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Learning needs of cancer patients receiving chemotherapy : patient, nurse, and physician perceptions Matheson, Karen Ann 1987

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LEARNING NEEDS OF CANCER PATIENTS RECEIVING CHEMOTHERAPY PATIENT, NURSE, AND PHYSICIAN PERCEPTIONS by KAREN ANN MATHE SON B.S.N., The U n i v e r s i t y of B r i t i s h C o l u m b i a , 1979 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES The S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s as c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA O c t o b e r 1987 © K a r e n Ann Matheson, 1987 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 h)itrst The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date Qta&fav IXj l W DE-6(3/81) i i ABSTRACT Accurate assessment of educational needs i s ce n t r a l to the planning of e f f e c t i v e patient education programs. Adult learning theory holds that the more agreement that e x i s t s i n the educator's and the learner's assessment of learning needs, the higher the p r o b a b i l i t y that e f f e c t i v e learning w i l l occur. This d e s c r i p t i v e survey was c a r r i e d out to compare the learning needs of cancer patients r e c e i v i n g chemotherapy as perceived by three groups involved i n patient education: nurses, physicians, and patients themselves. Using the Assessment of Learning Needs Questionnaire (ALNQ) developed by Lauer, Murphy, and Powers (1982) and demographic data questionnaires developed by the researcher, the perceptions of patients' learning needs held by a convenience sample of 20 lymphoma patients, 24 nurses, and ten physicians were studied. Responses to the r a t i n g and ranking scales of the ALNQ were analyzed using nonparametric s t a t i s t i c a l techniques to determine the existence and l o c a t i o n of differences i n perceptions among the three groups. General comments about patient education and the ALNQ were gathered from the patient group i n an interview s e t t i n g and from the two care giver groups through responses to two open-ended questionnaire items. Findings revealed that the learning needs of patients undergoing chemotherapy tend to focus on concerns related to the treatment i i i experience, and the knowledge and s k i l l s required to cope with the impact of the disease and treatment on t h e i r l i v e s . Patients described themselves as most knowledgeable i n areas r e l a t i n g to l i f e experience, rather than disease or treatment re l a t e d areas, and were oriented to s u r v i v a l i n t h e i r learning needs. The three groups demonstrated considerable s i m i l a r i t y i n t h e i r perceptions of areas problematic to patients and areas i n which patients have the most knowledge. However, despite presumed knowledge and expertise i n dealing with the concerns of chemotherapy patients, nurses' and physicians' perceptions of patients' learning needs d i f f e r e d from those held by patients. The care givers perceived patients to be more concerned with learning needs r e l a t e d to a c t i v i t i e s of d a i l y l i v i n g than patients reported. Implications for nursing p r a c t i c e and education are suggested, and recommedations made for further study. i v TABLE OF CONTENTS Page Abstract i i L i s t of Tables v i i Acknowledgements v i i i CHAPTER ONE INTRODUCTION 1 Background and Sig n i f i c a n c e 2 Theoretical Framework 4 Assumptions About Adult Learners 5 Assumptions About Learning and Teaching 6 Diagnosis of Learning Needs 7 Statement of the Problem 8 Purpose of the Study 9 D e f i n i t i o n of Terms 10 Limitations 10 CHAPTER TWO REVIEW OF THE LITERATURE 12 Adult Learning Theory and Patient Education L i t e r a t u r e 14 Health Professionals' Perception of Patient Needs 16 Patients' Perceived Learning Needs 21 Comparison of Patients' and Professionals' Perceptions of Patients' Needs 29 Summary 36 CHAPTER THREE METHODOLOGY 37 Instruments 37 Assessment of Learning Needs Questionnaire 37 Demographic Questionnaires 39 Setting 39 Subjects 40 Human Rights and E t h i c a l Considerations 41 Data C o l l e c t i o n Procedure 42 Data Analysis 43 V CHAPTER FOUR PRESENTATION AND DISCUSSION OF FINDINGS 45 Section 1: The Sample 45 Patients 45 Age and Sex 45 Ma r i t a l Status 45 Educational Level 46 Occupation and Employment Status 46 Diagnosis and Treatment 46 Nurses 48 Physicians 48 Section 2: Assessment of Learning Needs Questionnaire: Rating Scale 49 Section 3: Assessment of Learning Needs Questionnaire: Ranking Scales 60 Areas Patients Find Most Problematic 61 Areas i n Which Patients Have the Most Knowledge 64 Areas i n Which Patients Want the Most Information 67 Discussion of Ranking Scale Findings 70 Section 4: Comments of the Respondents 76 Comments about the ALNQ 76 Comments about Patient Education 78 Summary 82 CHAPTER FIVE SUMMARY, CONCLUSIONS, IMPLICATIONS, AND RECOMMENDATIONS 85 Summary 85 Conclusions 90 Implications f o r Nursing Practice and Education 91 Recommendations for Further Study 92 REFERENCES 94 v i APPENDICES Appendix A Assessment of Learning Needs Questionnaire (Patient Form) 99 Appendix B Assessment of Learning Needs Questionnaire (Staff Form) 106 Appendix C Demographic Questionnaire: Patients 112 Appendix D Demographic Questionnaire: Nurses 115 Appendix E Demographic Questionnaire: Physicians 117 Appendix F Staff Information Le t t e r 119 Appendix G Patient Information Le t t e r 121 Appendix H St a f f Consent Form 123 Appendix I Patient Consent Form 125 Appendix J Chemotherapy Protocol Information 127 Appendix K Mean Ratings of Responses to ALNQ Rating Scale Items 129 v i i LIST OF TABLES Table Page I. Group Comparison of Rating Scale Items Where Patients' Mean Ratings = 4 or Above 50 I I . Rating Scale Items Where Mean Ratings = 4 or Above for Sta f f Only 54 I I I . Kruskal-Wallis Multiple Comparisons Test: Rating Scale Results 56 IV. Responses to the Ranking Scale Items of the ALNQ: Which of these areas do patients f i n d most problematic? 62 V. Ranking Scale: Most Problematic Areas for Patients 63 VI. Responses to the Ranking Scale Items of the ALNQ: Which of these same areas do patients have the most knowledge about? 65 VII. Ranking Scale: Areas i n Which Patients Have Most Knowledge 66 VIII. Responses to the Ranking Scale Items of the ALNQ: Which of these same areas do patients want the most information about? 68 IX. Ranking Scale: Areas i n Which Patients Want the Most Information 69 X. Summary of S t a t i s t i c a l l y S i g n i f i c a n t Ranking Scale Results Using the Kruskal-Wallis one-way ANOVA 71 XI. Kruskal-Wallis Multiple Comparisons Test: Ranking Scale Results 72 v i i i ACKNOWLEDGEMENTS I would l i k e to thank my family and friends, who supported me i n countless ways with t h e i r love, prayers, and laughter, and believed I could do i t . I would l i k e to thank Sheila Stanton, Barbara Warren, and Dr. Marilyn Willman, who generously shared t h e i r expertise, enthusiasm, and perspective i n guiding me through the research process. I am gra t e f u l to A l l a n Robertson, Ann Jackson, and Dr. Ann H i l t o n f o r t h e i r assistance i n de-mystifying computer technology, and to Peter Schumacher for s t a t i s t i c a l advice. Special thanks are due to the nursing and medical oncology s t a f f of the Cancer Control Agency of B r i t i s h Columbia f o r t h e i r support and commitment to improving patient care, and to the patients who gave so generously of t h e i r time and themselves to p a r t i c i p a t e i n t h i s research. 1 CHAPTER ONE Introduction The Canadian Cancer Society (1987) estimates that one i n three Canadians w i l l develop some form of cancer during t h e i r l i f e t i m e . A diagnosis of cancer involves people i n the bewildering and complex world of today's health care system, where they encounter unfamiliar surroundings, language, and routines. Professional and popular l i t e r a t u r e a l i k e acknowledges that health care professionals and patients d i f f e r i n t h e i r knowledge l e v e l , b e l i e f s , values, and p r i o r i t i e s , and hence i n t h e i r approaches to l i f e and i l l n e s s (Fiore, 1984; Friedson, 1975). These differences influence the nature and outcome of the care provided, and patient education i s no exception. Physicians and nurses provide information according to t h e i r professional views of what i s important f o r patients and family members to know (Cassee, 1975). However, patients' perceptions of t h e i r learning needs may d i f f e r from those i d e n t i f i e d by nurses and physicians. Patient education i s an important component of cancer care, yet teaching recommendations are based on what health care professionals think should be taught, rather than what patients say they want and need to learn (Lauer, Murphy, and Powers, 1982). More i n v e s t i g a t i o n of cancer patients' perceptions of t h e i r learning needs i s needed to e s t a b l i s h understanding among patients, nurses, and physicians and thereby enhance patient education. 