Bopp, 1989). Data C o l l e c t i o n and Recording Semi-structured interviews were conducted with f i v e key informants using open-ended questions. P r i o r to p a r t i c i p a t i o n , informants received an explanation of the 32 purpose of the study and signed a consent form agreeing to be tape recorded (Appendix A). The semi-structured interview format, allowed informants to contribute any information they f e l t worthwhile, yet permitted the researcher to guide the discussion. The questions e l i c i t e d information on informants' understanding of the symptoms that required n u t r i t i o n intervention, the dietary changes that were suggested and any changes made in dietary behaviour, informants' perceptions of the advice given and how i t was or was not useful. Key Informant Interview Schedule 1. Why did you see a d i e t i t i a n ? 2. What advice did you get? 3. What changes were you to make? 4. What did you do after receiving t h i s information? 5. What changes did you make? 6. Did your food intake/eating behaviour change? How? 7. How did t h i s go? Was i t easy/hard? 8. What happened to your symptoms? 9. Did you experience any change physically? emotionally? 10. Besides food related information and advice, did seeing a d i e t i t i a n help you in other ways? Explain. 11. Did you f e e l able to change your diet to meet your special needs? 33 Data Processing and Analysis Tape recorded responses were analyzed and the content categorized based on the components of the VAE. Content categorization led to adaptation of the VAE to create the Value of Nutritio n Education (VNE) framework. Questions were developed that addressed each of the points in the VNE. The interview schedule (discussed in Chapter 4), was administered to a group of respondents to obtain a range of responses to each of the questions. Assessment of Progress Made in Instrument Development The expert panel assessed the appropriateness of the categorization of key informant responses and the VNE framework that had been developed. The questions for response formulation were reviewed and refinements were made to ensure that the questions covered a l l points in the VNE. Response Formulation  Selection of Interview Respondents Respondents were selected by screening a l l medical records at tumour s i t e c l i n i c s for n u t r i t i o n chart notes. When a n u t r i t i o n note was located, a c l i n i c nurse was asked about the appropriateness of approaching the in d i v i d u a l to parti c i p a t e in the study, given t h e i r psychological state and physical condition. C r i t e r i a for inclusion in the study were that the respondents -had received n u t r i t i o n counselling as an outpatient from a B.C. Cancer Agency d i e t i t i a n ; -was 19 years and older; 34 -was capable of p a r t i c i p a t i n g i n the interview process (not too i l l , d i s t r a c t e d ) , and; -was fluent in English. Literacy was not a requirement of p a r t i c i p a t i o n as responses were tape recorded and respondents were not required to read or write during the interview process. Respondents had d i f f e r e n t tumour s i t e s . Because the d i e t i t i a n s ' areas of r e s p o n s i b i l i t y were divided by tumour s i t e , respondents from various s i t e s were required in order to avoid assessing the a b i l i t i e s of a p a r t i c u l a r d i e t i t i a n . This also avoided slanting the data toward the views expressed by those with the same tumour and treatment related side e f f e c t s . There was no benefit in comparing patients who had received n u t r i t i o n education with those who had not as thi s would have required individuals to comment on a service that they had no personal knowledge of and may not have known existed (National I n s t i t u t e of Health, 1982). Potential respondents were approached by the researcher and asked the screening questions "Have you talked with a d i e t i t i a n / n u t r i t i o n i s t while an outpatient at t h i s c l i n i c ? " A negative response ruled the person i n e l i g i b l e for the study. If the response was "yes" the researcher outlined the purpose of the study and had respondents sign the consent form (Appendix B). Data C o l l e c t i o n and Recording The questions developed through analysis of the key informant data guided the interviews. Responses were tape recorded. Respondents were encouraged to answer f r e e l y in an unstructured fashion. 35 Data Processing and Analysis Tape recorded responses to each of the interview questions were analyzed to produce a range of responses. Many drafts of the instrument were written and cri t i q u e d by members of the expert panel and other d i e t i t i a n / n u t r i t i o n i s t s . The f i n a l draft (Appendix C) consisted of two questions with yes/no c i r c l e choice responses, one question with responses to be selected from a l i s t , two questions where written responses were needed and 13 statements where respondents were to indicate on a L i k e r t scale how much they agreed or disagreed with a statement. Assessment of Progress Made i n Instrument Development In reviewing the draft of the instrument, the expert panel considered layout, content and wording (Kornhauser and Sheatsley, 1976). The points included in the review were: ...pertaining to layout -written in clear, simple language? -legible? -included clear instructions? -outlined the purpose of the survey or instrument? -layout non-cluttered, used white space? -easy to follow (no undue f l i p p i n g of pages)? -questions or items b r i e f , not too many crowded on a page? ...pertaining to content -questions or items too general? too s p e c i f i c to tap attitudes? -content biased? answers u n f a i r l y favoured one side of the issue? -would respondents give the information that was asked for 36 (for example, were the questions too embarrassing)? -wording simple enough to understand? -specialized terms avoided? -questions not ambiguous? -wording not objectionable to respondents? -questions in d i r e c t or i n d i r e c t form appropriately? ...pertaining to responses -responses easy to record (check off or c i r c l e choice)? -ample room to record responses? -responses could be personal or impersonal according to preference of respondent? The panel advised a t r i a l of the instrument with a small group of patients to assess the a c c e p t a b i l i t y of the layout and content to potential respondents, to provide feedback on wording and ease of comprehension and to estimate the time required to complete the instrument. This stemmed from the d i f f i c u l t y the panel members had in addressing the points in the above l i s t because they f e l t they were not potential respondents and t h e i r understanding and f a m i l i a r i t y with oncology and n u t r i t i o n , and the instrument i t s e l f , would a l t e r t h e i r views about the appropriateness and ease of use of the instrument. Four patients pretested the instrument. Minor changes in wording were suggested but layout, content and response options were acceptable. Each of the t r i a l participants required approximately ten minutes to complete the instrument. 37 Instrument P i l o t Testing  Selection of Respondents Respondents for p i l o t testing were selected just as those in the response formulation group were; through medical record screening for n u t r i t i o n notes, consultation with a nurse, by respondents meeting the c r i t e r i a for inclusion and respondents replying p o s i t i v e l y to the screening question. Data C o l l e c t i o n and Recording A l l respondents were asked to complete the instrument twice in order to determine the r e l i a b i l i t y of the statements in the Li k e r t scale item (item 6). Respondents were to complete the f i r s t copy while at the c l i n i c or sometime that same day at home and to complete the second copy in one week. Respondents were supplied with postage paid return envelopes. When a respondent agreed to complete the instrument, his/her medical record was reviewed for information on diagnosis, treatment received, reason for r e f e r r a l to a d i e t i t i a n , dietary changes suggested and any other conditions requiring dietary modification. Data Processing and Analysis Responses to the instrument items were tabulated using the S t a t i s t i c a l Package for Social Sciences - Extended Version, 1990. Frequency d i s t r i b u t i o n and percentage figures were calculated for responses to the c i r c l e choice questions, select from a l i s t of responses and L i k e r t scale responses. Spearman co r r e l a t i o n c o e f f i c i e n t s were calculated for the/ Li k e r t scale statements. The corr e l a t i o n of the two sets of responses ( i n i t i a l and after one week returns) was a test of 38 r e l i a b i l i t y t h a t respondents would answer s i m i l a r l y on su c c e s s i v e t r i a l s of the instrument. Information from the medical r e c o r d was compared to respondents' r e p o r t s of d i e t a r y changes they were to have made and any changes a c t u a l l y made i n order to assess f o r d i e t a r y change. In a d d i t i o n to a n a l y z i n g responses f o r a l l respondents as one group, data were grouped i n two ways; a c c o r d i n g to re p o r t e d d i e t a r y change r e l a t i v e to the d i e t i t i a n ' s i n t e n t (had made changes, had not made changes, u n c l e a r whether or not change had been made) and; ac c o r d i n g to the focus of n u t r i t i o n i n t e r v e n t i o n at the time the p a t i e n t had t a l k e d with a d i e t i t i a n ( f o r p a l l i a t i v e or acute symptom management or f o r r e h a b i l i t a t i v e purposes post treatment). The responses of the symptom management group and the r e h a b i l i t a t i o n group were analyzed u s i n g Chi square d i s t r i b u t i o n s to determine i f the apparent d i f f e r e n c e s between the responses of the two groups were s t a t i s t i c a l l y s i g n i f i c a n t . Ease of a d m i n i s t e r i n g the instrument and ease of data t a b u l a t i o n and i n t e r p r e t a t i o n were c o n s i d e r e d throughout the p i l o t t e s t . S i m p l i c i t y of instrument use and data a n a l y s i s were necessary to encourage d i e t i t i a n / n u t r i t i o n i s t s to use the instrument f o r program assessment and e v a l u a t i o n . The ra t e of r e t u r n and completeness of r e t u r n s were a l s o assessed. Assessment of Progress Made i n Instrument Development The f i n a l expert panel meeting was to review the r e s u l t s of the p i l o t t e s t and to assess t h e i r u s e f u l n e s s i n pl a n n i n g and e v a l u a t i n g n u t r i t i o n education s e r v i c e s . The d i s c u s s i o n focused on the worth of the instrument i n y i e l d i n g i n f o r m a t i o n 39 upon which to base decisions about n u t r i t i o n education practice (timing, format and focus of interv ention), p a r t i c u l a r l y for defined c l i e n t groups. When responses to a question or statement could not be c l e a r l y explained, or where there were d i f f e r i n g interpretations of responses, the panel reassessed the question or statement and by consensus decided to change the wording, or to reposition, expand or delete the item. The panel discussed future applications of the instrument. These included measuring the effectiveness of n u t r i t i o n education to respond to challenges from health care administrators that d i e t i t i a n s demonstrate e f f i c a c y of n u t r i t i o n intervention, and to improve the outcome of c l i n i c a l n u t r i t i o n education intervention by planning educational approaches that are based on patients' reported preferences and benefits. The l i m i t a t i o n s of t h i s study are that while the instrument was developed to be generic in nature, the results and recommendations stemming from the p i l o t test apply only to adult ambulatory oncology patients, and are not d i r e c t l y generalizable to other patient groups. In order to draw conclusions about the impact of n u t r i t i o n education in patients with d i f f e r e n t diet related diseases, or p a r t i c u l a r oncologic diagnoses, the instrument would have to be administered to these groups. Limitations 40 CHAPTER FOUR: FINDINGS AND DISCUSSION Findings This section contains the findings from each stage of instrument development and p i l o t testing. Instrument Development Development of the instrument consisted of generating appropriate questions and statements that would address key issues in n u t r i t i o n education for diet related diseases and formulating a range of responses that would accommodate the response options required for respondents to complete the instrument. Key Informant Interviews: VAE Adaptation and Question  Formulation. Tape recording of responses allowed the researcher and key informants to informally discuss the questions. Informants often provided answers to most of the questions on the interview schedule by answering the f i r s t question. This question, "Why did you see a d i e t i t i a n ? " , prompted a report of symptoms associated with the cancer, d e t a i l s of treatment, what dietary advice had been received, what dietary changes had been made, how easy or d i f f i c u l t the changes were, t i p s that informants had for others in th e i r s i t u a t i o n , and so forth. This eager reporting of information demonstrated the usefulness of locating key informants to gather information on p a t i e n t s / c l i e n t s ' views of a service. Analysis of the audiotapes of the key informant interviews resulted in adaptation of the Value-Added Ambulatory Encounter (VAE) framework that r e f l e c t e d patients' thoughts about 41 n u t r i t i o n education. The VAE was adapted as some of the categories outlined by Bopp, such as convenience of location, were not applicable to n u t r i t i o n education. Adaptation of the framework was done by grouping responses according to the VAE components. A grid was constructed with VAE items l i s t e d in the l e f t hand column as headings for each row. Responses from each informant were recorded across the page, one column for each respondent. Where responses were not addressed by a VAE item, a new heading for a row was made. Those items mentioned by at least two of the five informants were retained for the Value of Nutrition Education (VNE) framework. This explains why some of the VAE items, such as time spent waiting for appointments and location convenience do not exis t in the VNE (informants did not mention these in re l a t i o n to t h e i r interaction with a d i e t i t i a n ) . The revised VAE, the Value of Nutritio n Education (VNE), i s found in Table 1. De f i n i t i o n of terms; Value of n u t r i t i o n education (VNE). The terms relevant to the VNE are defined below: N u t r i t i o n a l goal achievements physical goal of n u t r i t i o n intervention achieved, as measured by r e l i e f of symptoms, restoration of function, or improvement in n u t r i t i o n a l assessment parameter (such as anthropometric, laboratory or dietary intake data). Attention/individualized cares n u t r i t i o n a l counselling perceived as being t a i l o r e d to patient's special needs. Understanding/empathys d i e t i t i a n understands patient's special needs. Table 1 Value of nutrition education (VNE) - patients' perspective Interpersonal Improved psychological physical need Reduction of well-being fulfilment uncertainty Control Accessibility Nutritional goal achievement Attention/ individual-ized care Dietitian integrity/ competence/ trust Interaction/ partnership Availability for consultation -relief of symptoms or; Empathy/ -restore understanding function or; -improvement Support in nutritional assessment Emotional parameter relief Reassurance Achievable -dietary dietary change change appropriate for condition Outcome perceived as achievable Supports encouragement and assistance provided by the d i e t i t i a n . Integrity/competence/trusts confidence in the d i e t i t i a n as a credible source of information and advice. Outcome perceived as achievable: patient understands plan for n u t r i t i o n a l care, dietary changes to be made, his/her role in carrying out the plan; patient feels changes to be made are possible. Emotional r e l i e f : decreased anxiety, worry or fear of eating (related to appropriateness of food choices for the condition or fear of symptom exacerbation brought on by consumption of inappropriate foods). 