2 Background and Sign i f i c a n c e Patient education i s "a planned process that e n t a i l s the i d e n t i f i c a t i o n of a patient's needs and the exchange of knowledge and s k i l l between the nurse/teacher and the patient/learner" (Long, 1984, p. 583). Patient education plays a key r o l e i n the prevention, promotion, and maintenance or modification of health-related behaviours (Redman, 1976). New knowledge, understanding, and s e l f - c a r e s k i l l s are considered necessary to achieve the highest p o t e n t i a l f o r q u a l i t y of l i f e f o r i n d i v i d u a l s experiencing a chronic disease (Long, 1984). Patient benefits have been a t t r i b u t e d to patient education. Levine (1982) suggests increased adherence to treatment regimens i s one such benefit . According to C a s s i l e t h , Zupkis, Sutton-Smith, and March (1980), providing information to cancer patients a s s i s t s them i n sustaining hopeful a t t i t u d e s . Research has shown that following educational programs, cancer patients demonstrated increased independence and s p e c i f i c s e l f - c a r e behaviours i n dealing with disease and treatment e f f e c t s (Dodd, 1983; Krouse and Krouse, 1982). Welch-McCaffrey (1985) points out the ro l e of patient education i n a s s i s t i n g cancer patients to deal with anxiety and c r i s i s and to maintain a sense of c o n t r o l and p a r t i c i p a t i o n i n t h e i r plan of care. C a s s i l e t h et a l . (1980) studied the information and p a r t i c i p a t i o n preferences of 256 cancer patients using an information s t y l e s questionnaire and the Beck Hopelessness Scale. Results indicated "most patients want to know as much as possible about t h e i r i l l n e s s and 3 treatment, and most prefer to p a r t i c i p a t e i n decisions about t h e i r care" (p. 835). Accurate assessment of educational needs i s a key element i n the planning of e f f e c t i v e teaching programs (Knowles, 1980), but how to assess the learning needs of adults i s s t i l l debated. What i s an educational need? Who defines and i d e n t i f i e s the learning needs of patients? How are learning needs p r i o r i t i z e d ? As an adult educator, Knowles (1980) considers the learner's involvement as c r u c i a l throughout the planning process and emphasizes: " I f one thing stands out about adult learning, i t i s that a self-diagnosed need for learning produces much greater motivation to learn than an e x t e r n a l l y diagnosed need" (p. 232). The Oncology Nursing Society (O.N.S) i s an organization based i n the United States whose standards f o r cancer care and education have been widely adopted, both formally and informally, by oncology nurses throughout North America. The O.N.S. (1982) standards for cancer patient education recognize that the learners should be involved throughout the educational process, but acknowledge that "health care needs i d e n t i f i e d by the nurse may be d i f f e r e n t from the needs and wants of the learner." The standards state e x p l i c i t l y that where differences e x i s t , the learners' "perceived needs must be considered and given p r i o r i t y i n the o v e r a l l educational plan" (Oncology Nursing Society, 1982, p. 6). Lauer, Murphy, and Powers (1982), i n reviewing the l i t e r a t u r e , observed that "No research was found on cancer patients* perceptions of s p e c i f i c informational need, nor have inv e s t i g a t i o n s examined the 4 nurse's perception of what cancer patients need to know, or v e r i f i e d the importance of t h i s information with the patient" (p. 11). Accordingly, they c a r r i e d out a study comparing nurse and patient perceptions of the learning needs of cancer patients. The r e s u l t s of t h i s study indicated that " s i g n i f i c a n t differences existed between nurses' and patients' perceptions of the learning needs of cancer patients" (p. 11). Collaboration between the patient, nurse, and physician as well i s e s s e n t i a l to accurately i d e n t i f y learning needs and plan e f f e c t i v e patient education (Long, 1984). The more agreement that e x i s t s i n the educator's and the learner's assessment of learning needs, the higher the p r o b a b i l i t y that e f f e c t i v e learning w i l l occur (Knowles, 1980). Theoretical Framework Adult learning theory formed the conceptual base for t h i s study. Malcolm Knowles (1980) uses the term andragogy, "the a r t and science of helping adults learn," to d i s t i n g u i s h adult education from pedagogy, which he defines l i t e r a l l y as "the a r t and science of teaching c h i l d r e n " (p. 43). Knowles views the andragogical process i n terms of the following phases: 1. E s t a b l i s h i n g a climate conducive to adult learning; 2. Creating a structure f o r p a r t i c i p a t i v e planning; 3. Diagnosing learning needs; 4. Formulating objectives or d i r e c t i o n s for learning; 5. Developing a design of a c t i v i t i e s ; 6. Implementing the a c t i v i t i e s ; 5 7. Rediagnosing learning needs (evaluation). Assumptions about Adult Learners Four assumptions are c e n t r a l to adult learning theory (Knowles, 1980). 1. The andragogical model regards the learner's self-concept as moving from dependence to s e l f - d i r e c t i o n as the i n d i v i d u a l matures. 2. Adults bring to learning s i t u a t i o n s t h e i r c o l l e c t i o n of l i f e experience, which can serve as a r i c h resource for learning and a foundation for the a c q u i s i t i o n of new knowledge and experience. 3. Readiness to learn i s enhanced when adults experience a need re l a t e d to the developmental tasks of t h e i r s o c i a l r o l e s . 4. Adult learners are oriented to problem- or performance-centered learning, focused on immediacy of a p p l i c a t i o n , rather than subject-centered learning. These four assumptions give r i s e to a number of implications for educational p r a c t i c e (Knowles, 1980). The p h y s i c a l , psychological and emotional climate should demonstrate respect for the adult learner as one who i s mature and s e l f - d i r e c t e d . This i s highlighted i n the processes of s e l f - d i a g n o s i s of learning needs, mutual planning and implementation of objectives and learning experiences, and i n evaluation of learning, which Knowles prefers to c a l l re-diagnosis of learning needs. Because adults bring a wide v a r i e t y of l i f e experiences to learning, adult educators should emphasize the use of e x p e r i e n t i a l techniques and p r a c t i c a l a p p l i c a t i o n . Group discussions provide a forum 6 where experiences can be shared and problem-solving f a c i l i t a t e d . Role playing and simulation exercises i n v i t e adult learners to r e l a t e new knowledge and s k i l l s to " r e a l l i f e " s i t u a t i o n s , f a c i l i t a t i n g t r a n s f e r of learning and maintenance of behaviour change. In addressing adults' readiness to learn, Knowles (1980) introduces the concept of the "teachable moment," where the demands of developmental tasks and the associated s o c i a l r o l e requirements r e s u l t i n a "peak" readiness (p. 51). Adult education programs should be i n step with the developmental tasks of the target group. The problem-centered or performance-centered o r i e n t a t i o n of adult learners has implications f o r the o r i e n t a t i o n of adult educators, the organization of educational programs, and the design of learning experiences. Knowles (1980) points out the need f o r adult educators to be attuned to the nature of problems and concerns of the learners; to organize programs according to problem rather than subject areas; and to design experiences which begin with "the problems and concerns that the adults have i n mind as they enter" (p. 54). Assumptions about Learning and Teaching In addition to the four assumptions about adult learners, three a d d i t i o n a l assumptions re l a t e d to learning and teaching are basic to the andragogical model. Knowles (1980) c i t e s the 1927 work of Edward Thorndike as "one of the great moments i n the h i s t o r y of adult education," since h i s was the f i r s t of a number of studies to demonstrate that "the basic a b i l i t y to learn remains e s s e n t i a l l y unimpaired throughout the l i f e span" (p. 55). A second assumption i s 7 that learning i s an i n t e r n a l process "described psychologically as a process of need-meeting and g o a l - s t r i v i n g by the learners" (p. 56). T h i r d l y , andragogy assumes that "there are superior conditions of learning and p r i n c i p l e s of teaching" (Knowles, 1980, p. 57). Knowles suggests a number of teaching p r i n c i p l e s which are superior i n t h e i r a b i l i t y to create optimum conditions f or adult learning. These p r i n c i p l e s are marked by the teacher's use of behaviours which f o s t e r active involvement of the learner at a l l points i n the process. Adult educators are advised to work with learners to involve them i n "ever-deeper processes of s e l f - d i a g n o s i s of t h e i r own needs for continued learning, i n formulating t h e i r own objectives f or learning, i n sharing r e s p o n s i b i l i t y for designing and carrying out t h e i r learning a c t i v i t i e s , and i n evaluating t h e i r progress toward t h e i r objectives" (Knowles, 1980, p. 56). Diagnosis of Learning Needs The diagnosis or assessment of learning needs i s considered to be a key element i n successful educational programs by both experts i n adult education and health care professionals (Knowles, 1980; Rankin and Duffy, 1983). Fundamental to an understanding of needs assessment i s a d e f i n i t i o n of learning need. Knowles (1980) defines a learning need as the gap between an i n d i v i d u a l ' s present l e v e l of competency and a higher l e v e l required f or e f f e c t i v e performance as defined by oneself, an organization, or society: the discrepancy between what i s and what ought to be. The pedagogical model places r e s p o n s i b i l i t y f o r assessing learning needs on the educator. Although adult learning theory 8 recognizes that there are things adults "ought" to learn, the s t a r t i n g point i n adult learning i s with the " f e l t " or perceived needs of the learner. Knowles suggests, therefore, that needs assessment procedures involve a number of sources i n i d e n t i f y i n g and p r i o r i t y - s e t t i n g of learning needs: the learners themselves, people involved i n "helping r o l e s " with the learners, the media, professional l i t e r a t u r e , and organizational or community surveys. He emphasizes, however, that the only r e l i a b l e and v a l i d source of information i n the assessment of f e l t or perceived needs i s the i n d i v i d u a l learner. Cancer i s a chronic i l l n e s s which requires those af f e c t e d to develop new coping s k i l l s to adjust to l i f e s t y l e changes brought about by the disease and i t s treatment (Johnson and Flaherty, 1980). Adult learning theory provides a framework for i d e n t i f y i n g and addressing the learning needs generated f o r the adult by the cancer experience. Andragogy's emphasis on beginning with the problems and concerns i d e n t i f i e d by the learner d i r e c t s health professionals to v a l i d a t e t h e i r perceptions of the learning needs of cancer patients r e c e i v i n g chemotherapy with the patients themselves. Thus, i t has provided d i r e c t i o n f o r s e l e c t i n g the method to address the problem i d e n t i f i e d for t h i s study. Statement of the Problem L i t t l e i s known about how nurses, physicians, and patients perceive the learning needs of cancer patients r e c e i v i n g chemotherapy. 9 More knowledge i s needed i n order to i d e n t i f y p o t e n t i a l discrepancies i n the perceptions of these three groups that could compromise the qu a l i t y of education f o r chemotherapy patients. Purpose of the Study The purpose of t h i s study i s to r e p l i c a t e and extend the findings of Lauer et a l . (1982) by addressing the following questions: 1. What are the differences i n perception of chemotherapy patients' learning needs among patients r e c e i v i n g chemotherapy, nurses providing teaching i n chemotherapy, and oncologists? 2. What are the differences i n p r i o r i t y of problem areas f o r patients r e c e i v i n g chemotherapy, nurses providing teaching i n chemotherapy, and oncologists? 3. What are the differences i n knowledge of problem areas as perceived by patients r e c e i v i n g chemotherapy, nurses providing teaching i n chemotherapy, and oncologists? 4. What are the differences i n perception of areas i n which chemotherapy patients want more information, as perceived by patients r e c e i v i n g chemotherapy, nurses providing teaching i n chemotherapy, and oncologists? 10 D e f i n i t i o n of Terms Learning need: The gap between an i n d i v i d u a l ' s present l e v e l of competency and a higher l e v e l required f o r e f f e c t i v e performance as defined by oneself, an organization, or society (Knowles, 1980). Perceived learning need: Learning need i d e n t i f i e d by responses to the r a t i n g and ranking scales of the Assessment of Learning Needs Questionnaire developed by Lauer, Murphy and Powers (1982). Patient: An i n d i v i d u a l who i s r e c e i v i n g f i r s t - l i n e chemotherapy on an out-patient basis f o r Hodgkin's or non-Hodgkin's lymphoma. Nurse: Registered nurse working i n the ambulatory care or i n - p a t i e n t unit of a major cancer r e f e r r a l centre, who provides teaching f or lymphoma patients r e c e i v i n g chemotherapy. Physician: A medical doctor who i s a s t a f f medical oncologist, a c l i n i c a l associate, or a senior medical oncology resident, and i s responsible f o r p r e s c r i b i n g and monitoring chemotherapy treatment f o r lymphoma patients. Limitations Patient p a r t i c i p a n t s were l i m i t e d to a convenience sample of out-patients i n one agency who were rec e i v i n g chemotherapy for Hodgkin's or non-Hodgkin's lymphoma, and s t a f f p a r t i c i p a n t s to nurses and physicians working with lymphoma patients i n the same agency. Another possible l i m i t a t i o n i s imposed by the content of the instrument, Assessment of Learning Needs Questionnaire (Lauer et a l . , 1982), which pre-defines a 11 l i s t of l e a r n i n g needs. This l i s t may not represent the f u l l range of needs which could be i d e n t i f i e d . 12 CHAPTER TWO Review of the L i t e r a t u r e John N a i s b i t t (1982) proposes new d i r e c t i o n s ahead f o r Western society which he c a l l s megatrends. Anthony (1985) has examined a number of these megatrends and t h e i r e f f e c t s on present and future patient education. With a s h i f t from an i n d u s t r i a l society to an information-giving society, patient education w i l l no longer be considered an optional extra but an e s s e n t i a l component of health care. S o c i a l and economic forces w i l l accelerate the s h i f t from i n s t i t u t i o n a l help to a s e l f - h e l p model, strengthening the need f or e f f e c t i v e programs to equip i n d i v i d u a l s and fa m i l i e s with r e q u i s i t e s k i l l s and knowledge. A t h i r d megatrend, the movement from representative to p a r t i c i p a t o r y democracy, has p a r t i c u l a r implications f o r the assessment of educational needs. Anthony notes that "patient education programs have often been a u t o c r a t i c a l l y established and administered" (p. 23). Increasingly, consumers must be consulted throughout the process and the " c r u c i a l question" becomes "What do you need to know?" (p. 23). The diagnosis of cancer represents a powerful threat to i n d i v i d u a l s and f a m i l i e s , and p r e c i p i t a t e s a need f or the development of new coping s k i l l s i n an on-qoing process of adjustment to l i v i n g with cancer (Fredette and Beattie, 1986; M i l l e r , Denner, and Richardson, 1976; M i l l e r and Nygren, 1978; Morra and Potts, 1980). Information-seeking i s one form of coping commonly addressed by patient education (Johnson and Flaherty, 1980; Lazarus and Folkman, 1984; Weisman and Worden, 1976). 13 Professional and popular l i t e r a t u r e suggests that patient education plays a key r o l e i n providing information, a l l e v i a t i n g anxiety, nurturing hope, enhancing self-esteem, and providing a sense of control over one's well-being and p a r t i c i p a t i o n i n one's care (Fiore, 1984; Fredette and Beattie, 1986; Lum, Chase, Cole, Johnson, Johnson, and Link, 1978; Morra and Potts,1980). An estimated 60% of i n d i v i d u a l s with cancer receive chemotherapy at some point i n the disease process (Brager and Yasko, 1984, p. x i ) . The chemotherapy experience presents formidable demands for both patient and caregiver. For the patient, chemotherapy may represent hope f or cure or control of the cancer, but the treatment brings with i t a myriad of p o t e n t i a l side e f f e c t s . These side e f f e c t s may range i n impact from minor discomforts to profound a l t e r a t i o n s i n body image and threatened s u r v i v a l (Williams, 1981). From the nursing perspective, Brager and Yasko (1984) assert that "Few other areas of nursing care require as much knowledge about the treatment, s k i l l i n assessment, t e c h n i c a l expertise, and a b i l i t y and desire to support the c l i e n t emotionally as does the nursing care f o r c l i e n t s undergoing chemotherapy" (p. x i ) . Faced with s o c i a l , economic, and c l i n i c a l pressures, oncology nurses recognize the increasing importance of t h e i r r e s p o n s i b i l i t y i n patient education (del Bueno, 1978; Hubbard and Seipp, 1985; Reed-Ash, 1984; Welch-McCaffrey, 1985; Winslow, 1976). Welch-McCaffrey (1986) suggests that "cancer patient education provides oncology nurses with an opportunity to demonstrate t h e i r unique and e s s e n t i a l contribution to health care outcomes," c i t i n g p a r t i c u l a r l y nurses' "assessment, i n s i g h t and problem-solving s k i l l s " (p. 30). 