43 Reassurances d i e t a r y change(s) to be made are p e r c e i v e d as ap p r o p r i a t e f o r the p a t i e n t ' s c o n d i t i o n / s i t u a t i o n . I n t e r a c t i o n / p a r t n e r s h i p s agreement between the p a t i e n t and d i e t i t i a n i n i d e n t i f y i n g n u t r i t i o n a l needs and go a l s . A c h i e v a b l e d i e t a r y changes p o s i t i v e experience at home i n making food s e l e c t i o n s t h a t match n u t r i t i o n a l g o a l s . A v a i l a b i l i t y $ by telephone or at the c l i n i c . F o l l o w i n g the development of the VNE framework, the questi o n s t h a t had been asked of the key informants were reviewed and r e v i s e d to ensure t h a t each p o i n t of the framework was addressed. The VNE r e l a t e d questions became the i n t e r v i e w schedule f o r the next set of i n t e r v i e w s t h a t were conducted to o b t a i n a range of responses f o r each of the questions ( i n t e r v i e w schedule f o l l o w s ) . Instrument Formulation. The audiotapes were processed by l i s t i n g responses to each i n t e r v i e w q u e s t i o n on a separate page. S i m i l a r i t i e s i n responses were c o l l e c t e d under a common term or phrase. Responses expressed by fou r or more of the nine respondents were i n c l u d e d i n the s e l f a d ministered instrument. A n a l y s i s of the i n t e r v i e w tapes r e s u l t e d i n seven q u e s t i o n s , decreased from 15. S i m i l a r i t i e s i n responses to some i n t e r v i e w questions r e s u l t e d i n u n i t i n g two or three que s t i o n s t h a t were aimed at a p a r t i c u l a r i s s u e . For example, the f i r s t two questions e l i c i t e d responses about the reasons f o r seeing a d i e t i t i a n so the qu e s t i o n became, "Why d i d you see a d i e t i t i a n at the B.C. Cancer Agency?", along with a 44 Response Formulation Interview Schedule 1. Why did you see a d i e t i t i a n ? 2. Did you hope to get something out of seeing a d i e t i t i a n ? If so what? 3. How do you see n u t r i t i o n related to your condition? 4. What advice did you get? 5. What changes were you to make? 6. What changes did you make? Did your eating behaviour change? 7. When you were at home, were these changes e a s i l y accomplished? By what means; by yourself or caregivers? 8. How did these changes a f f e c t your health? 9. Did making changes in your diet r e s u l t in any change in your symptoms/condition? What happened? 10. How were the n u t r i t i o n a l goals arrived at? 11. Were the changes you were to make appropriate for you? 12. How many times have you seen the d i e t i t i a n ? If more than once, how did t h i s come about? If you didn't see a d i e t i t i a n again, why not? Were you able to see a d i e t i t i a n when you wanted to? 13. Besides food related information, did you get anything else out of seeing a d i e t i t i a n ? Explain. 14. Have you any other comments about your meeting with the d i e t i t i a n ? 15. Have you received n u t r i t i o n a l advice from elsewhere? How do you compare the advice you received from the d i e t i t i a n with that you received from elsewhere? 4 5 c h e c k l i s t of p o s s i b l e answers based on the responses t h a t were obtained from the i n t e r v i e w s . For the questions about d i e t a r y advice r e c e i v e d and changes made, the range of responses was so broad t h a t they could not be c a t e g o r i z e d c o n c i s e l y . In these cases w r i t t e n t e x t responses were r e q u i r e d . Some questions were converted i n t o statements to which—a respondent would i n d i c a t e how much he/she agreed or disagr^ee^with the statement made. Vario u s d r a f t s of the instrument were w r i t t e n with d i f f e r e n t formats f o r responses ( c i r c l e c h o i c e , m u l t i p l e c h o i c e , w r i t t e n response). The expert panel agreed on the format and l a y o u t of the p i l o t t e s t instrument (Appendix C). The l e s s t h r e a t e n i n g questions (yes/no responses) were p l a c e d on the f i r s t page to encourage respondents to proceed f u r t h e r i n t o the body of the instrument. The questions on the second page r e q u i r e d respondents to r e c a l l what they had been advised to change i n t h e i r d i e t s and to r e p o r t on t h e i r d i e t a r y behaviour s i n c e t a l k i n g with the d i e t i t i a n . The d i e t a r y s e l f r e p o r t questions were p l a c e d before the statements t h a t respondents were r e q u i r e d to agree or disagree with. T h i s allowed respondents to r e c a l l t h e i r s i t u a t i o n and any d i e t a r y changes they had made, before answering the p e r s o n a l a t t i t u d e statements about t h e i r c o n t a c t with a d i e t i t i a n and the n u t r i t i o n i n f o r m a t i o n r e c e i v e d . A L i k e r t s c a l e was used f o r the p e r s o n a l a t t i t u d e statements. T h i s was done to minimize the time r e q u i r e d to complete the instrument and to provide an o p p o r t u n i t y f o r respondents to r e v e a l any negative f e e l i n g s they had toward n u t r i t i o n e d ucation. The L i k e r t s c a l e was a l s o used to s i m p l i f y t a b u l a t i o n of r e s u l t s . A t r i a l of the 46 instrument with four patients further refined the wording, but major changes in content and layout were not required. Instrument P i l o t Test Rate of Return. Of the 39 instruments d i s t r i b u t e d , 33 were returned (85%). Of the 33, 28 were usable (72%). The fiv e unusable returns had not been f u l l y completed as respondents had not answered the L i k e r t scale statements. Twenty respondents returned two copies of the instrument as requested. Of these, eighteen were usable (46%). Various tumour s i t e s were represented including head and neck, lung, g a s t r o i n t e s t i n a l , breast, and gynaecology s i t e s and lymphoma. I t was important to have a mix of tumour s i t e s to prevent conducting an analysis of the educational a b i l i t i e s of a p a r t i c u l a r d i e t i t i a n covering a p a r t i c u l a r tumour s i t e . V a l i d i t y . This study was undertaken to develop an instrument to assess the effectiveness of n u t r i t i o n education practice. The panel's c r i t i c a l review of the VNE conceptual framework, the VNE related interview schedule, the progress made in instrument development, and the panel's assessment of the usefulness of results in practice served to validate the instrument. The instrument was considered a v a l i d measure of e f f e c t i v e practice because i t r e f l e c t e d the panel's c o l l e c t i v e experience as health professionals and the panel considered i t to be an instrument they would find useful in t h e i r own work settings to evaluate the n u t r i t i o n education services they were providing. R e l i a b i l i t y . Spearman cor r e l a t i o n c o e f f i c i e n t s for i n i t i a l and after one week returns r e l i a b i l i t y (Table 2) were 2 p o s i t i v e l y correlated. R values are the proportion of the variance in the repeat instrument that i s predictable from the 2 f i r s t return. Based on the R values, respondents would respond s i m i l a r l y on subsequent returns. The cut off point for R values was set at .40. The t e s t - r e t e s t c o r r e l a t i o n for item 6 statement v i , "After talking with a d i e t i t i a n , eating was easier", was nonsignificant indicating that i t was not a r e l i a b l e measure of respondent perceptions about ease of eating. As w i l l be discussed, t h i s statement was changed in the post p i l o t test revision of the instrument. The test-retest c o r r e l a t i o n for item 6 statement x i i , "Anyone with my condition should talk with a d i e t i t i a n " , was marginally within the cut off point. The item was retained as the expert panel considered the responses to t h i s item a good indicator of patients' acceptance of n u t r i t i o n information and advice. Findings from the P i l o t Test - A l l Respondents. The results of the p i l o t test revealed respondent s a t i s f a c t i o n with n u t r i t i o n education and interaction with a d i e t i t i a n at the B.C.Cancer Agency (raw data i s contained in Appendix D). A l l respondents reported that they were able to see a d i e t i t i a n when they wanted to (100%) and 94.7% reported that follow up contact with a d i e t i t i a n was useful (Table 3). Reasons for talking with a d i e t i t i a n were to get advice on symptom management (71.4%), for general n u t r i t i o n advice (60.7%), for reassurance that the respondent was eating properly (53.5%), and because the respondent was recommended to see a d i e t i t i a n by someone else (21.4%). This could have 48 Table 2 Spearman Correlation Coefficients and Proportion of Predictable Variance  for Initial and After One Week Returns for Likert Response Statements in Item Six of Nutrition Education Evaluation Instrument Item Sig i . the dietitian provided useful information i i . the dietitian knew what she was talking about i i i . the advice I received was suited to my special needs iv. I was less anxious about my condition after talking with the dietitian v. after talking with the dietitian, planning and preparing meals was easier ,6578 ,6630 ,5510 ,7195 .7371 .43 ,44 ,30 ,52 .54 .002 .002 .011 .001 .001 vi. after talking with the dietitian, .2803 .08 .138 eating was easier v i i . there was no benefit to .8377 .70 <.001 talking with the dietitian v i i i . after talking with the dietitian .8125 .66 <.001 I felt more in control of my condition ix. after changing my diet .6343 .40 .004 my symptom(s) improved x. the dietitian provided .7871 .62 <.001 support and encouragement xi. the dietitian cared about me .8230 .68 <.001 x i i . anyone with my condition should .4049 .16 .053 talk with a dietitian x i i i . i t was upsetting to talk with the dietitian ,5333 .28 .02 49 Table 3 Results from Pilot Test for Al l Respondents and Symptom  Management and Rehabilitation Groups Item All Respondents (n=28) Symptom Management (n-16) Rehabilitation (n=10) Yes No Yes No Yes No 1. Were you able to see the dietitian when you wanted to? 28 0 15(i) 0 10 0 2a. Did you talk with the dietitian more than once? 19 9 14 2 3 7 2b. If yes, was the 18 1 13 1 3 0 follow up contact with the dietitian useful? i) does not total n due to missing data been a r e f e r r a l from a health professional or a suggestion from a friend or r e l a t i v e . These percentages t o t a l more than 100% as respondents selected more than one response. None of the respondents selected the "I am not sure" option to the question of why they had (talked with a d i e t i t i a n . This could have indicated that respondents could i d e n t i f y what they had talked to the d i e t i t i a n about and that they had completed the instrument based on re c o l l e c t i o n s of t h e i r interaction with the d i e t i t i a n , rather than f a b r i c a t i n g responses that they believed the researcher and the B.C. Cancer Agency d i e t i t i a n s 50 would l i k e to hear. The opposite may also have been true, that respondents did not know why they had talked with a d i e t i t i a n and so they randomly chose one of the responses or a l l of the response options except for the "I am not sure" and "other" options. The completeness of responses to other questions and statements indicated that respondents had recalled t h e i r interaction with a d i e t i t i a n when completing the instrument. This meant that the range of responses was adequate to cover most of the reasons respondents had for talking with a d i e t i t i a n . Respondents were to indicate how much they agreed or disagreed with the L i k e r t response statements in item 6. These statements were planned to c o l l e c t respondent feedback about the p a t i e n t / d i e t i t i a n interaction and the n u t r i t i o n advice received, any improvements in respondents' a b i l i t i e s to eat after making dietary changes, any physical effects associated with dietary change, and any psychosocial influences of n u t r i t i o n education. Respondents viewed contact with a d i e t i t i a n favourably (Table 4). A l l respondents (100%) agreed that the d i e t i t i a n knew what she/he was talking