14 The following review of the l i t e r a t u r e addresses four questions r e l a t e d to the perceived learning needs of cancer patients r e c e i v i n g chemotherapy: 1. How are p r i n c i p l e s of adult learning theory r e l a t e d to needs assessment r e f l e c t e d i n patient education l i t e r a t u r e ? 2. What are the learning needs of cancer patients as perceived by health care professionals? 3. What do cancer patients perceive t h e i r learning needs to be? 4. How do patients' and professionals' perceptions of patient needs compare? Adult Learning Theory and Patient Education L i t e r a t u r e What impact has adult learning theory had on patient education? Are p r i n c i p l e s r e l a t e d to the assessment of patients' learning needs r e f l e c t e d i n patient education l i t e r a t u r e ? Adcock (1980) observes: "Rarely are the patients allowed to decide what t h e i r own educational goals are, what the education w i l l consist of, or how t h e i r education w i l l be accomplished. In most cases i t i s the health care workers who assess patients' needs and decide the goals and how they should be met" (p.. 38). This i s hardly a d e s c r i p t i o n of the p r i n c i p l e s of andragogy i n a c t i o n . Whether or not t h i s r e f l e c t s the r e a l world of p r a c t i c e may be subject to debate, but the patient education l i t e r a t u r e gives credence to the importance of the adult learner's a c t i v e involvement i n i d e n t i f y i n g learning needs. Hermann (1985) urges health professionals to provide patients and f a m i l i e s with t r u t h f u l and c l e a r information that addresses the s p e c i f i c concerns and needs of the i n d i v i d u a l s . Adult learning theory states that adults are performance-centered i n 15 t h e i r learning, i d e n t i f y i n g needs for knowledge and s k i l l s to help them i n t h e i r d a i l y l i v e s . Acknowledging t h i s , M i l l e r (1985) points out the necessity f o r health professionals to ask "Is i t 'nice to know' or 'necessary to know'?" from the patient's perspective (p. 801). Wise (1979) suggests that the adult educational process involves a t r a n s f e r of power from the health care professional to the learner, a t r a n s f e r which may be threatening to some care providers. However, she underlines the importance of patient education i n health care, and states i t i s imperative for professionals to at l e a s t attempt to work within the i n d i v i d u a l ' s value system. Rankin and Duffy (1983) advocate a model for patient education based on negotiation of goals between patient and provider. Central to t h i s model i s not only the provider's assessment of the patient and family needs, but also an understanding of the patient's and family's assessment of t h e i r own learning needs. This c o l l a b o r a t i v e approach to patient education i s recommended by others i n the f i e l d (Narrow, 1979; Ryan-Morrell, 1985). Bower (1985) believes that an understanding of the patient's perception i s fundamental to e f f e c t i v e education: A mechanism to e l i c i t patients' perceptions of t h e i r health problems and the preferred course of action becomes e s s e n t i a l . . . The important task i s to determine i n some way, the patient's perceptions of the health problems and the recommended regimens (p. 97). 16 Health Professionals' Perception of Patient Needs A v a r i e t y of patient education materials e x i s t to meet the needs of i n d i v i d u a l s and f a m i l i e s f a c i n g a diagnosis of cancer. Information prepared f o r patients with Hodgkin's disease includes a review of the disease and i t s incidence, staging procedures, diagnostic t e s t s and t h e i r purposes, how radiotherapy and chemotherapy are used, and p o t e n t i a l side e f f e c t s of treatment (Hagan, 1985; Jacobs, 1979). Jacobs (1979) emphasizes c e r t a i n aspects of treatment, such as the s i g n i f i c a n c e of low blood counts, s u s c e p t i b i l i t y to i n f e c t i o n , and the e f f e c t of treatment modalities on sexual functioning and f e r t i l i t y . Krumm, Vannatta and Sanders (1979) implemented a group approach f o r teaching chemotherapy patients and t h e i r f a m i l i e s . The sessions were designed to provide information about the action and side e f f e c t s of chemotherapy, to i d e n t i f y s t r a t e g i e s to minimize side e f f e c t s , and to provide a forum for p a r t i c i p a n t s to share knowledge, f e e l i n g s , and experiences re l a t e d to the treatment. P a r t i c i p a n t s i n the group sessions scored higher on a t e s t of chemotherapy side e f f e c t s and ways to minimize them than did those i n the c o n t r o l group who received no structured information. Crosson (1984) i d e n t i f i e d several learning needs which must be met i n order for patients to make informed choices regarding treatment. Teaching should address the following areas: - r a t i o n a l e f or the suggested therapy as the treatment of choice; - f a c t s about how the treatment w i l l a f f e c t the cancer; -time-table and sequence of events; 17 - p o t e n t i a l side e f f e c t s , body a l t e r a t i o n s , or l i f e s t y l e changes and how to best cope with them; -prognosis; -techniques or routines needed f o r continuing care (p. 21). The Oncology Nursing Society has developed standards f o r chemotherapy patient teaching, which address content concerning diagnosis and disease process, treatment choice and r a t i o n a l e , therapeutic goal, side e f f e c t s and s e l f - c a r e techniques, and treatment plan and associated procedures. These outcome standards address the cognitive, a f f e c t i v e , and psychomotor domains of learning (Sommerville, 1985). Dodd has done extensive work i n the area of education for cancer chemotherapy patients (Dodd and Mood, 1981; Dodd, 1982a, 1982b, 1983, 1987). In a two-part study, Dodd and Mood (1981) surveyed chemotherapy patients to determine how much information about t h e i r drugs and po t e n t i a l side e f f e c t s they retained. In the f i r s t study, patients were asked to name the drugs they were r e c e i v i n g from a l i s t of drugs used i n various chemotherapy protocols. Seventy percent of patients were unable to recognize any of t h e i r drugs. When asked to i d e n t i f y p o t e n t i a l side e f f e c t s of t h e i r chemotherapy from a l i s t of 30 standardized side e f f e c t s , patients c o r r e c t l y selected an average of 3.56 side e f f e c t s out of an average of 11.56 possible. They i n c o r r e c t l y a t t r i b u t e d an average of 2.13 side e f f e c t s to the chemotherapy. The inves t i g a t o r s noted that a l l subjects should have selected i n f e c t i o n and bleeding, two p o t e n t i a l l y l e t h a l side e f f e c t s . However, only one-third of patients recognized i n f e c t i o n as a p o t e n t i a l side e f f e c t and no one i d e n t i f i e d 18 p o t e n t i a l f o r bleeding. The purpose of the second study was to evaluate the effectiveness of an information v i s i t by the nurse following informed consent i n enhancing r e c a l l of drug names, possible side e f f e c t s , l e t h a l side e f f e c t s and purpose of treatment (Dodd and Mood, 1981). During the information v i s i t , the experimental group received a written and verbal review of information given during the informed consent procedure concerning chemotherapy and r e l a t e d p o t e n t i a l side e f f e c t s . The con t r o l group also received a 20-minute v i s i t from the nurse, during which disease-related content was discussed. Three to four weeks l a t e r , the experimental group r e c a l l e d s i g n i f i c a n t l y more drug names, p o t e n t i a l side e f f e c t s , l e t h a l side e f f e c t s , and purposes f o r t h e i r chemotherapy than did the control group. In reporting t h e i r findings, Dodd and Mood (1981) offered a thoughtful c r i t i q u e of informed consent procedures, concluding: ...the i n t e l l i g e n t p a r t i c i p a t i o n of the patient i n his/her own care cannot occur without knowledge. I t i s the r e s p o n s i b i l i t y of the health care professionals to guarantee some minimal l e v e l s of knowledge i n a l l patients (p. 318). Dodd (1982a) r e p l i c a t e d the l a t t e r study, extending i t to include four experimental conditions: 1) verbal and written drug information, 2) verbal and written presentation of side e f f e c t management techniques (SEMT), 3) combination of drug information and SEMT information, and 4) a control group. Again, patients who received drug information alone or i n combination with SEMT information demonstrated s i g n i f i c a n t l y greater r e c a l l of drug names and p o t e n t i a l side e f f e c t s . 19 Dodd (1982b) continued her work with chemotherapy patients i n a study assessing s e l f - c a r e behaviours used by t h i s group. P a r t i c i p a n t s were asked to report the chemotherapy side e f f e c t s they experienced, rate t h e i r severity on a f i v e - p o i n t scale, and describe the s e l f - c a r e actions they took to a l l e v i a t e the side e f f e c t s . The researcher a l s o asked p a r t i c i p a n t s to name the sources of information for the s e l f - c a r e behaviours they had used. P a r t i c i p a n t s reported an average of 7.69 side e f f e c t s , of which 3.13 could be c o r r e c t l y a t t r i b u t e d to chemotherapy. An average of 0.81 s e l f - c a r e behaviours were i n i t i a t e d by p a r t i c i p a n t s , most frequently for nausea and vomiting, alopecia and constipation. Sources of s e l f - c a r e information were p r i m a r i l y the patients themselves, followed i n order of frequency by the physician, family, and f i n a l l y , the nurse. Dodd's (1982b) findings demonstrate patients' l i m i t e d knowledge of s e l f - c a r e measures, and a lack of information from nurses and physicians. B u i l d i n g on these fi n d i n g s , Dodd (1983) studied the effectiveness of nursing interventions to enhance s e l f - c a r e for chemotherapy side e f f e c t s . Patients were assigned to one of four groups: those r e c e i v i n g information about t h e i r drugs and p o t e n t i a l side e f f e c t s ; those r e c e i v i n g information about management techniques for 44 side e f f e c t s (SEMT); those r e c e i v i n g both drug and SEMT information; and a cont r o l group. Dodd found that patients who received SEMT information "reported i n t i a t i n g more s e l f - c a r e behaviours with a higher degree of perceived effectiveness than d i d the patients who had not received SEMT. The informed patients i n i t i a t e d s e l f - c a r e behaviours before side e f f e c t s became persistent and severe" (p. 63). 20 Dodd (1987) concludes: The implications for nursing and patient and family teaching are obvious. We need to teach patients and t h e i r f a m i l i e s about t h e i r treatment and how to manage side e f f e c t s . . . Nurses need to encourage t h i s involvement by providing information i n a comprehensive and understandable manner (p. v i i i ) . Hopkins (1986) studied information-seeking practices of women rec e i v i n g chemotherapy for breast cancer. Her data demonstrated a negative r e l a t i o n s h i p between both age and disease s e v e r i t y and information-seeking, but revealed no s i g n i f i c a n t r e l a t i o n s h i p s between information-seeking and adaptational outcome measures of mood states and l e v e l of functioning. She administered the Chemotherapy Knowledge Questionnaire developed by Dodd and Mood (1981), and found that p a r t i c i p a n t s showed knowledge d e f i c i t s r e l a t e d to the chemotherapy's purpose and side e f f e c t s (some p o t e n t i a l l y l e t h a l , such as bleeding or i n f e c t i o n ) . Of encouragement to nurses i s the f i n d i n g that they were a frequent source of both verbal and written information for the patients i n t h i s study. Hopkins recommended that nurses should continue to teach patients how to manage p o t e n t i a l chemotherapy side e f f e c t s , and that i n d i v i d u a l differences i n the preference for treatment information should be recognized. 21 Patients' Perceived Learning Needs Recognizing that learning i s enhanced when i n d i v i d u a l s receive information that they perceive as needed, Dodge (1969) studied patients' perceptions of t h e i r cognitive needs, and the r e l a t i o n s h i p of personal and s i t u a t i o n a l factors to t h e i r perceptions. The personal factors studied were age, sex, and educational background. S i t u a t i o n a l factors were nature of involvement (medical or surgical) and period of involvement (long-term or short-term). Patients gave the highest ranking i n importance to information r e l a t e d to diagnosis, the etiology of t h e i r conditions, and the long and short-term e f f e c t s on t h e i r futures. They were also concerned about knowing the length of h o s p i t a l i z a t i o n , the type and purpose of care needed, and s e l f - c a r e a c t i v i t i e s to hasten t h e i r recovery. Dodge (1969) noted that i n general, "patients are p a r t i c u l a r l y concerned with r e c e i v i n g the kinds of information which would enable them to plan r e a l i s t i c a l l y f o r t h e i r immediate and long-range l i v e s " (p. 509). Differences i n the medical and s u r g i c a l groups and the short-term and long-term groups were evident. For medical patients, information about medications and s e l f - c a r e was of p a r t i c u l a r importance. Surgical patients expressed more concern about t o t a l time involvement, a c t i v i t y r e s t r i c t i o n s , and achievement of sub-goals. The differences i n the short-term and long-term groups r e f l e c t e d concerns r e l a t e d to adjusting to chronic i l l n e s s . Long-term patients expressed a need f o r more de t a i l e d information on r o l e s i n s e l f - c a r e and the purpose and e f f e c t s of medications. 22 Dodge (1969) found the e f f e c t s of age, sex, and education were re l a t e d to r o l e s held, developmental tasks, and accumulated past experiences. Patients with l e s s than high school graduation requested information which "seemed to r e f l e c t a desire for assurance that (they) would be well again, rather than a r e a l desire f o r f a c t u a l information" (p. 511). In contrast, more highly educated patients requested s p e c i f i c content and displayed more o b j e c t i v i t y and awareness of cause and e f f e c t . Using a c r i t i c a l i n cident technique, Pender (1974) studied medical-s u r g i c a l patients' perceptions of information-giving a c t i v i t y i n a h o s p i t a l s e t t i n g . One hundred and sixty-two patients from a v a r i e t y of age, educational, and diagnostic groups p a r t i c i p a t e d i n t h i s study. They were asked to r e l a t e one conversation during the current h o s p i t a l i z a t i o n i n which they learned the most about t h e i r present health problem. The researcher also asked s p e c i f i c a l l y with whom the conversation was held, who i n i t i a t e d the conversation, and whether audiovisual aids were used. P a r t i c i p a n t s were also asked to " i d e n t i f y from a l i s t of t o p i c s those areas about which they needed more information before leaving the h o s p i t a l " (p. 264). One hundred and f i v e patients (76.1%) had the most informative conversations with a physician, 24 (17.4%) with a nurse. Pender (1974) compared conversations to i d e n t i f y content differences and found that physicians gave more information about diagnosis, while nurses more frequently discussed treatment side e f f e c t s and treatment-related nursing care. Of i n t e r e s t was the f i n d i n g that patients with a high school 23 education or above received explanations of treatment procedures more frequently than did le s s educated patients. Pender (1974) warns nurses to be a l e r t to the information needs of i n d i v i d u a l s with a low l e v e l of education, since they may be overlooked. P a r t i c i p a n t s reported needs f o r a d d i t i o n a l information about s e l f -care a f t e r discharge, the e f f e c t of t h e i r i l l n e s s on t h e i r d a i l y l i v e s , prevention of future i l l n e s s , and possible complications of the present i l l n e s s . Pender (1974) recommends that nurses provide patients "with the information and support that w i l l enable them to leave the dependent ro l e of patient and care for themselves as independently as possible within the home and community s e t t i n g " (p. 267). Mcintosh (1976) interviewed 74 h o s p i t a l i z e d patients with diagnosed but undisclosed malignancy about t h e i r awareness of and desire for information about t h e i r condition. The p a r t i c i p a n t s were i n i t i a l l y informed about t h e i r disease and treatment using euphemisms such as "nasty c e l l s , " "suspicious c e l l s , " " i t might become more a c t i v e , " or " i t might have have become dangerous i f l e f t " (p. 300). At the time of admission, 88% of the patients reported that they knew or suspected that they had cancer. Of these patients, 75% wished or required no