about, 95% of respondents agreed that the d i e t i t i a n provided useful information, and 96.5% of respondents agreed that the advice they had received was suited to t h e i r s p e c i f i c needs. Most respondents (79%) agreed that the d i e t i t i a n provided support and encouragement and f e l t that the d i e t i t i a n cared about them (89%). None of the respondents disagreed with any of these statements. Meal planning and preparation as a result of talking with a d i e t i t i a n was considered easier by 68% of respondents and 11% of respondents disagreed that meal planning and preparation Table 4 Grouped Likert Scale Responses (in percentages) to Item Six  Statements of Nutrition Education Evaluation Instrument - A l l Respondents (n=28) Grouped Likert Scores (%] Statement <3 3 >3 NA i . the dietitian provided 0 7.1 93 0 useful information i i . the dietitian knew what 0 0 100 0 she was talking about i i i . the advice I received was 0 3.5 96.5 0 suited to my special needs iv. I was less anxious about 0 25 71.5 3.5 my condition after talking with the dietitian v. after talking with the 11 18 68 0 dietitian, planning and preparing meals was easier vi. after talking with the 11 36 43 3.5 dietitian, eating was easier v i i . there was no benefit to 68 11 14 3.5 talking with the dietitian v i i i . after talking with the 3.5 21 68 7 dietitian I felt more in control of my condition ix. after changing my diet my 7 32 32 25 symptom(s) improved x. the dietitian provided 0 21 79 0 support and encouragement xi. the dietitian cared about me 0 11 89 0 x i i . anyone with my condition 0 11 89 0 should talk with a dietitian x i i i . i t was upsetting to talk 82 11 0 3.5 with the dietitian 52 was e a s i e r . F o r t y - t h r e e p e r c e n t o f r e s p o n d e n t s c o n s i d e r e d e a t i n g t o b e e a s i e r a f t e r t a l k i n g w i t h a d i e t i t i a n . E l e v e n p e r c e n t d i s a g r e e d t h a t e a t i n g was e a s i e r a n d 3 6 % n e i t h e r a g r e e d n o r d i s a g r e e d t h a t e a t i n g was e a s i e r . T h e r e l a t i v e l y l a r g e p r o p o r t i o n o f r e s p o n d e n t s i n t h i s l a t t e r g r o u p may r e f l e c t t h e c o m p l e x i t y o f t h e t e r m " e a t i n g " a n d t h e v a r i o u s i n t e r p r e t a t i o n s r e s p o n d e n t s may h a v e h a d f o r t h e t e r m w h i c h may b e t h e r e a s o n t h a t t h i s s t a t e m e n t was u n r e l i a b l e . T h e s t a t e m e n t h a d b e e n i n t e n d e d t o g a t h e r i n f o r m a t i o n a b o u t r e s p o n d e n t s ' p h y s i c a l a b i l i t y t o e a t , b u t may h a v e a l s o b e e n i n t e r p r e t e d a s k n o w i n g w h a t t o e a t o r p l a n n i n g m e a l s . B e c a u s e o f t h e c o n f u s i o n a b o u t t h e t e r m a n d b e c a u s e t h i s s t a t e m e n t h a d a n o n s i g n i f i c a n t S p e a r m a n c o r r e l a t i o n c o e f f i c i e n t , i t was e x p a n d e d i n t o a n u m b e r o f s t a t e m e n t s i n t h e r e v i s e d i n s t r u m e n t t o i n c o r p o r a t e a l l o f t h e s e i n t e r p r e t a t i o n s . T h i r t y - t w o p e r c e n t o f r e s p o n d e n t s a g r e e d t h a t t h e i r s y m p t o m s h a d i m p r o v e d a f t e r c h a n g i n g t h e i r d i e t s a n d 7% o f r e s p o n d e n t s d i s a g r e e d t h a t t h e i r s y m p t o m s h a d i m p r o v e d . T h e r e m a i n i n g 5 7 % o f r e s p o n d e n t s c h o s e t h e n e i t h e r a g r e e n o r d i s a g r e e o p t i o n o r t h e n o t a p p l i c a b l e o p t i o n . T h e e x p e r t p a n e l c o n s i d e r e d i t p o s i t i v e t h a t 3 2 % o f r e s p o n d e n t s f e l t t h e y h a d e x p e r i e n c e d s y m p t o m i m p r o v e m e n t g i v e n t h e e x t r e m e s i d e e f f e c t s o f c a n c e r a n d i t s t r e a t m e n t . T h o s e who n e i t h e r a g r e e d n o r d i s a g r e e d w i t h t h e s t a t e m e n t ( 3 2 % ) may h a v e b e e n r e s p o n d i n g f r o m t h e p e r s p e c t i v e t h a t b e c a u s e t h e y h a d n o t e x p e r i e n c e d a c h a n g e i n s y m p t o m s , s y m p t o m i m p r o v e m e n t c o u l d n o t h a v e b e e n d i e t r e l a t e d . T h e 2 5 % o f r e s p o n d e n t s who c o n s i d e r e d t h i s s t a t e m e n t n o t a p p l i c a b l e t o t h e i r s i t u a t i o n may h a v e b e e n i n d i c a t i n g t h a t t h e y d i d n o t t h i n k t h e y h a d s y m p t o m s , o r t h e y d i d n o t think that the symptoms they had were treatable by dietary means. A majority of respondents (71.5%) agreed that they were less anxious about t h e i r condition after talking with the d i e t i t i a n , 68% agreed that they f e l t more in control of t h e i r condition af t e r talking with the d i e t i t i a n and 89% of respondents agreed that anyone with th e i r condition should talk with a d i e t i t i a n . Most respondents (82%) disagreed with the statement that i t was upsetting to talk with a d i e t i t i a n and 68% disagreed that there was no benefit to talking with a d i e t i t i a n . These data indicate that respondents experienced psychosocial benefits from talking with a d i e t i t i a n and that anxiety reduction and personal empowerment were important outcomes of contact with a d i e t i t i a n . Anxiety reduction relates to reassurance about s u i t a b i l i t y of food selection e s p e c i a l l y when patients are unaware that the side e f f e c t s they have been experiencing are common with t h e i r cancer diagnosis and treatment. A sense of control over personal n u t r i t i o n care i s important when the medical regime i s complicated and other aspects of medical care are planned and coordinated by members of the medical team. Findings about Dietary Change. The coding of reported dietary change r e l a t i v e to the d i e t i t i a n ' s intent was meant to produce a numeric measure of dietary change (percentage of respondents who had successfully implemented t h e i r personal n u t r i t i o n care plan) following n u t r i t i o n education and to relate dietary change to respondents' informational and educational approach preferences and needs. Data were arranged into two groups: where reported change(s) in diet 54 were appropriate for the n u t r i t i o n advice received (n=22) and where change in diet was unknown (n=6). The comparison of these groups was an attempt to relate change in dietary behaviour to what respondents reported about t h e i r contact with a d i e t i t i a n and the n u t r i t i o n information they had received and to use t h i s information to plan approaches to n u t r i t i o n education that would improve patients' a b i l i t i e s to make dietary changes. The respondents (n=2) whose reported dietary changes were incorrect r e l a t i v e to the advice given by the d i e t i t i a n were excluded from data analysis because t h e i r responses indicated misunderstanding of what was being asked in the instrument. Their responses referred to contact with outpatient d i e t i t i a n s at least one decade before for weight reduction counselling. This yielded the t o t a l of 28 usable returns for data analysis. Coding of responses revealed that 78.6% (n=22) of respondents made changes i n th e i r diets according to the d i e t i t i a n s ' intent. For 21.4% of respondents (n=6), any change in diet or eating behaviour was unknown as they had not responded adequately to permit a decision to be made. The instruments from t h i s group were reexamined to assess why the information about t h e i r dietary behaviour was not apparent when t h e i r returns were f i r s t analyzed and i f written comments or answers to other items revealed any indication of change in dietary behaviour. A l l of the respondents in t h i s group (n=6) selected the "no changes made" option to question 5 (what changes, i f any, did you make in your d i e t ? ) . This indicated that they had not perceived having made changes, yet t h e i r comments and responses to other items revealed some changes had been made. 55 This could be taken as a positive finding; that appropriate dietary changes were made yet were not perceived as a change from normal eating a c t i v i t y . Nutrition education may have been well t a i l o r e d to respondent needs such that changes in diet were e a s i l y made without a perception of change or d i f f i c u l t y i n making the change. With the 78.6% where appropriate dietary change was reported and another 21.4% who had changed, but had not perceived a change, the t o t a l dietary behaviour change after talking with a d i e t i t i a n was 100%. The finding that 100% of respondents had reported appropriate dietary change aroused suspicion about the usefulness of the dietary change questions i n providing an accurate representation of behaviour change. Panel members discussed these new findings and questioned the s u i t a b i l i t y of including questions where the responses had to be interpreted by an auditor in order to assign a code for dietary change. Perhaps the p i l o t test respondents had changed t h e i r behaviour in a small way, but the second guessing of responses that was required to determine whether or not behaviour change had occurred introduced too large a source of error. As well, perhaps only those respondents who had made dietary changes were the individuals who chose to respond. By retaining the dietary change questions there would be the potential for misuse of the results in d i e t e t i c practice when assessing the effectiveness of n u t r i t i o n education. This approach to quantifying behaviour change was abandoned, and questions 4 and 5, "What changes in your diet, i f any, did the d i e t i t i a n suggest you make?", and "What changes in your diet, i f any, did you actually make after talking with the d i e t i t i a n ? " , were deleted, as there were too many sources of 56 error and potential for misinterpretation in deciding what code to assign to behaviour change. Instead, questions or items were needed that would reveal respondents' perceptions of whether or not behaviour change had occurred that were not dependent on an auditor's interpretation. These questions had to correspond with the VNE about respondents' reassurance that suggested dietary changes were perceived as appropriate for the individual's condition, changes were perceived as attainable at the time of counselling and were achievable when t r i e d at home. The option of retaining question 5, "What changes in your diet, i f any, did the d i e t i t i a n suggest you make?" was discussed, to encourage respondents to consider what changes they had made in order to more readily respond to the a t t i t u d i n a l statements. I t was decided to delete t h i s question as future users of the instrument may be tempted to use the response data from the question as a measure of effectiveness of intervention. To accommodate the need for items that would provide information about dietary changes, additional statements were added to the L i k e r t scale item about dietary change. These statements addressed whether or not dietary changes were made, i f the respondent f e l t that dietary changes were not required as his/her diet was already appropriate and when changes were not made, what were the reasons or barrie r s to change. The o r i g i n a l intent of coding and categorizing responses r e l a t i v e to behaviour change was to i d e n t i f y the needs and preferences for n u t r i t i o n education of those who had successfully adopted new dietary behaviour and to use t h i s information to plan educational approaches that would encourage dietary change. Conversely, i t had been planned to 57 a n a l y z e the r e s p o n s e s of t h o s e who had not changed t h e i r b e h a v i o u r t o determine why change had not o c c u r r e d and t o l e a r n how d i e t i t i a n s c o u l d reduce b a r r i e r s t o change t h r o u g h c o u n s e l l i n g . Because the measurement of b e h a v i o u r change t h a t had been p l a n n e d f o r t h i s s t u d y was abandoned, i t was not p o s s i b l e t o c o n s i d e r e d u c a t i o n a l s t r a t e g i e s t o encourage a d o p t i o n of new d i e t a r y b e h a v i o u r s based on t h i s a n a l y s i s . F i n d i n g s about Symptom M a n a g e m e n t / R e h a b i l i t a t i o n . The d a t a from a l l r e s p o n d e n t s p r o v i d e d an i n d i c a t i o n of p e r c e p t i o n s of o n c o l o g y p a t i e n t s about t h e i r n u t r i t i o n e d u c a t i o n e x p e r i e n c e s (raw d a t a i s c o n t a i n e d i n Appendices E and F ) . I n an attempt t o determine i f t h e r e were any s p e c i f i c p r e f e r e n c e s of subgroups of r e s p o n d e n t s f o r i n f o r m a t i o n o r method of i n f o r m a t i o n d e l i v e r y , the d a t a from a l l r e s p o n d e n t s were grouped i n v a r i o u s ways. I f subgroup p r e f e r e n c e s c o u l d be i d e n t i f i e d , e d u c a t i o n approaches c o u l d be developed t o complement th e s e p r e f e r e n c e s w i t h the i n t e n t i o n of o p t i m i z i n g outcome of n u t r i t i o n i n t e r v e n t i o n . Data were d i v i d e d by tumour s i t e (head and neck, l u n g , b r e a s t , g y n a e cology and g a s t r o i n t e s t i n a l s i t e s ) and a c c o r d i n g t o the reason a d i e t i t i a n was c o n s u l t e d ( f o r acute or p a l l i a t i v e symptom management and f o r r e h a b i l i t a t i o n ) . There were inadequate respondent numbers t o o b t a i n p a t i e n t p r o f i l e s f o r each of the tumour s i t e s . Frequency d i s t r i b u t i o n r e s u l t s f o r the symptom management group and the r e h a b i l i t a t i o n group i n d i c a t e d some d i f f e r e n c e s i n p r e f e r e n c e s f o r and p e r c e i v e d b e n e f i t s from n u t r i t i o n e d u c a t i o n ( T a b l e s 5 and 6). C h i square d i s t r i b u t i o n s r e v e a l e d no s i g n i f i c a n t d i f f e r e n c e s between groups f o r responses t o the Table 5 Grouped Likert Scale Responses (in percentages) to Item Six  Statements of Nutrition Education Evaluation Instrument - Symptom  Management Group (n=16) Statement <3 Likert Scores >3 NA i . the dietitian provided useful information 0 i i . the dietitian knew what she was talking about 0 i i i . the advice I received was