information on t h e i r diagnosis, and only 14% wanted information concerning t h e i r prognosis. In addition, "...no patient wanted to know whether, or when, the i l l n e s s was l i k e l y to prove f a t a l , " but did wish to know "whether or not the disease had been overcome or contained" (p. 301). Patients were able to confirm t h e i r diagnosis i n three possible ways: by the treatment they received f o r t h e i r disease (such as surgery, radiotherapy); by the f a c t that t h e i r condition was not given an 24 e x p l i c i t and recognizable diagnosis; and by t h e i r own deductions based on previous information provided by t h e i r doctors-Mcintosh (1976) suggested that patients preferred to l i v e with uncertainty regarding diagnosis and prognosis rather than r i s k l o s i n g hope. The decision of patients to seek the truth about t h e i r condition was based on t h e i r perceptions of cancer i n general and t h e i r own condition i n p a r t i c u l a r . Those patients who preferred not to know either regarded cancer as being synonymous with death or considered that t h e i r own condition was a r e l a t i v e l y serious example of the disease (p. 302). Based on the f i n d i n g s , Mcintosh (1976) concluded that the methods of communication used i n the study enabled patients to r e t a i n hope, and allowed them to decide how much information they wished, and regulate communication on a more e x p l i c i t l e v e l . He asserts that "routinely informing a l l patients would not only cause considerable d i s t r e s s to many but, given that most patients are able to obtain the information they want independently of having i t formally communicated to them, i t would a l s o be l a r g e l y unnecessary" (p. 303). Noting that "the extent to which patients prefer to become w e l l -informed p a r t i c i p a n t s i n t h e i r own medical care i s unknown," C a s s i l e t h , Zupkis, Sutton-Smith and March (1980) studied the information and p a r t i c i p a t i o n preferences of 256 cancer patients. In contrast to Mcintosh's (1976) fin d i n g s , the majority of p a r t i c i p a n t s i n t h i s study preferred a c t i v e p a r t i c i p a t i o n i n decisions about t h e i r care and 25 d e t a i l e d information regarding t h e i r disease and treatment. Over ha l f of the patients considered information items re l a t e d to treatment goals, side e f f e c t s , diagnosis, l i k e l i h o o d of cure, extent of disease involvement, what the treatment does ins i d e the body, and on-going progress as "absolutely necessary" (p. 834). C o r r e l a t i o n of expressed preferences and demographic variables revealed that younger patients were more l i k e l y to conform to "the contemporary standard of informed and a c t i v e involvement" (p. 832). Preferences were independent of sex, inpatient-outpatient status, and performance status. The i n v e s t i g a t o r s also noted that patients who preferred a c t i v e involvement and as much information as possible were more hopeful, suggesting a r o l e f o r patient education i n f o s t e r i n g hope. Johnson interviewed cancer patients and family members to determine t h e i r perceived needs i n learning to l i v e with cancer (Johnson and Blumberg, 1984). P a r t i c i p a n t s i n her study expressed learning needs i n the following ten areas: 1. acquiring accurate and current information on the disease process and treatment plan; 2. accepting and readjusting to changes i n body image and s e l f -concept; 3. learning how to express f e e l i n g s about having the disease; 4. readjusting major r e s p o n s i b i l t i e s and goals i n the face of an uncertain future; 5. determining the impact that the i l l n e s s w i l l have on the f i n a n c i a l status of the family; 26 6. r e i n f o r c i n g basic l i f e philosophy, i . e . , s p i r i t u a l needs; 7. e s t a b l i s h i n g and maintaining a sense of hope; 8. developing meaningful interpersonal r e l a t i o n s h i p s with family, friends and medical personnel; 9. f i n d i n g out where resources are located that can give assistance; 10. recognizing myths and untruths about the disease and i t s proposed treatments. (Johnson and Blumberg, 1984, pp. 15-16). Based on t h i s needs assessment, Johnson (1982) developed a structured patient education program c a l l e d "I Can Cope." The program consisted of eight sessions and covered s i x t o p i c areas: learning about the disease, coping with d a i l y health problems, communicating with others, l i k i n g yourself, l i v i n g with l i m i t s , and h e l p f u l resources. Johnson evaluated the program's e f f e c t on p a r t i c i p a n t s ' state anxiety l e v e l s , sense of meaning and purpose i n l i f e , and knowledge of cancer. Age, sex and pre-course scores were used to p a i r i n d i v i d u a l s , who were then assigned randomly to the treatment group ("I Can Cope" pa r t i c i p a n t s ) or the control group, who received no structured learning experience. Post-test scores indicated that the structured educational program s i g n i f i c a n t l y reduced state anxiety l e v e l s and increased knowledge about cancer and sense of purpose i n l i f e (Johnson, 1982). Flaherty shared her perspective as a nurse and a cancer patient and expressed a need for consistent, accurate information which would help her to care for h e r s e l f and maintain a sense of control (Johnson and Flaherty, 1980). She asserts that i n providing patient education, health care professionals are " o f f e r i n g patients the most precious of human commodities— respect. They are saying that patients are people 27 who have r i g h t s , who deserve a say i n t h e i r health, and that they, the professionals, are w i l l i n g to help t h e i r patients to learn, rather than just t e l l them" (Johnson and Flaherty, 1980, p. 65). Patients, f a m i l i e s , and s t a f f members were consulted i n a project reported by Carey and Jevne . (1986). An information package was developed to meet the educational needs of post-mastectomy patients r e c e i v i n g adjuvant chemotherapy or r a d i a t i o n and t h e i r f a m i l i e s . The l i s t of i d e n t i f i e d learning needs included the following t o p i c areas: 1. breast cancer, the disease (included topics such as cause, treatment methods, metastasis); 2. coping with breast cancer (feelings and emotions, family r e l a t i o n s h i p s , sexuality, coping s t r a t e g i e s ) ; 3. r a d i a t i o n therapy, chemotherapy (action, side e f f e c t s , s e l f - c a r e ) ; 4. patient r i g h t s and r e s p o n s i b i l i t i e s (informed consent, c o n f i d e n t i a l i t y ) . Derdiarian (1987) found no prospective data a v a i l a b l e describing the informational needs of recently diagnosed cancer patients. Recognizing the need for "a systematic account of the nature, scope, and development of such needs over time," she developed a t h e o r e t i c a l framework to serve as a foundation f o r the concept of informational needs (p. 108). Derdiarian's framework integrates Lazarus's theory of coping, appraisal of actual or p o t e n t i a l harm, and information-seeking with Maslow's theory of needs and hierarchy of ph y s i c a l , psychological, and s o c i a l s u r v i v a l needs. Using t h i s theory base and previous research fi n d i n g s , Derdiarian (1986) developed a semi-structured interview instrument, the Derdiarian 28 Informational Needs Assessment (DINA). With t h i s instrument, she studied the informational needs of s i x t y newly-diagnosed cancer patients. P a r t i c i p a n t s were asked to i d e n t i f y and rate the importance of t h e i r needs for information i n disease, personal, family, and s o c i a l categories. Patients gave top p r i o r i t y to information about disease (including treatment, prognosis, diagnosis and testing) followed by information concerning personal needs, such as p h y s i c a l and psychological well-being, job and career, and plans and goals. The family and s o c i a l r e l a t i o n s h i p s categories ranked t h i r d and fourth r e s p e c t i v e l y . Within the categories, patients attached s i g n i f i c a n t l y more importance to treatment and prognosis than to diagnosis and t e s t s . They i d e n t i f i e d a greater need f o r information r e l a t e d to p h y s i c a l w e l l -being than other personal sub-categories. Patients wanted more information about job/career r e l a t i o n s h i p s than l e i s u r e and s p e c i a l i n t e r e s t r e l a t i o n s h i p s . In the same study, Derdiarian (1986) studied the r e l a t i o n s h i p between information needs and person-related and s i t u a t i o n - r e l a t e d v a r i a b l e s . She found minor d e s c r i p t i v e d i f f e r e n c e s . As might be anticipated, young adults and middle adults needed more information about r e l a t i o n s h i p s with spouses and