suited to my special needs 0 iv. I was less anxious about my condition after talking with the dietitian 6 v. after talking with the dietitian, planning and preparing meals was easier 6 vi. after talking with the dietitian, eating was easier 6 v i i . there was no benefit to talking with the dietitian 75 v i i i . after talking with the dietitian I felt more in control of my condition 0 ix. after changing my diet my symptom(s) improved 19 x. the dietitian provided support and encouragement 0 xi. the dietitian cared about me 0 x i i . anyone with my condition should talk with a dietitian 0 x i i i . i t was upsetting to talk with the dietitian 88 0 31 12.5 19 12.5 37.5 12.5 6 12 12.5 94 100 12.5 87.5 56 69 63 6 50 31 81 94 88 0 0 0 0 0 0 0 12.5 19 6 0 0 0 NBs Some distributions total less than 100% owing to missing data. 59 Table 6 Grouped Likert Scale Responses (in percentages) to Item Six Statements of Nutrition Education Evaluation Instrument - Rehabilitation Group (n=10) Likert Scores Statement i . the dietitian provided useful information i i . the dietitian knew what she was talking about i i i . the advice I received was suited to my special needs iv. I was less anxious about my condition after talking with the dietitian v. after talking with the dietitian, planning and preparing meals was easier vi. after talking with the dietitian, eating was easier v i i . there was no benefit to talking with the dietitian v i i i . after talking with the dietitian I felt more in control of my condition ix. after changing my diet my symptom(s) improved x. the dietitian provided support and encouragement xi. the dietitian cared about me x i i . anyone with my condition should talk with a dietitian x i i i . i t was upsetting to talk with the dietitian <3 3 >3 NA 0 10 90 0 0 0 100 0 0 0 90 10 0 10 90 0 20 30 40 10 20 30 20 20 70 10 20 0 0 20 70 10 0 10 40 50 0 30 70 0 0 20 80 0 0 0 90 10 80 0 0 10 NB: Some distributions total less than 100% owing to missing data. 60 L i k e r t scale statements. The lack of s t a t i s t i c a l significance could have been due to the small sample size or because respondents were sorted into the symptom management and r e h a b i l i t a t i o n groups retrospectively, based on the chart reviews that accompanied the recruitment of respondents into the study. This grouping may not have been consistent with respondents' frames of reference when completing the instrument. Another possible explanation for the lack of s t a t i s t i c a l significance between the responses of the two groups may be that for the frequency d i s t r i b u t i o n the agree (4) and strongly agree (5) options were collapsed into one group (greater than 3), as were the disagree (2) and strongly disagree (1) options (into less than 3). This produced values that indicated that respondents agreed with, disagreed with or were neutral to each statement. The Chi square calculations were derived from each respondents' answers to the statements in item 6 and not on the collapsed data. This difference i n the use of the raw data, compared to the grouped data, may account for the lack of s t a t i s t i c a l significance of the Chi square values. With a larger sample size and with respondents i d e n t i f y i n g the frame of reference (symptom management or r e h a b i l i t a t i o n ) they had adopted when completing the instrument, perhaps the differences between groups would have been 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 lack of s t a t i s t i c a l significance in t h i s study may not mean that there were no p r a c t i c a l differences between the responses of the symptom management and r e h a b i l i t a t i o n groups (Borg & G a l l , 1984). The differences in the frequency d i s t r i b u t i o n results between the two groups are of p r a c t i c a l use when planning educational programs or approaches for 61 patients in d i f f e r e n t stages of i l l n e s s or recovery. Both groups reported that they had been able to talk with the d i e t i t i a n when they wanted to. The symptom management group reported talking with the d i e t i t i a n more than once more than the r e h a b i l i t a t i o n group (87.5% and 30% respectively). Both groups reported that the follow up contact had been useful (81% and 100% respectively). A larger proportion of the symptom management group (87.5%) than the r e h a b i l i t a t i o n group (30%) reported that they had seen a d i e t i t i a n for advice on coping with symptoms. This i s consistent with respondents' medical records and reasons given for consulting a d i e t i t i a n (for management of acute symptoms or reactions to treatment) and relates to the finding that the symptom management respondents reported talking with a d i e t i t i a n more than once (for follow up and ongoing advice). Rehabilitation respondents had chronic symptoms that required n u t r i t i o n a l advice however, i t appears from these data that not a l l of the r e h a b i l i t a t i o n respondents recognized that the chronic af t e r e f f e c t s of cancer treatment they had been experiencing were p o t e n t i a l l y manageable by n u t r i t i o n a l means. Examples that f i t t h i s description would be individuals who received radiotherapy for head and neck cancer who experience chronic dry mouth or taste changes months and years after therapy, and individuals on long term hormonal manipulation for the management of breast cancer who experience continual (and unwanted) weight gain. Similar proportions of respondents in each group reported that they had seen the d i e t i t i a n for reassurance they were eating properly (56.2% and 60% respectively) and for general n u t r i t i o n advice (56.2% and 60% respectively). Members of both groups (18.7% of the 62 symptom management group and 30% of the r e h a b i l i t a t i o n group) reported that someone had recommended they see a d i e t i t i a n . Both groups agreed that the d i e t i t i a n provided useful information (94% and 90% respectively) and that the d i e t i t i a n knew what he/she was talking about (100% both groups). There was agreement that the advice received was suited to the respondents' special needs (87.5% and 90% respectively). Both groups disagreed with the statement that there was no benefit to talking with the d i e t i t i a n (75% and 70% for each group). Of the r e h a b i l i t a t i o n group, 20% agreed that there was no benefit in talking with a d i e t i t i a n . This could indicate that for some respondents there was no recognition that the chronic symptoms experienced for months and years aft e r treatment were related to cancer therapy therefore, there was no perception of benefit in talking with a d i e t i t i a n . I t could also be the case that there was permanent damage as a r e s u l t of treatment that would not improve despite n u t r i t i o n a l care. Respondents in t h i s s i t u a t i q n may not have thought there was a benefit to talking with a d i e t i t i a n . Both groups agreed that the d i e t i t i a n provided support and encouragement (81% for the symptom management group and 70% for the r e h a b i l i t a t i o n group). Respondents in both groups agreed that the d i e t i t i a n cared about them (94% and 80% respectively). There was agreement that anyone with a similar condition should talk with a d i e t i t i a n (88% and 90% respectively). Both groups disagreed with the statement that talking with the d i e t i t i a n was upsetting (88% and 80% disagreement). The statements where there seemed to be differences in the responses of the two groups were statement i v , "I was less anxious about my condition after talking with the d i e t i t i a n " , (56% agreement for the symptom management group and 90% agreement for the r e h a b i l i t a t i o n group); statement v, "after talking with the d i e t i t i a n , planning and preparing meals was easier", (69% and 40% agreement respectively); statement v i , "after t a l k i n g with the d i e t i t i a n , eating was easier", (63% and 20% agreement for each group); statement v i i i , "after talking with the d i e t i t i a n I f e l t more in control of my condition", (50% and 70% agreement for each group); and statement i x , "after changing my diet my symptoms improved", (19% of the symptom management group and 50% of the r e h a b i l i t a t i o n group considered t h i s statement to be not applicable). Interpretation of these results are useful to plan educational approaches that are compatible with respondents' reports of how they benefitted from n u t r i t i o n education and th e i r contact with a d i e t i t i a n . The symptom management group responses suggested that n u t r i t i o n education equipped these respondents with knowledge about making meal preparation easier. Since the statement about eating being easier was not s t a t i s t i c a l l y s i g n i f i c a n t , the apparent differences between the responses of the two groups were disregarded. The rewording of the instrument should produce clearer r e s u l t s . The symptom management group was divided between fee l i n g more in control of t h e i r condition after talking with a d i e t i t i a n (50%) and fee l i n g that the control statement was not applicable to them (50%). Although 87.5% responded that the reason for consulting a d i e t i t i a n was to get advice about coping with symptoms, only 31% of the symptom management group agreed that they had experienced symptom improvement after 64 changing t h e i r d i e t s . T h i s could i n d i c a t e t h a t the degree of i l l n e s s was not t r e a t a b l e by d i e t a r y means or t h a t some respondents had not made d i e t a r y changes hence, symptoms co u l d not improve. Respondents i n the symptom management group may not have c o n s i d e r e d symptoms to be manageable by d i e t , but r a t h e r a s i t u a t i o n to be t o l e r a t e d a f t e r cancer treatment. The expert panel c o n s i d e r e d the 31% agreement with the statement a p o s i t i v e f i n d i n g , owing to the d e v a s t a t i n g impact of cancer treatment on p h y s i c a l s t a t u s . T h i s would have been e s p e c i a l l y t r u e f o r members of the symptom management group who would have been r e c e i v i n g a c t i v e treatment around the time they had t a l k e d with a d i e t i t i a n . T h i s f i n d i n g r e i n f o r c e s Bopp's view (Bopp, 1989) t h a t p a t i e n t s need not improve p h y s i c a l l y to have b e n e f i t t e d from a medical encounter. That more respondents from the r e h a b i l i t a t i o n group d i d not agree with the statement about improved symptoms may i n d i c a t e t h a t the members of t h i s group d i d not have acute symptoms, thus they d i d not p e r c e i v e t h a t t h i s item was a p p l i c a b l e to them. Personal c o n t r o l and a n x i e t y r e d u c t i o n were not experienced by the symptom management group as much as by the r e h a b i l i t a t i o n group. I n d i v i d u a l s i n the symptom management group may have been l e s s i n v o l v e d i n p l a n n i n g t h e i r own n u t r i t i o n a l care than those i n the r e h a b i l i t a t i o n group because the acute nature of t h e i r symptoms would prevent a c t i v e p a r t i c i p a t i o n i n s e l f care. When t r a n s l a t i n g these r e s u l t s i n t o e d u c a t i o n a l approaches f o r those who are a c u t e l y i l l , d i e t i t i a n s should adopt a s h o r t term focus aimed at the d e t a i l s of meal p l a n n i n g f o r the next few meals or days i n order f o r the p a t i e n t to progress through the episode of acute i l l n e s s . Where acute or p a l l i a t i v e 65 symptom management is,the focus of n u t r i t i o n intervention, individuals would benefit from receiving step by step instructions and detailed outlines of what to eat at each meal or snack. Easy to follow, basic guidelines about the dietary changes to make, accompanied by a personalized eating plan and shopping hints ( i f required) would be useful in enabling the patient to make dietary changes. Once recovery occurs, follow up counselling should take place to deal with longer term approaches to n u t r i t i o n a l care. The focus of n u t r i t i o n education af t e r recovery would be more of a d i e t i t i a n / p a t i e n t partnership in planning for dietary change as patients would be better able to parti c i p a t e and to anticipate barriers to success. The r e h a b i l i t a t i o n group valued n u t r i t i o n education for anxiety reduction and personal control more than for symptom improvement. This conclusion stems from the findings that 50% of respondents in t h i s group selected the "not applicable" response option for the statement about ease of planning and preparing meals after talking with a d i e t i t i a n , and that 60% chose the not applicable response option to the statement about symptom control after changing t h e i r diets. Responses to the statement about fe e l i n g less anxious about t h e i r condition a f t e r talking with the d i e t i t i a n (90% agreement) and fee l i n g more in control of t h e i r condition after talking with the d i e t i t i a n (70% agreement) indicated that t h i s group f e l t empowered to manage t h e i r own health and conditions. The finding that r e h a b i l i t a t i o n respondents agreed with the personal control and anxiety reduction items i s important to consider when counselling those patients who are r e h a b i l i t a t i n g from intensive cancer therapy (during which 66 time they may have f e l t they had no control over procedures being done). Nutrition may be seen by those who have had to adhere to prescribed drug and/or radiotherapy protocols as important in establishing a sense of well-being by allowing choices about personal health management. An educational strategy for d i e t i t i a n s to employ with t h i s group would be to outline the individual's n u t r i t i o n a l requirements, including the recommended dietary changes, then guiding the decision making about food choices for a given meal or day. This approach would promote personal control in planning what, when and how much to eat. The goal of n u t r i t i o n intervention for the r e h a b i l i t a t i o n group would be long term compared to the symptom management group as complete recovery from the after e ffects of chemotherapy, radiotherapy or surgery often requires months and years. Regardless of the reason a d i e t i t i a n was consulted (symptom control or r e h a b i l i t a t i o n ) and the desired outcome of intervention, d i e t i t i a n s should be sensitive to the information needs of patients and address n u t r i t i o n education and support to those needs in order to optimize outcome. By interacting with patients and t h e i r caregivers, d i e t i t i a n s can i d e n t i f y patient needs for l e v e l of information required and the method of presentation (verbal, p r i n t , videotape and so on) that w i l l enhance learning and promote behaviour change. Instrument Refinement/Rewording. The panel reviewed and interpreted the p i l o t test r e s u l t s , then discussed the application of results to plan n u t r i t i o n education approaches, based on c l i e n t feedback, that would improve outcome of intervention. Based on the discussion of the use of the instrument and the a p p l i c a t i o n of r e s u l t s to plan n u t r i t i o n education approaches f o r a d e f i n e d t a r g e t group, the panel concluded t h a t the instrument would be a v a l u a b l e a d d i t i o n to d i e t e t i c p r a c t i c e because d i e t i t i a n / n u t r i t i o n i s t s have not p r e v i o u s l y had methods a v a i l a b l e to assess p r a c t i c e and to i d e n t i f y e f f e c t i v e approaches to n u t r i t i o n e d ucation. Refinements to the instrument, i n the form of rewording, r e p o s i t i o n i n g , expanding or d e l e t i n g q uestions and statements, were made to y i e l d responses t h a t would be c l e a r e r r e p r e s e n t a t i o n s of respondents' p e r c e p t i o n s . Appendix H co n t a i n s the r e v i s e d instrument. The wording f o r the statement about a n x i e t y r e d u c t i o n , "I was l e s s anxious about my c o n d i t i o n a f t e r t a l k i n g with the d i e t i t i a n " , was changed to be more p o s i t i v e . The pre v i o u s wording presumed t h a t a l l respondents f e l t some degree of a n x i e t y about e a t i n g or n u t r i t i o n . The reworded statement became, " A f t e r t a l k i n g with the d i e t i t i a n I f e l t b e t t e r e m o t i o n a l l y " . The q u e s t i o n s about respondents' r e c o l l e c t i o n s of the n u t r i t i o n i n f o r m a t i o n r e c e i v e d and the d i e t a r y changes they had made (questions 4 and 5 ) were d e l e t e d , as e x p l a i n e d above, because the dete r m i n a t i o n of behaviour change r e l i e d on an a u d i t o r ' s i n t e r p r e t a t i o n of responses. By r e l y i n g on the i n t e r p r e t a t i o n of an a u d i t o r , the r e s u l t s d i d not support the concepts i n the VNE t h a t the p a t i e n t f e l t the d i e t a r y changes he/she was to make were a p p r o p r i a t e and t h a t he/she was able to make the necessary changes. To o b t a i n respondents' p e r c e p t i o n s of change i n d i e t a r y behaviour a c c o r d i n g to the VNE, statements were added to the L i k e r t s c a l e item, " A f t e r t a l k i n g with the d i e t i t i a n I knew what to eat f o r my s p e c i a l needs"; " A f t e r t a l k i n g with the d i e t i t i a n I changed my d i e t " ; 68 "After t a l k i n g with the d i e t i t i a n I learned I did not need to change my diet as my intake was already suited to my needs", and; "After talking with the d i e t i t i a n I could not change my diet (followed by a l i s t of potential barriers to change)". This range of response options about dietary change stems from the p i l o t test finding that most patients did make some dietary changes, although minor in some cases, and that none of the respondents deliberately chose to disregard the d i e t i t i a n s ' advice. The response options in the revised instrument were intended to address the complexity of eating and the a c t i v i t i e s that precede physical consumption of food such as knowing what to eat, planning what to eat, and the purchasing and preparing of foods. The statement, "After talking with the d i e t i t i a n I knew what to eat for my special needs", was added to the instrument as the panel thought that t h i s was important information on which to base decisions about n u t r i t i o n education that would help to overcome ba r r i e r s to change. The reasoning was that i f respondents knew what to do, but were prevented from doing so because of s i t u a t i o n a l factors, the issue was not knowledge acq u i s i t i o n but the need for s o c i a l work or community service assistance to deal with the s i t u a t i o n a l d i f f i c u l t i e s that prevented dietary change. Responses to the revised statements w i l l a s s i s t future users of the instrument to glean s p e c i f i c information about barriers to dietary change. Barriers may take the form of inadequate funds for food, limited access to shopping, limited physical endurance to shop and/or cook, and poor kitchen f a c i l i t i e s . A l l of these impact on c l i e n t s ' a b i l i t i e s to make dietary changes. To promote dietary change, d i e t i t i a n s need to 69 consider c l i e n t s ' personal circumstances that may impose barriers to change and not only physical n u t r i t i o n a l needs. Discussion This section consists of a discussion of the results of the instrument p i l o t t e s t . Answering the Research Question and Subsidiary Questions The research question and subsidiary questions are addressed in t h i s section as well as p r a c t i c a l applications of the instrument to evaluate n u t r i t i o n education for diet related diseases. Worthiness of the Instrument to Improve Practice. The research question was, does an instrument, based on the Value-Added Ambulatory Encounter (VAE), and developed to evaluate n u t r i t i o n education in chronic diet related diseases, provide worthwhile information on which to base decisions about n u t r i t i o n education practice? The results of the p i l o t test and panel assessment indicate that the instrument would be a useful evaluation tool for n u t r i t i o n and d i e t e t i c s because the results are patient perceptions of what patients l i k e d or d i s l i k e d about t h e i r contact with a d i e t i t i a n , the n u t r i t i o n information and support they received, t h e i r a b i l i t y to make dietary changes after talking with a d i e t i t i a n and the influence of dietary change and contact with a d i e t i t i a n on t h e i r physical and psychological well-being. To date, measurements of patients' perceptions of how e f f e c t i v e they f e e l n u t r i t i o n education has been, or how they f e e l they have 70 benefitted from intervention, have not been used. The outcome measurement approach developed in t h i s study offers an alternate or complementary evaluation approach to the t r a d i t i o n a l measures of changes in morbidity or mortality following n u t r i t i o n intervention. Application of the findings for a target group would res u l t in n u t r i t i o n education content and delivery t a i l o r e d to what c l i e n t s ' reported they preferred and benefitted from, with the aim of f a c i l i t a t i n g and enhancing dietary change. The Value of Nutrition Education (VNE) based instrument can be applied to assess many d i f f e r e n t conditions, settings and various approaches to n u t r i t i o n education. Evaluation results can also be used to determine the most e f f e c t i v e n u t r i t i o n education approach(es) in order to make decisions about a l l o c a t i o n of resources. Nutri t i o n and quality of l i f e has been addressed in the l i t e r a t u r e and i s recognized in practice, but the association between the d i e t i t i a n / p a t i e n t interaction and quality of l i f e has not been established. The impact of n u t r i t i o n on quality of l i f e i s often measured by administering standard quality of l i f e scales following n u t r i t i o n intervention, but patient perceptions of the impact of dietary change on physical well-being and a b i l i t y to cope with one's condition have not been discussed ( L i t t l e & A l j a d i r , 1986). Evaluation results using the instrument developed and tested in t h i s study provide information about patients' perceptions of n u t r i t i o n education thus preventing d i e t i t i a n s (as investigators) from imposing t h e i r personal b e l i e f s about what n u t r i t i o n education approaches patients benefit from or what information or delivery method i s the most e f f e c t i v e . 71 The generic nature of the instrument means i t can be applied in d i f f e r e n t settings with a variety of patient groups depending on what and who the auditor wants to target. Some p o s s i b i l i t i e s for settings are ambulatory care c l i n i c s , hospital or family practice based outpatient c l i n i c s , follow up of patients who had received n u t r i t i o n education when discharged from an acute care hospital setting, and community based n u t r i t i o n education programs such as cardiac r e h a b i l i t a t i o n l i f e s t y l e classes. C l i n i c s and patient groups may be studied by disease (diabetes, cancer, AIDS), by diagnosis (Crohns' disease, esophageal cancer, food a l l e r g y ) , by medical specialty (gastroenterology, cardiology), or by treatment/procedure (colostomy, coronary artery bypass g r a f t ) . The instrument should not be used to assess the professional a b i l i t i e s of an ind i v i d u a l d i e t i t i a n , except i f that i n d i v i d u a l i s interested in s e l f appraisal in order to improve the services he/she i s providing to a defined patient group. The acceptable rate of return (72%) led to confidence in the use of the results to make decisions about practice. This was a reasonable rate of return (Wiersma, 1986), p a r t i c u l a r l y when respondents were given the opportunity to return the completed instrument by mail and t h i s may have resulted in some respondents forgetting to return the instrument. The high rate of f i r s t returns may r e f l e c t respondents' appreciation for being consulted about t h e i r opinions and the short time involvement required to complete the instrument. The comparatively lower rate of second returns (51%) may have been because respondents forgot about the evaluation instrument once they l e f t the c l i n i c , or f e l t there was no need to respond a second time as t h e i r responses would have been the same as the f i r s t return (they did not understand the importance of the second return to the o v e r a l l research project). Tabulation of responses was accomplished by grouping instrument returns according to respondents' c h a r a c t e r i s t i c s and ins e r t i n g responses into a simple spread sheet format. This can be done manually or by computer. The a b i l i t y to do a quick analysis of responses and the ready application of findings into practice add to the appeal of instrument. An i n d i v i d u a l d i e t i t i a n might use the instrument to assess his/her own approach to n u t r i t i o n education. An auditor might wish to study the influence of d i f f e r e n t i n s t r u c t i o n a l techniques or settings on patients' perceived a b i l i t i e s to make dietary changes. An example would be n u t r i t i o n education provided in an acute care hospital, compared to providing basic survival information at the time of hospital discharge with follow up group support or information sessions a few weeks after discharge. Administration of the instrument w i l l be simpler and require less time than i t took for p i l o t testing as auditors w i l l not have to review and record information from medical records to assess dietary change. Auditors w i l l have already defined the group they want to study so w i l l not have to seek information about diagnosis, treatment received, and n u t r i t i o n advice given. With the elimination of the written response questions about dietary change, s l i g h t l y less time w i l l be required for respondents to complete the instrument. Data analysis w i l l also take less time as respondents w i l l not need to be assigned into groups. The evaluation of the p i l o t test indicates that the instrument does provide worthwhile information on which to base decisions about n u t r i t i o n education practice. The approach of assessing patients' perspectives on the impact of nu t r i t i o n education on t h e i r a b i l i t i e s to make dietary changes and t h e i r physical and psychological well-being i s new in d i e t e t i c s . Results w i l l be useful to develop n u t r i t i o n education approaches that produce outcomes that r e f l e c t the role of n u t r i t i o n in the management of chronic diet related diseases. Addressing the Components of the Value of Nutriti o n  Education Framework. The f i r s t subsidiary question was, does the instrument address the components of the Value-Added Ambulatory Encounter (VAE) as adapted for n u t r i t i o n education; do the results of the p i l o t test y i e l d information about the impact of n u t r i t i o n on well-being, interpersonal need ful f i l m e n t , reduction of uncertainty, control and a c c e s s i b i l i t y ? Improved physical well-being in terms of r e l i e f of symptoms and restoration of function was addressed i n statement ix, "after changing my diet my symptoms improved", and the statement about planning and preparing meals. Users of the revised instrument w i l l be able to specify symptoms or functional d e f i c i t s that target groups of patients c h a r a c t e r i s t i c a l l y experience, hence the reason for rewording statement v i i i to read, "After changing my diet my improved." P i l o t test results provided information about interpersonal need fu l f i l m e n t , indicating that respondents f e l t the d i e t i t i a n provided advice suited to t h e i r special needs, was understanding, caring and supportive. Information about emotional r e l i e f was obtained from the results to statement i v , "I was less anxious about my condition after talking with the d i e t i t i a n " , and statement v i i i , "After talking with the d i e t i t i a n I f e l t more in control of my condition". Reduction of uncertainty was addressed in the statements about the d i e t i t i a n as a source of useful information, respondents reporting that they thought there was benefit in talking with a d i e t i t i