parents and job/career r e l a t i o n s h i p s than did older adults. Women i n t h i s study wanted more information about prognosis, psychological well-being, and s i b l i n g r e l a t i o n s h i p s , while men placed higher p r i o r i t y on information r e l a t e d to diagnostic t e s t s , physical well-being and spouses. Commenting on her findings, Derdiarian (1986) concluded: 29 The h ierarchy of response counts and importance values are (s ic ) congruent with the t h e o r e t i c a l assumptions that the relevance of informat ion needed may be re la ted to the amount, imminence, and l i k e l i h o o d of a n t i c i p a t e d harm (Lazarus, 1966) as we l l as to the s u r v i v a l needs of pa t ien ts (Maslow, 1954) (p. 280). Comparison of P a t i e n t s ' and P r o f e s s i o n a l s ' Percept ion of Pat ien t Needs The percept ions of both the learner and teacher in f luence the l e a r n i n g process . P o i n t i n g out the uniqueness of i n d i v i d u a l experiences and world view, Per reau l t (1985) argues that "achiev ing perceptual c l a r i t y i s fundamental to q u a l i t y nurs ing care" (p. 28) . She advocates a greater understanding of the p h y s i o l o g i c a l , p s y c h o l o g i c a l , s o c i o l o g i c a l , and behavioural components of percept ion and emphasizes the importance of t h e i r a p p l i c a t i o n to develop s k i l l i n accura te ly assess ing our own percept ions and those of pat ients and co l l eagues . Per reau l t mainta ins: Assess ing f o r perceptual accuracy and s t r i v i n g fo r mutual v e r i f i c a t i o n , although h igh ly valued i n theory, have not found t h e i r way i n t o the c l i n i c a l s e t t i n g with any consistency (p. 31). Research comparing s t a f f and pat ient percept ions would assess the p o s s i b l e accuracy of P e r r e a u l t ' s statement. In a study of percept ions of s t r e s s f u l events assoc ia ted with h o s p i t a l i z a t i o n , V o l i c e r (1974) found that both h o s p i t a l i z e d and n o n - h o s p i t a l i z e d p a r t i c i p a n t s rated inadequate explanat ion of treatment and diagnosis as h igh ly s t r e s s f u l . I n t e r e s t i n g l y , the n o n - h o s p i t a l i z e d sample inc luded phys ic ians and 30 nurses as we l l as non-medical persons. Johnson (1983) has c a r r i e d out research on the r o l e of sensory informat ion i n a s s i s t i n g pa t ien ts to cope with s t r e s s f u l events such as s u r g i c a l and d iagnost ic procedures. She concluded that d e s c r i p t i v e informat ion concerning t y p i c a l p h y s i c a l sensat ions , us ing concrete terms, a s s i s t e d p a t i e n t s ' use of e x i s t i n g coping techniques. Th is r e s u l t e d i n a more rap id re turn to usual a c t i v i t i e s . Johnson (1983) warns heal th care p r o f e s s i o n a l s : Sensory informat ion that focuses on the p a t i e n t ' s view of the s i t u a t i o n i s d i s t i n c t i v e l y d i f f e r e n t from informat ion that focuses on the view of the heal th care p rov ider . The research has shown that the d i f f e r e n c e i s important to p a t i e n t s ' coping (p.32) . Recognizing the existence of many communication b a r r i e r s between pa t ien ts and heal th care personne l , Byrne and Edeani (1984) s tudied knowledge of medical terminology i n a sample of h o s p i t a l p a t i e n t s . They found that "pat ients understand medical terms at a ( s i g n i f i c a n t l y ) lower rate than the heal th p r o f e s s i o n a l s expect" (p. 180). The i m p l i c a t i o n s of t h i s p o t e n t i a l b a r r i e r to e f f e c t i v e communication become i n c r e a s i n g l y s i g n i f i c a n t as more r e s p o n s i b i l i t y r e s t s with pat ients and fami ly members to be wel l - in formed and maintain s e l f - c a r e p r a c t i c e s i n the home s e t t i n g . Nehemkis, Gerber , and Charter (1984) i d e n t i f i e d s i g n i f i c a n t d i f f e r e n c e s between pat ient and s t a f f percept ions of l i f e changes assoc ia ted with a d iagnosis of cancer . Twenty-six males with advanced cancer , f i v e o n c o l o g i s t s , and 10 nurs ing s t a f f were asked to rank 14 areas of loss or l i f e change i n order of personal importance to cancer 31 p a t i e n t s . F indings i n d i c a t e d that the phys ic ians ranked cancer pain as more important than d id the pat ient group, but underrated the importance of d i s r u p t i o n of hobbies and l e i s u r e a c t i v i t i e s . In comparison to the p a t i e n t s , nurs ing s t a f f s i g n i f i c a n t l y overrated the importance of changes i n p h y s i c a l appearance, and underrated the importance of p a t i e n t s ' i n a b i l i t y to complete rout ine household chores . The i n v e s t i g a t o r s a l s o noted that p a t i e n t s ' responses ind ica ted no "one item or c l u s t e r of items as having o v e r r i d i n g importance i n t h e i r l i v e s " (Nehemkis et a l . , 1984, p. 46) . They concluded that pa t ien ts with advanced cancer should be assessed "on an i n d i v i d u a l b a s i s , by a s t a f f as unencumbered as p o s s i b l e by i t s own p r i o r i t i e s and preoccupat ions of what should be of most importance to t h e i r pa t ien ts" (p. 46) . In reviewing the l i t e r a t u r e i n the f i e l d of cancer and chemotherapy, Todres and Wojtiuk (1979) noted two major themes: the p h y s i c a l e f f e c t s and management of chemotherapy, and the emotional impact on the pat ient and fami ly . They surveyed 67 pat ients who had rece ived chemotherapy wi th in the previous year to explore the p a t i e n t s ' percept ions of the e f f e c t s of chemotherapy. The p a r t i c i p a n t s reported negative s i d e - e f f e c t s i n areas such as moodiness, p h y s i c a l s t rength , and o v e r a l l general h e a l t h , which compromised job performance, working i n the home, fami ly r e l a t i o n s h i p s , and sexual a c t i v i t y . Despite the negative e f f e c t s , ha l f of the pa t ien ts perceived an improvement i n t h e i r o v e r a l l h e a l t h . The researchers acknowledge the d i f f i c u l t y i n separat ing treatment s i d e - e f f e c t s from symptoms re la ted to disease p r o g r e s s i o n , but po in t out that pa t ien ts perceive negative s ide e f f e c t s to be assoc ia ted with chemotherapy. They recommend that pa t ien ts be 32 infomed of both p h y s i c a l and emotional s i d e - e f f e c t s of chemotherapy. Todres and Wojtiuk (1979) s ta te that t h e i r f ind ings "demonstrate that cancer pa t ien ts r e c e i v i n g a regimen of chemotherapy requi re emotional s u p p o r t . . . There fore , the p r o v i s i o n of emotional support must become a primary cons idera t ion fo r the chemotherapy pat ient" (p. 285). Undoubtedly, emotional support i s a r e q u i s i t e fo r h o l i s t i c nurs ing ca re . However, p l a c i n g the emphasis upon emotional support i n a s s i s t i n g pa t ien ts to deal with the e f f e c t s of chemotherapy seems unwarranted on the b a s i s of t h e i r f i n d i n g s and requi res fur ther v a l i d a t i o n from pa t ien ts and fami ly members. Jennings and Muhlenkamp (1981) s tud ied 28 h o s p i t a l i z e d oncology pa t ien ts and t h e i r c a r e - g i v e r s to determine the congruence between c a r e -g i v e r s ' assessments of the p a t i e n t s ' l e v e l s of anx ie ty , h o s t i l i t y , and depress ion , and the p a t i e n t s ' s e l f - r e p o r t e d l e v e l s . The pat ient p a r t i c i p a n t s completed the M u l t i p l e Ad jec t i ve A f f e c t Check L i s t (MAACL) and a den ia l t e s t . Care -g ive r p a r t i c i p a n t s who were invo lved i n the care of a p a r t i c u l a r pa t ient p a r t i c i p a n t completed the MAACL as they be l ieved the pa t ien t would answer i t . Care -g ive rs i n t h i s study inc luded r e g i s t e r e d nurses , nurs ing a s s i s t a n t s , nursing s tudents , and p h y s i c i a n s . F ind ings ind ica ted that c a r e - g i v e r s perceived pa t ien ts to be f e e l i n g " s i g n i f i c a n t l y worse than the pat ients reported f e e l i n g fo r a l l three a f f e c t i v e s t a t e s : anx ie ty , h o s t i l i t y , and depression" (p. 488). The researchers found no c o r r e l a t i o n between l e v e l s of den ia l measured and the pa t ien ts* s e l f - r e p o r t e d f e e l i n g s t a t e s , and therefore r u l e d out the p o s s i b i l i t y that the p a t i e n t s ' use of den ia l accounted fo r the discrepancy i n s t a f f and pa t ien t percept ions . Jennings and 33 Muhlenkamp warn that inaccurate assessment of p a t i e n t s ' a f f e c t i v e s ta tes " i s very l i k e l y to r e s u l t i n f e e l i n g s of i s o l a t i o n and l o s s of i d e n t i t y on the par t of the pa t ien t" (p. 489). Larson (1986) i d e n t i f i e s c a