a n and that others with a si m i l a r condition should talk with a d i e t i t i a n . The reassurance that dietary change was appropriate for respondents' conditions was apparent from the responses to the statements, "The information I received was suited to my special needs", and "The d i e t i t i a n knew what she was talking about". Information about n u t r i t i o n a l care outcome(s) being perceived as achievable was not forthcoming from the p i l o t test results so a statement was added to the revised instrument about knowing what to eat after talking with the d i e t i t i a n (statement'iv of the revised instrument, "After t a l k i n g with the d i e t i t i a n I knew what to eat for my special needs"). Control was addressed in the statement, "After talking with the d i e t i t i a n I f e l t more in control of my condition". Interaction and partnership were dealt with in the statement, "Anyone with my condition should t a l k with a d i e t i t i a n . " Further information about perceptions of control was obtained from the responses to the request for comments at the end of the instrument. Achievable dietary change i s addressed in the revised statements about dietary change, "After talking with the d i e t i t i a n I changed my d i e t " , "After talking with the d i e t i t i a n I learned I did not need to make changes in my diet" 75 and, "After talking with the d i e t i t i a n I could not make changes in my d i e t " . These revised statements were added because the previous statement about eating being easier a f t e r talking with a d i e t i t i a n was unclear. Responses to questions 1 and 2, "Were you able to see a d i e t i t i a n when you wanted to?" and, "Did you talk with a d i e t i t i a n more than once?" addressed a c c e s s i b i l i t y and d i e t i t i a n a v a i l a b i l i t y for consultation. Assessing Dietary Change. The second subsidiary question was, do the results of the p i l o t test of the instrument provide information about the impact of n u t r i t i o n education on change in eating behaviour? Eating behaviour i s complex and i s influenced by physical, psychosocial and contextual factors. Determining what changes take place after consulting a d i e t i t i a n requires detailed information about the quantity and quality of foods consumed and s i t u a t i o n a l considerations. The results from the p i l o t test were not useful in deciding whether or not changes had occurred, what the changes were and to what extent the d i e t i t i a n s ' advice was carried out. The panel concluded that because the assessment of dietary change required interpretation and integration of two sets of information, (respondents' reported dietary change r e l a t i v e to d i e t i t i a n s ' n u t r i t i o n care plan), there were too many p o s s i b i l i t i e s for misinterpretation and error in t h i s analysis for the instrument to remain as i t was. To overcome t h i s problem, three L i k e r t scale statements were added to the revised instrument, asking i f respondents had changed t h e i r behaviour, whether they f e l t change was not needed, or, i f they could not make dietary changes, what prevented them from making the changes? The revised instrument w i l l provide information about dietary change, but t h i s information w i l l be respondents' perspectives of whether or not the proposed dietary changes were appropriate for th e i r needs, were considered to be feasible at the time of consultation, and were achievable at home. In order to assess the degree of dietary change occurring following consultation with a d i e t i t i a n , combined data c o l l e c t i o n methods of indepth interviews and detailed food records would be required. The two data c o l l e c t i o n methods would complement one another to uncover the subtleties and de t a i l s of intake that could be considered change as well as de t a i l s about the s o c i a l s i t u a t i o n a l b a r r i e r s or aids to making dietary changes. Unintended Ef f e c t s of Nutritio n Education. The t h i r d subsidiary question was, Does the instrument help to reveal unintended effects of n u t r i t i o n education? Respondents were asked to comment on t h e i r contact with a d i e t i t i a n . These remarks contributed support for the psychosocial aspects of n u t r i t i o n education, indicating the notable relationships and partnerships that can develop between d i e t i t i a n s and those they counsel. Excerpts from some returns are-. "I f e l t she was my fri e n d " . "We consulted with several d i e t i t i a n s l o c a l l y as well as in our own area (Chilliwack) and I know my husband received a l o t of helpful advice re: diet. I was actually too i l l to remember too much about the circumstances, however, I do remember that they did everything possible to make eating a pleasant experience". "Every patient should have contact with a d i e t i t i a n . She i s very f r i e n d l y , i t ' s what a patient needs when you are down, depressed". "A knowledgable person and fun to be with". "Our discussions were very f r i e n d l y and enjoyable. My husband even shared a few of his gourmet recipes and she in turn encouraged us to have fun cooking and eating. 'Go for i t ' was her advice. In contrast, my v i s i t s with the counsellors were pain f u l . Her know-it-all attitude about how I should cope with feelings was not for me. I just couldn't relate to my feelings as balloons f l o a t i n g up from my stomach.... Gads! The d i e t i t i a n , on the other hand, became our friend and made us laugh and f e e l happy. A most pleasant and helpful encourager". These comments support the idea discussed in Chapter 2 that the d i e t i t i a n / c l i e n t interaction would be associated with behaviour change and increased feelings of well-being, rather than s t r i c t l y providing information about n u t r i t i o n . The intent of n u t r i t i o n education i s to a s s i s t c l i e n t s to cope with t h e i r situation/condition through diet, but what may not be anticipated i s the importance c l i e n t s place on personal interaction with the d i e t i t i a n . Respondents' comments about interaction with the d i e t i t i a n suggest that the relationship i s an i n t e g r a l part of the process of empowering c l i e n t s to change t h e i r diets. Counselling s k i l l s , active l i s t e n i n g , i n s t r u c t i o n a l s k i l l s , and program planning should be c r i t i c a l aspects of preparing for the profession and for continuing 78 p r o f e s s i o n a l e d u c a t i o n . U n f o r t u n a t e l y , t h e s e a b i l i t i e s a r e o f t e n a c q u i r e d h a p h a z a r d l y t h r o u g h o n - t h e - j o b l e a r n i n g o r p a t t e r n i n g a f t e r r o l e m o d e l s . T h i s can l e a d t o s l o w s k i l l a c q u i s i t i o n v i a t r i a l and e r r o r , i n a p p r o p r i a t e o r m i s i n f o r m e d a p p r o a c h e s t o p a t i e n t e d u c a t i o n and c o u n s e l l i n g b e i n g a d o p t e d , o r l a c k o f r e c o g n i t i o n o f t h e i m p o r t a n c e o f t h e s e s k i l l s i n p r o v i d i n g e f f e c t i v e n u t r i t i o n a l c a r e . An u n i n t e n d e d outcome o f d e v e l o p i n g and t e s t i n g t h e i n s t r u m e n t was o b t a i n i n g i n f o r m a t i o n a b o u t and i n s i g h t i n t o a p p r o a c h e s t o n u t r i t i o n e d u c a t i o n f o r s p e c i f i c t a r g e t g r o u p s o r i n d i v i d u a l s . The s h o r t e n e d t i m e frame and t h e f o c u s on d e t a i l s o f meal p l a n n i n g a r e i m p o r t a n t t o c o n s i d e r i n a c u t e o r p a l l i a t i v e symptom management. C o n v e r s e l y , n u t r i t i o n f o r r e h a b i l i t a t i o n w ould be d i r e c t e d t o t h e d i s c u s s i o n o f n u t r i t i o n a l c o n c e p t s t o meet l o n g e r r a n g e g o a l s r a t h e r t h a n t h e p r o v i s i o n o f d e t a i l e d d i e t i n f o r m a t i o n o r meal p a t t e r n s . Summary Review o f t h e p i l o t t e s t r e s u l t s r e v e a l e d t h a t t h e i n s t r u m e n t was c o n s i d e r e d t o be w o r t h w h i l e from t h e p e r s p e c t i v e s o f e a s e o f a d m i n i s t r a t i o n , t a b u l a t i o n and a n a l y s i s , and u s e f u l n e s s o f r e s u l t s i n p r a c t i c e . W i t h f u r t h e r use and c o n t i n u e d r e f i n e m e n t s t o t h e i n s t r u m e n t , d i e t i t i a n s c a n work t o w a r d i m p r o v i n g p a t i e n t outcomes t h r o u g h t h e p r o v i s i o n o f e d u c a t i o n a l s e r v i c e s and p r o g r a m s t h a t complement p a t i e n t p r e f e r e n c e s f o r i n f o r m a t i o n and s u p p o r t . 79 CHAPTER FIVE: SUMMARY AND RECOMMENDATIONS Summary The purpose of t h i s study was to develop and test an instrument to evaluate n u t r i t i o n education for people with diet related chronic diseases. The instrument was designed to examine (a) patients' perceptions on n u t r i t i o n education (usefulness of the contact with a d i e t i t i a n and the n u t r i t i o n information received), (b) the appropriateness of reported change in eating behaviour compared to the d i e t i t i a n s ' documented n u t r i t i o n care plan and (c) other unintended effects of n u t r i t i o n education. The therapeutic n u t r i t i o n education evaluation instrument developed in t h i s study was based on information collected during a series of interviews with patients who had participated in n u t r i t i o n education while outpatients at the B.C. Cancer Agency i n Vancouver. Data from the f i r s t set of interviews served to develop the Value of Nutrition Education (VNE), a conceptual framework of what patients' perceived as be n e f i c i a l or useful about t h e i r interactions with a d i e t i t i a n . Questions were drafted that addressed each of the concepts in the VNE. The next set of interviews yielded the range of responses to the i n i t i a l set of questions. P i l o t testing of the instrument provided information about respondents' perceptions of the a c c e s s i b i l i t y of d i e t i t i a n s , and respondents' perceptions of improved well-being, interpersonal psychological need fu l f i l m e n t , reduction of uncertainty, and personal control as a re s u l t of t h e i r contact with a d i e t i t i a n . P i l o t t e s t results indicated respondent s a t i s f a c t i o n with the n u t r i t i o n information received and th e i r interactions with a d i e t i t i a n . Nutrition information and advice was considered to be useful and relevant to respondents' personal situations, and the d i e t i t i a n was viewed as a credible source of information and a competent and supportive caregiver. The psychological support aspects of n u t r i t i o n education contributed to improved quality of l i f e through the provision of p r a c t i c a l advice to cope with symptoms or impaired function, and because respondents were provided with a communication outlet to obtain answers to questions or to be reassured about t h e i r condition. These results d i f f e r from t r a d i t i o n a l n u t r i t i o n education evaluation measures that do not focus on a behavioural outcome (for example, measures of knowledge gains). The data col l e c t e d using t h i s instrument are patients' perceptions of the benefits or usefulness of n u t r i t i o n education to manage chronic d i e t related diseases. The physical and psychological benefits patients derived from successful dietary change and contact with a d i e t i t i a n can be considered positive outcomes of n u t r i t i o n education. These results w i l l be useful in d i e t e t i c practice to complement objective physical measures of the impact of dietary manipulation and post i n s t r u c t i o n knowledge changes. Results w i l l enable d i e t i t i a n / n u t r i t i o n i s t s to explore approaches to n u t r i t i o n education that w i l l harmonize with and complement what patients report as being useful to help manage th e i r condition. The instrument was not useful to assess the appropriateness of eating behaviour change r e l a t i v e to the n u t r i t i o n care plan. The d i f f i c u l t y with making t h i s assessment was that the researcher had to interpret reported dietary change(s) and determine whether these changes were consistent with the 81 n u t r i t i o n care plan. This introduced the potential for error in determining whether or not change(s) had occurred and what could be considered dietary change when the d i e t i t i a n ' s suggestions were only p a r t i a l l y implemented. The unintended e f f e c t s of n u t r i t i o n education were respondent appreciation for and reported benefits of contact ' with a d i e t i t i a n for psychosocial reasons (in addition to physical improvements), and differences in respondents' learning needs and preferences r e l a t i v e to t h e i r stage of i l l n e s s . The recognition of the importance of relationships between d i e t i t i a n s and c l i e n t s supports the development of communication and counselling s k i l l s for d i e t i t i a n s . Because of the importance of cl i e n t / h e a l t h care provider relationships in promoting c l i e n t well-being and enhancing s e l f care, health professionals should c u l t i v a t e t h e i r communication and education s k i l l s to better meet the interpersonal and learning needs of c l i e n t s . Examples of other patient groups with chronic i l l n e s s e s that would be sim i l a r to the oncology group in not always experiencing physical benefits to intervention are persons with AIDS, persons with longstanding diabetes, and those with cardiovascular or ga s t r o i n t e s t i n a l diseases. For some of these groups, n u t r i t i o n a l support would not be considered a success based on physical measures, yet the supportive aspects of n u t r i t i o n a l care would account for the continued provision of n u t r i t i o n services despite physical s t a s i s or deterioration. The aim of intervention would be to prevent or slow the rate of physical deterioration. 82 Limitations The evaluation instrument i s in a preliminary state and with continued use w i l l be refined to further c l a r i f y wording which, in turn, w i l l improve the usefulness of r e s u l t s . The revised instrument has not been f i e l d tested. The comparability of results from the revised instrument to those of i t s predecessor are unknown at present but continued use of the instrument w i l l reveal i f the wording changes produce clearer or d i f f e r e n t results. Instrument refinement w i l l come about through the collaboration of d i e t i t i a n s working in various settings and types of practice using the instrument, then submitting results to the researcher for ongoing modifications. The results of the t r i a l of the questionnaire are not generalizable to a l l patients who have participated in n u t r i t i o n education. Rather, application of the findings pertain only to individuals who met the study c r i t e r i a ; ambulatory adult oncology patients who talked with a d i e t i t i a n at the B.C. Cancer Agency. The results obtained in the p i l o t t e s t were favourable, and t h i s may have been because the d i e t i t i a n s at the B.C. Cancer Agency were already interested in counselling effectiveness and made e f f o r t s to enhance the supportive aspects of care owing to t h e i r constant and repeated contact with ambulatory oncology patients. D i e t i t i a n s in other settings may not have had the exposure to such a large number of ch r o n i c a l l y i l l ambulatory patients, hence the results from a test of another group may reveal quite d i f f e r e n t findings because of the c h a r a c t e r i s t i c s and experience of the d i e t i t i a n s involved. 83 Caution should be exercised in using the instrument as i t i s not intended to be used to assess the professional a b i l i t i e s of an i n d i v i d u a l d i e t i t i a n for the purposes of performance review. Rather, the instrument i s intended to study patients' views of a service, in order to determine i f patients perceive the service as useful or b e n e f i c i a l , then to use t h i s information to provide better n u t r i t i o n education services. The danger in applying the instrument to evaluate the performance of an in d i v i d u a l i s that the d i e t i t i a n being reviewed and the reviewer may have d i f f e r i n g philosophies of practice, both of which may be d i f f e r e n t from those of the researcher and the expert panel who reviewed a l l aspects of work on t h i s project. Another reason for not using the instrument to evaluate the practice of an in d i v i d u a l i s that the instrument does not contain any e x p l i c i t c r i t e r i a for evaluating practice. The instrument measures patients' perceptions of a service, not performance standards for in d i v i d u a l d i e t i t i a n s . Related Observations Data c o l l e c t i o n and analysis for t h i s study led to an observation about n u t r i t i o n and cancer that was not the purpose of the study, but i s useful for c l i n i c a l d i e t i t i a n s to consider. Key informants and interview respondents reported on t h e i r i n t e r a c t i o n with a d i e t i t i a n for symptom management or r e h a b i l i t a t i o n , but did not talk about seeing a d i e t i t i a n because they had cancer. Informants and respondents related symptoms to the tumour or the treatment they had received, but did not relate seeing the d i e t i t i a n in terms of treatment of t h e i r disease. This was surprising as oncology i s a specialty 84 within d i e t e t i c practice where counselling i s aimed at a s s i s t i n g patients to manage t h e i r cancer. Informants and respondents, on the other hand, indicated they had seen a d i e t i t i a n to obtain advice about p a r t i c u l a r symptoms they had been experiencing. This d i s t i n c t i o n between the understanding of patients and the b e l i e f s of d i e t i t i a n s i s useful for d i e t i t i a n s to consider in oncology and other types of practice, as the r e a l i z a t i o n that patients may be focusing on symptoms, and not the disease as a whole, may help to focus or d i r e c t the counselling process. Recommendations  Application of the Instrument The evaluation instrument developed and tested in t h i s study i s meant to be used by n u t r i t i o n professionals to assess c l i e n t perceptions about n u t r i t i o n education services, then to act on these results to plan approaches to n u t r i t i o n education that complement what c l i e n t s report they benefitted from or appreciated. The desired outcome of changing n u t r i t i o n education approaches i s to promote dietary change and to o f f e r support in order to improve both physical and psychological aspects of quality of l i f e . That patients reported benefitting from n u t r i t i o n education and support i s an important finding for n u t r i t i o n and d i e t e t i c s . These results w i l l encourage d i e t i t i a n / n u t r i t i o n i s t s who are concerned that t h e i r work does not produce observable and measurable improvements in c l i e n t / p a t i e n t health and where the continuation of services to patients who deteriorate despite medical and n u t r i t i o n a l support i s being challenged. Future work in t h i s area should be directed at targeting p a r t i c u l a r patient groups in order to t a i l o r n u t r i t i o n education services in an e f f o r t to improve health outcomes. There are probably as many d i f f e r e n t approaches to n u t r i t i o n education required as there are patient groups. D i e t i t i a n s should be encouraged to explore new, exciting and innovative approaches to n u t r i t i o n education practice and not adhere to standardized i n s t r u c t i o n a l techniques. The revised instrument i s generic in layout to allow future users to f i l l i n d e t a i l s that would t a i l o r the instrument for use at a p a r t i c u l a r i n s t i t u t i o n or with a s p e c i f i c target group. The parts of the instrument to be f i l l e d in or modified are: i) copy onto i n s t i t u t i o n letterhead or a f f i x logo i i ) question 3 - insert the name of the i n s t i t u t i o n -note the symptom(s) or condition respondents would most commonly receive n u t r i t i o n information about; i i i ) item 4, statement v i i i - for the target group being studied, in s e r t the symptom or physical measure that most commonly improves with dietary change; iv) name, t i t l e , department and telephone number of auditor; v) instructions on how the respondent i s to return the completed instrument (to a drop box or by mail). When the target group and the present approach to n u t r i t i o n education are well defined, such as patients attending cardiac classes in hospit a l , the f i r s t page of the instrument w i l l not be necessary because the questions are about the number of times a patient has talked with a d i e t i t i a n and what the reason was for seeing a d i e t i t i a n . In these cases the d i e t i t i a n may choose to provide only the L i k e r t scale item and the request for comments. The results obtained w i l l be s p e c i f i c to the target group being studied. D i e t i t i a n s working with similar groups in d i f f e r e n t settings could benefit from studying the results obtained by colleagues at other i n s t i t u t i o n s . Ideally, reports of these evaluations should be brought together to f a c i l i t a t e further revisions/refinements to the instrument to move the instrument beyond i t s current preliminary state and to f a c i l i t a t e information sharing. The generic nature of the instrument should be retained rather than producing a number of documents that only meet the needs of a defined group or a p a r t i c u l a r i n s t i t u t i o n . This i s consistent with existing c l i n i c a l n u t r i t i o n quality assurance audits where assessment forms are generic and are applied i n a vast array of settings. The administration of t h i s instrument w i l l provide d i e t i t i a n s with information about patients' needs for n u t r i t i o n education. Overcoming s i t u a t i o n a l b a r r i e r s to learning and dietary change (including c l i e n t s ' s o c i a l situations, the physical and emotional environment in hospi t a l , or the influence of i l l n e s s on learning) w i l l require careful and c r i t i c a l problem solving. Fortunately, respondents are able to provide information that can be the basis for developing educational approaches. I t i s hoped that by enhancing patients' a b i l i t i e s to manage t h e i r conditions independently at home there w i l l be less s t r a i n and patient reliance on the health care system. 87 Comments about the Research Design and Research Findings From the perspective of what was learned in conducting t h i s study, the research design was considered to be sat i s f a c t o r y . For those interested in continuing work in thi s area, i t would be advisable to define the target groups more c l e a r l y to produce results that w i l l help determine what changes in educational approach would best meet respondents' needs. The apparent differences in the reported benefits and preferences of acutely i l l patients for content and timing of intervention compared to r e h a b i l i t a t i o n patients could be more c l e a r l y elucidated by e x p l i c i t l y defining the c r i t e r i a for inclusion of the target group. In t h i s study, grouping of respondents was done in the process of exploring how to analyze the data. The apparent differences between groups should be investigated more extensively to provide d i e t i t i a n s and other health p r a c t i t i o n e r s with guidance on how to plan health education based on patients' phase or stage of i l l n e s s . The interviews of key informants served to define the questions about how patients benefitted from t h e i r contact with a d i e t i t i a n . The range of response interviews led to clearer d e f i n i t i o n and wording of the questions. The formation of successive steps of data c o l l e c t i o n and data analysis as the study progressed was exciting and interesting and allowed for inclusion of factors in the analysis that were unforeseen in the research proposal development process. As with the discovery of apparent differences in the learning needs of the symptom management and r e h a b i l i t a t i o n groups by retrospectively grouping the data, the narrative comments of respondents revealed information about unintended effects of n u t r i t i o n education. These short comments indicated 88 respondent appreciation for the relationship that had developed with the d i e t i t i a n . The exploratory approach to data analysis may have slowed the production of resu l t s , but ov e r a l l the results provided a comprehensive picture of the d i e t i t i a n / p a t i e n t interaction and what respondents reported as b e n e f i c i a l or useful. Without t h i s approach to data c o l l e c t i o n and analysis, d e t a i l s of the d i e t i t i a n / c l i e n t i nteraction and exploration of how to translate these findings into d i e t e t i c practice, may not have become apparent. Future Directions in Nutrition Education Evaluation The instrument developed in thi s study i s useful in id e n t i f y i n g issues i n n u t r i t i o n education that require further study. As such, the results serve as a star t i n g point for inquiry into the many aspects of n u t r i t i o n education practice for diet related diseases. Some issues in practice are outlined below. Although t h i s instrument was developed with a focus on ambulatory care, i t i s c r i t i c a l to consider the learning needs of hospitalized patients. The inpatient setting i s poorly suited to patient learning. I l l n e s s l i m i t s patients' a b i l i t i e s to concentrate and retain information; ward a c t i v i t y , noise and lack of privacy are detrimental to creating an environment conducive to learning; and dietary changes cannot be practised in patients' home settings while admitted to hospital. 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Journal of Nutrition Education, l_2(Suppl. 2), 131-137. Ministry of Health. (1989). Deaths in B.C. from heart  disease-by sex and age (1987). V i c t o r i a , B.C.: Author. National Institutes of Health. (1982). Adult patient  education in cancer. Washington, DC: Author. Olson, CM., and Kelly, G.L. (1989). The challenge of implementing theory-based intervention research in nu t r i t i o n education. Journal of Nutrition Education, 21(6), 280-284. Owen, D.C. (1989). Nurses' perspective on the meaning of hope in patients with cancer: A qu a l i t a t i v e study. Oncology Nursing Forum, 16.(1), 75-79. Peterson, E. (1980). Making n u t r i t i o n education r e a l l y work. Journal of Nutrition Education. 12.(2), 92-93. Picus, S.S. (1989). Evaluation of the n u t r i t i o n counseling environment of hospitalized patients. Journal of the  American D i e t e t i c Association, 89.(3), 403-405. Poolton, M. (1972). Predicting application of n u t r i t i o n education. Journal of Nutrition Education, Summer, 110-113 Rickel, L. (1981). Patient education. Oncology Nursing  Forum.8( 2) , 26-31. Schwartz, N. (1988). Development of a scale to measure c l i e n t s a t i s f a c t i o n with ambulatory n u t r i t i o n a l care. Journal of the Canadian D i e t e t i c Association, 49.(3), 163-168. Sims, L.S. (1981). Further thoughts on research perspectives in n u t r i t i o n education. Journal of Nutrition Education, 13(Suppl. 1), S70-S75. Sims, L.S. (1987). Nutrition education research: Reaching toward the leading edge. Journal of the American D i e t e t i c  Association Supplement, 87.(9), S10-S18. Vickery, C.E., and Hodges, P.A. (1986). Counseling strategies for dietary management: Expanded p o s s i b i l i t i e s for e f f e c t i n g behavior change. Journal of the American  D i e t e t i c Association, 86.(7), 924-928. Wiersma, W. (1986). Research methods in education - an  introduction. Toronto: A l l y n and Bacon, Inc. Wingate, A., and Lackey, N. (1989). A description of the needs of non i n s t i t u t i o n a l i z e d cancer patients and t h e i r primary caregivers. Cancer Nursing, 12.(4), 216-225. Yarbrough, P. (1981). Communication theory and n u t r i t i o n education research. Journal of Nutrition Education, 13(Suppl.1), S16-S27. 96 Appendix C Evaluation of Nutritio n Education (original) INSTRUCTIONSs Please read each question or statement c a r e f u l l y before responding. l.Were you able to see the d i e t i t i a n when you wanted to? ( c i r c l e choice) Yes No If no, please explain: 2. Did you talk with the d i e t i t i a n more than once? ' ( c i r c l e choice) No Yes If yes, was the follow up contact with the d i e t i t i a n useful? ( c i r c l e choice) No Yes Please explain: 3.Why did you talk with a d i e t i t i a n at the B.C. Cancer Agency? (check any that apply) for advice on coping with my symptoms (for example - poor appetite, weight change, sore mouth) for reassurance that I was eating properly for general n u t r i t i o n advice I am not sure someone recommended I see the d i e t i t i a n other (comments): What changes in your diet, i f any, did the d i e t i t i a n suggest you make? no changes in my diet were suggested The d i e t i t i a n suggested the following changes: What changes in your diet, i f any, did you actually make after t a l k i n g with the d i e t i t i a n ? I made the following changes in my diet: I did not change my diet because...(explain): 6. Circle how much you agree or disagree with each statements 1 disagree strongly 2 disagree 3 neither agree nor disagree 4 agree 5 agree strongly NA not applicable disagree strongly 1. the dietitian provided useful information 1 2 i i . the dietitian knew what she was talking about 1 2 i i i . the advice I received from the dietitian was suited to my special needs 1 2 iv. I was less anxious about my condition after talking with the dietitian 1 2 v. after talking with the dietitian, planning and preparing meals was easier 1 2 vi. after talking with the dietitian, eating was easier 1 2 v i i . there was no benefit to talking with the dietitian 1 2 v i i i . after talking with the dietitian I felt more in control of my condition 1 2 ix. after changing my diet my symptom(s) improved 1 2 x. the dietitian provided support and encouragement 1 2 xi. the dietitian cared about me 1 2 x i i . anyone with my condition should talk with a dietitian 1 2 x i i i . i t was upsetting to talk with the dietitian (please explain why) 1 2 99 7.Have you any other comments about the contact you had with the d i e t i t i a n ? i Thank you. Catherine Hauchecorne, Registered D i e t i t i a n / N u t r i t i o n i s t Master's student, Adult Education, UBC (December 1990) Place t h i s form in the envelope provided. Return i t to your nurse or return i t by mail in the postage paid envelope. Appendix D  Raw Data - A l l Respondents (n=28) Item Respondent 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 1. Were you able to see a d i e t i t i a n when you Y l l l l l l l l l l l l l 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 wanted to? _ _ _ _ _ _ _ _ _ _ - - _ - - _ - - -2a. Did you t a l k to the d i e t i t i a n more than Y - - 1 1 1 1 - 1 1 1 - 1 1 1 1 1 1 1 - 1 - - 1 1 1 - - 1 once? N I 1 - - - 1 - - - - - - - 1 - 1 1 - - - 1 1 -b. If yes, was follow Y - - 1 1 1 1 - 1 1 - - 1 1 1 1 1 1 1 - 1 - - 1 1 1 - - 1 up useful? N - - - - - - - - - 1 - - - - - - - - - - - - - - - - - -3. Why did you ta l k with a d i e t i t i a n ? - f o r advice on coping with my symptoms 1 1 1 1 1 1 1 - - 1 - 1 1 1 1 1 1 1 - 1 - 1 1 1 - - - 1 -for reassurance I was eating properly 1 - 1 1 - 1 1 1 - - - - - 1 1 - 1 - - 1 - - 1 1 - 1 1 1 -for general n u t r i t i o n advice 1 - 1 1 - 1 1 - 1 1 - - - - 1 1 1 - 1 - - - 1 1 1 1 1 1 -I am not sure -someone recommended I see the d i e t i t i a n 1 Appendix D ( c o n t i n u e d )  Raw Data - A l l Respondents (n=28) Item S i x S t a t e m e n t s Respondents 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 1. u s e f u l i n f o r m a t i o n i i . knew what she was t a l k i n g about i i i . a d v i c e s u i t e d t o my s p e c i a l needs i v . l e s s a n x i o u s v. p l a n n i n g and p r e p a r i n g meals e a s i e r v i . e a t i n g was e a s i e r v i i . no b e n e f i t v i i i . more i n c o n t r o l i x . symptom(s) improved x. s u p p o r t and encouragement x i . c a r e d about me x i i . anyone s h o u l d t a l k w i t h a d i e t i t i a n x i i i . u p s e t t i n g 4 5 5 3 5 4 4 5 5 4 5 5 4 4 4 5 5 5 4 5 5 5 4 5 5 3 4 5 4 5 5 4 5 5 5 5 5 5 5 5 4 4 4 5 5 5 4 5 5 5 4 5 5 4 5 5 4 5 5 4 5 5 5 4 5 4 4 5 4 4 3 5 4 4 4 5 5 5 5 5 5 4 4 5 3 5 4 4 5 3 4 4 5 3 3 5 4 3 3 0 4 4 4 5 4 4 4 5 5 4 5 3 3 - 4 4 5 4 4 4 5 2 4 4 3 4 4 5 5 5 2 5 5 3 4 5 4 3 3 2 3 4 4 4 4 3 0 3 2 5 5 3 5 3 4 3 3 2 1 1 4 2 3 4 1 1 2 3 3 4 3 4 5 5 2 2 1 3 2 1 3 1 1 2 1 1 2 4 2 0 2 1 4 3 4 4 3 5 4 3 5 5 3 1 5 4 4 3 0 4 5 4 5 4 4 3 5 4 0 4 4 0 - 3 3 3 3 3 0 5 2 0 5 4 4 2 0 4 5 4 5 4 3 3 3 3 0 0 0 4 5 5 3 5 4 4 5 5 4 3 5 5 4 3 5 5 5 5 4 3 5 5 5 4 4 3 4 5 5 4 5 4 3 5 5 4 4 5 5 4 4 5 4 5 3 5 4 3 5 5 5 4 4 4 3 5 5 4 5 4 4 5 5 4 4 5 5 4 3 5 5 5 4 5 5 3 5 5 5 4 4 5 3 - - 2 2 1 1 1 1 2 1 1 1 1 3 0 1 1 1 1 1 3 1 1 1 1 1 1 102 Appendix E Raw Data - Initial and After One Week Returns (n=18) Item Respondent l r 2r 3r 4r 5r 6r 7r 8r 9r 10rllrl2rl3rl4rl5rl6rl7rl8r 1. Were you able to see the dietitian when you Y 11 11 11 11 11 11 11 11 11 11 11 1- 11 11 11 11 11 11 wanted to? N — — — — — — — — — — — — — — — — — — 2a. Did you talk with the dietitian more than Y 11 11 11 11 11 — 11 11 11 11 11 11 — 11 1 once? N 11 11 11 — 11 — 1- 11 b. If yes, was follow up contact Y 11 11 11 11 11 11 11 11 11 11 — 11 1 useful? N 3. Why did you talk with a dietitian? -for advice on coping with my symptoms 11 11 11 11 11 11 11 11 11 11 11 1- 11 11 11 11 11 11 -for reassurance I was eating properly 11 — 11 11 -- 11 -1 11 11 — 11 — 11 -for general nutrition advice 11 — 11 — 11 ~ 11 11 1 11 1- 11 -I am not sure -someone recommended I see the dietitian 11 11 -1 1- 11 11 -other -1 — 103 Appendix E (continued)  Raw Data - Initial and After One Week Returns (n=18) Item Six Statements Respondent l r 2r 3r 4r 5r 6r 7r 8r 9r 10rllrl2rl3rl4rl5rl6rl7rl8r i . useful information 44 55 55 55 45 55 -5 55 55 44 44 55 55 55 54 54 55 33 i i . knew what she was talking about 44 55 55 55 55 55 -5 55 55 44 44 55 54 55 54 54 55 44 i i i . advice suited to my special needs 44 50 55 55 55 45-5 44 55 44 33 00 45 55 53 54 55 44 iv. less anxious after 33 55 44 55 31 45 -5 34 55 44 33 00 45 55 43 53 55 44 v. planning and preparing meals was easier 33 -0 44 55 44 44 -5 43 45 33 44 5- 54 55 30 54 45 33 vi. eating was easier 33 40 45 44 34 35 — 33 35 43 33 55 54 55 30 34 43 33 v i i . no benefit 22 21 11 21 11 11 -1 11 11 21 44 00 22 11 43 32 -1 44 v i i i . more in control 33 45 44 55 44 55 -5 13 55 43 44 00 44 55 40 54 44 00 ix. symptom(s) improved 03 -0 33 32 34 03 -5 13 55 40 44 00 44 55 30 33 33 00 x. support and encouragement 44 55 55 55 44 55 -5 33 55 54 44 55 54 55 30 33 33 44 xi. cared about me 44 55 55 55 44 55 -5 44 55 54 44 55 44 55 33 54 55 44 x i i . anyone should talk with a dietitian 34 50 55 55 45 55 -5 45 55 54 44 55 55 55 33 54 55 44 x i i i . upsetting 32 -0 11 21 11 11 -1 1- 11 11 11 01 12 11 33 12 11 11 104 Appendix F Raw Data - Symptom Management Respondents (n=16) Item Respondent 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 1. Were you able to see the dietitian YES 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 when you wanted to? NO - - - - - - - - - - - - - - - -2a. Did you talk to the dietitian more than once? YES 1 1 1 1 1 1 1 1 1 - 1 1 1 - 1 1 NO 1 - - - 1 - -b. If yes, was the follow up contact with the dietitian YES 1 1 1 - 1 1 1 1 1 - 1 1 1 - 1 1 useful? NO 1 _ _ _ _ _ _ _ 3. Why did you talk with a dietitian at the B.C. Cancer Agency? -for advice on coping with my symptoms 1 1 - 1 1 1 1 1 1 1 1 1 1 1 1 1 -for reassurance I was eating properly -for general nutrition advice 1-1 1 - 1 - 1 1 1 1 1 1 1 1 - - 1 - 1 1 1 - 1 1 1 - - - 1 -I am not sure -someone recommended I see the dietitian 1 1 - - - - 1 -other 105 Appendix F (continued)  Raw Data - Symptom Management Respondents (n=16) Statement Respondent 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 6. i . useful information 3 5 5 4 4 4 5 5 5 4 5 4 5 5 4 4 i i . knew what she was t a l k i n g about 4 5 5 5 4 4 5 5 5 4 5 4 5 5 4 4 i i i . advice suited to my special needs 4 5 4 4 4 3 5 4 4 4 5 5 5 5 4 5 i v . l ess anxious a f t e r 4 5 4 3 4 3 0 4 4 3 4 3 5 4 3 4 v. planning and preparing meals was easier 4 5 4 2 3 4 5 5 5 3 4 3 5 3 4 4 v i . eating was easier 4 4 3 2 4 4 5 5 - 3 4 3 3 3 3 5 v i i . no benefit 3 2 1 2 2 2 0 2 1 2 1 1 1 4 4 2 v i i i . more i n control 3 5 5 3 4 3 0 4 5 3 4 4 5 4 4 3 i x . symptom(s) improved 3 3 0 2 4 2 0 4 5 0 3 3 5 3 4 5 X. support and encouragement 3 5 5 4 5 3 5 5 5 4 5 4 5 3 4 5 x i . d i e t i t i a n cared 4 5 5 4 5 4 5 4 5 4 5 4 5 3 4 5 x i i . anyone should t a l k with a d i e t i t i a n 4 5 5 4 5 3 5 5 5 3 5 4 5 3 4 5 x i i i . upsetting 2 2 1 2 1 3 0 1 1 3 1 1 1 3 1 1 106 Appendix G Raw Data - Rehabilitation Respondents (n=10) Item Respondent 1 2 3 4 5 6 7 8 9 10 Were you able to see the dietitian *_»_ when you wanted to? NO YES 1 1 1 1 1 1 1 1 1 1 -I am not sure 2a. Did you talk to the dietitian YES 1 1-1 -more than once? NO 1 1 - 1 1 1 - 1 - 1 b. If yes, was the follow up contact with the dietitian YES 1 1-1 -useful? NO _ _ _ _ _ _ _ _ _ _ Why did you talk with a dietitian at the B.C. Cancer Agency? -for advice on coping 11 1-1 -with my symptoms -for reassurance I was - 1 1 1 1 1 eating properly -for general nutrition advice - 1 1 1 11 1 -someone recommended I see the dietitian 11 1 -other Appendix G (continued)  Raw Data - Rehabilitation Respondents (n=10) Statement Respondent 1 2 3 4 5 6 7 8 9 10 6. i . useful information 5 4 5 4 5 5 5 4 5 3 i i . knew what she was talking about 5 5 5 4 5 5 5 5 5 4 i i i . advice suited to my special needs 5 5 5 4 4 5 5 4 5 4 iv. less anxious after 5 4 5 4 3 4 5 5 3 4 v. planning and preparing meals was easier - 4 5 2 4 5 5 3 2 3 vi. eating was easier 4 0 - 2 3 5 5 3 2 3 v i i . no benefit 2 3 - 4 1 1 1 1 1 4 v i i i . more in control 4 3 5 4 1 4 5 4 4 0 ix. symptom(s) improved - 3 5 4 0 4 5 0 0 0 X. support and encouragement 5 4 5 3 3 4 5 4 3 4 xi. dietitian cared 5 3 5 3 4 4 5 4 4 4 x i i . anyone should talk with a dietitian 5 4 5 4 4 5 5 4 4 4 x i i i . upsetting - 1 1 1 1 1 1 1 1 1 108 Appendix H Nutrition Education Evaluation Instrument  Guidelines for Use Intended Uses - to assess patients' abilities to make dietary change(s) - to assess patients' physical and emotional quality of l i f e as a result of nutrition education and dietary change - to assess patients' views about services being provided - to identify barriers to successful dietary change - to identify other nutrition related issues of concern to patients Intended Users - clinical dietitians working in ambulatory care settings or in inpatient settings Target Respondents - individuals with chronic diet related diseases - ambulatory patients - previously hospitalized patients (post discharge follow up) CAUTIONi This instrument is not intended to be used to evaluate the professional performance of individual dietitian/nutritionists for the purposes of performance review. The results obtained in applying this instrument are respondents' perceptions of nutrition education services and are not related to medically determined physical status outcomes. 109 Before Using the Instrument The parts of the instrument to be completed or modified are: i) copy onto institution letterhead or affix logo i i ) question 3 - insert the name of the institution -note the verb that best describes what respondents are able to do after nutrition intervention (such as coping or managing) -note the symptom(s) or condition(s) respondents most commonly receive nutrition information about; leave space for respondents to insert their particular symptom(s) or condition(s) i i i ) item 4, statement v i i i - for the target group being studied, insert the symptom or physical measure that most commonly improves with dietary change; iv) name, t i t l e , department and telephone number of auditor; v) instructions on how the respondent is to return the completed instrument (to a drop box or by mail). 110 Evaluation of Nutrition Education (revised) CAUTION: This instrument is not to be used to evaluate individual nutrition  professionals for the purpose of performance appraisal or review. INSTRUCTIONS s Please read each question or statement carefully before responding. 1. Were you able to talk with a dietitian when you wanted to? (circle choice) Yes No If no, please explain: 2. Did you talk with a dietitian more than once? (circle choice) Yes No If yes, was the follow up contact useful? (circle choice) Yes No Please explain: 3. Why did you talk with a dietitian at (insert name of institution)? (check any that apply) for advice on with my (symptoms/ ) ( , , leave a space to allow respondents to insert their symptom(s)/condition) for reassurance that I was eating properly for general nutrition advice I am not sure someone recommended I see the dietitian other (comments): I l l 4. Circle how much you agree or disagree with each statements 1 disagree strongly 2 disagree 3 neither agree nor disagree 4 agree 5 agree strongly NA not applicable disagree strongly agree strongly i . the dietitian provided useful information 1 2 3 4 5 i i . the dietitian knew what she/he was talking about 3 4 5 i i i . the advice I received from the dietitian was suited to my special needs 1 2 3 4 5 iv. after talking with the dietitian I knew what to eat for my special needs 1 2 3 4 5 v. after talking with the dietitian I changed my diet vi. by talking with the dietitian I learned I did not need to change my diet as my intake was already suited to my needs v i i . after talking with the dietitian I could not change my diet 1 2 3 4* 5* * If you circled 4 or 5, were any of these a problem? knowing what to eat getting to the store finding the foods I needed in the store the foods I needed cost too much preparing meals and snacks eating other? v i i i . after changing my diet my improved 1 2 3 4 5 NA 112 ix. after talking with the dietitian I felt better emotionally 1 2 3 4 5 x. after talking with the dietitian I felt better physically 1 2 3 4 5 xi. after talking with the dietitian I felt in control of my condition 1 2 3 4 5 NA x i i . the dietitian provided support and encouragement 1 2 3 4 5 x i i i . the dietitian cared about me 1 2 3 4 5 xiv. anyone with my condition should talk with a dietitian 1 2 3 4 5 xv. there was no benefit in talking with the dietitian 1 2 3 4 5 5. Have you any other comments about the contact you had with the dietitian? Thank you. Your answers will help us to provide better nutrition education services. (insert name, department and telephone) (insert instructions on how you want the respondent to return the instrument to you) 

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