r i n g as n u r s i n g ' s c e n t r a l f o c u s , but warns " . . . c a r i n g , to have meaning, must be perceived as being meaningful to both the enacter and the r e c i p i e n t " (p. 86) . Understanding p a t i e n t s ' percept ions of important nurse c a r i n g behaviors i s c r i t i c a l (Larson, 1984). Using a card sor t technique, Larson (1984) s tud ied 57 cancer p a t i e n t s ' percept ions of c a r i n g . Subjects ranked 50 behav iora l items i n s i x sub -sca les of c a r i n g according to t h e i r importance, and reported i n d i c a t o r s of c l i n i c a l competence such as "monitoring and fo l low ing through" and "being a c c e s s i b l e " as most important (p. 49) . Larson (1986) used the same instrument to obtain nurses ' percept ions of nurse c a r i n g behav iors . She sampled 57 nurses c a r i n g fo r cancer p a t i e n t s . These nurses i d e n t i f i e d l i s t e n i n g , touch ing , and t a l k i n g as being most important i n making pat ients f e e l cared f o r , h i g h l i g h t i n g the value nurses p lace on the a t t i t u d i n a l component of c a r i n g . Larson (1986) po ints out tha t , s ince pa t ien ts and nurses d i f f e r i n t h e i r percept ions of c a r i n g , "nurses c a r i n g fo r cancer p a t i e n t s , i n p a r t i c u l a r , should v e r i f y with t h e i r pa t ien ts that t h e i r intended c a r i n g i s being perce ived as car ing" (Larson, 1986, p. 91) . Mayer (1987) c a r r i e d out a r e p l i c a t i o n of L a r s o n ' s study, us ing 28 oncology nurses and 54 cancer p a t i e n t s . She found a s i g n i f i c a n t c o r r e l a t i o n o v e r a l l between p a t i e n t s ' and nurses ' percept ions of ca r ing behav iors , but noted that d i f f e rences ex is ted between the two groups' choice of the most and l e a s t important behaviors . As i n L a r s o n ' s study 34 (Larson, 1984; Larson 1986), nurses ranked l i s t e n i n g to the pat ient as most important , while the pat ients p laced top p r i o r i t y on i n d i c a t o r s of c l i n i c a l competence such as "knows how to give shots , I . V . ' s , e t c . " (Mayer, 1987, p. 51) . Mayer noted that "pat ients appear to value the ins t rumenta l , t e c h n i c a l c a r i n g s k i l l s more than nurses do, while nurses rank the expressive behaviours higher" (p. 51). On the bas is of her f i n d i n g s and those of Larson (1984,1986), Mayer concluded: "Pat ients may not be open or recept ive to the expressive c a r i n g behaviors u n t i l bas ic p h y s i c a l needs have been met through instrumental a c t i v i t i e s " (p. 51). D i s p a r i t i e s between p a t i e n t s ' and nurses ' percept ions of the chemotherapy experience were noted by F e r n s l e r (1986) i n a d e s c r i p t i v e study comparing perce ived s e l f - c a r e d e f i c i t s experienced by cancer pa t ien ts r e c e i v i n g chemotherapy i n an outpat ient s e t t i n g . Pa t ien ts reported more s e l f - c a r e d e f i c i t s than d id the nurses, with over h a l f the responses addressing p h y s i c a l needs f o r a c t i v i t y and r e s t (36%) and food and water (26.7%). The nurses , however, perceived more s e l f - c a r e d e f i c i t s i n areas concerning a f f e c t i v e s ta tes and s o c i a l i n t e r a c t i o n . F e r n s l e r concluded that the nurses i n t h i s study "d id not perce ive the extent to which pa t ien ts requi red ass is tance" (p. 50) . Th is study under l ines the importance of nurses v a l i d a t i n g percept ions with pat ients to obta in greater agreement between pat ient and nurse percept ions . Lauer , Murphy, and Powers (1982), i n reviewing the l i t e r a t u r e , observed that "No research was found on cancer p a t i e n t s ' percept ions of s p e c i f i c in format iona l need, nor have i n v e s t i g a t i o n s examined the n u r s e ' s percept ions of what cancer pa t ien ts need to know, or v e r i f i e d the importance of t h i s informat ion with the pat ient" (p. 11). 35 A c c o r d i n g l y , they c a r r i e d out a study comparing nurse and pa t ien t percept ions of the l e a r n i n g needs of c a n c e r . p a t i e n t s . T h i r t y - t h r e e nurses and 27 cancer pa t ien ts completed quest ionnai res to rank s p e c i f i c informat ion items and problem areas i n r e l a t i o n to t h e i r importance to cancer p a t i e n t s , the degree of problem they represented to the cancer p a t i e n t , the p a t i e n t ' s present knowledge, and how much informat ion the pa t ient des i red about each a rea . Nurses assigned higher mean scores of importance on the general in format iona l items than d id p a t i e n t s . A v a i l a b i l i t y of f i n a n c i a l a s s i s t a n c e , c a r i n g fo r s e l f at home and work, and d i s c u s s i n g concerns with fami ly and f r i e n d s were rated of h ighest importance by nurses. Pa t ien ts gave h ighest ra t ings to knowing t h e i r diagnoses and plans of c a r e , c a r i n g fo r themselves at home and work, and what they would experience dur ing d iagnost ic procedures. In responding to the s i x - i t e m ranking s c a l e , nurses ranked dea l ing with f e e l i n g s as the most problematic area fo r pat ients while pa t ien ts ranked t h i s f i f t h . Pa t ien ts ranked minimizing the s ide e f f e c t s of therapy as the area of greatest d i f f i c u l t y . Th is was a l s o the area they wanted the most informat ion about. Nurses and pa t ien ts agreed that pa t ien ts had the most knowledge about minimizing the s ide e f f e c t s of therapy and the l e a s t knowledge about dea l ing with f e e l i n g s ; and s ince r e l a t i o n s h i p s with f r i e n d s and fami ly a l s o presented problems to cancer p a t i e n t s , more informat ion was des i red i n t h i s a rea . 36 Summary Cancer and the chemotherapy experience pose powerful challenges to the coping s k i l l s of i n d i v i d u a l s and f a m i l i e s . Oncology nurses recognize the importance of education i n a s s i s t i n g patients to deal with threats to t h e i r personhood and s u r v i v a l . The l i t e r a t u r e r e f l e c t s the p r i n c i p l e s of adult learning theory r e l a t e d to the assessment of patients' learning needs, h i g h l i g h t i n g the importance of the patient's perception. Learning needs i d e n t i f i e d by health care professionals are not always regarded as important by patients. S i m i l a r l y , health care professionals may f a i l to recognize patients' values and p r i o r i t i e s i n r e l a t i o n to t h e i r learning needs. Research demonstrates that patients' and professionals' perceptions of patient needs may d i f f e r s u b s t a n t i a l l y . Nurses and physicians play a key r o l e i n providing education for cancer patients r e c e i v i n g chemotherapy, yet no studies were found comparing these two groups' perceptions of patients' learning needs with those i d e n t i f i e d by patients themselves. Discrepancies i n the perceptions of these three groups could act as b a r r i e r s to e f f e c t i v e patient education. Studying both nurses' and physicians' perceptions should provide information necessary to remove b a r r i e r s and f o s t e r a c o l l a b o r a t i v e approach to patient teaching. Greater understanding of the l e v e l of congruence between patient and s t a f f perceptions i s necessary i n order to plan more e f f e c t i v e education. This study w i l l address patient and s t a f f perceptions of the learning needs of a p a r t i c u l a r patient group i n an e f f o r t to work toward t h i s understanding and improved patient care. 37 CHAPTER THREE Methodology This d e s c r i p t i v e survey was c a r r i e d out to compare the learning needs of cancer patients r e c e i v i n g chemotherapy as perceived by three groups involved i n patient education: nurses, physicians, and patients themselves. Demographic data were c o l l e c t e d from each group for d e s c r i p t i v e purposes. This chapter describes the instruments used i n the study, the study s e t t i n g , and the c h a r a c t e r i s t i c s of the subjects i n the sample used. Human r i g h t s and e t h i c a l considerations are addressed and data c o l l e c t i o n and analysis procedures described. Instruments Data c o l l e c t i o n instruments used i n t h i s study were an adaptation of the Assessment of Learning Needs Questionnaire (ALNQ) developed by Lauer et a l . (1982) and demographic data questionnaires prepared by the researcher. Assessment of Learning Needs Questionnaire. The Assessment of Learning Needs Questionnaire (Appendix A, B) has two forms, one for patients and the other for s t a f f . Except for differences i n pronouns used, the items on both questionnaires are i d e n t i c a l . The Questionnaire consists of r a t i n g and ranking scales. The r a t i n g scale consists of twenty general information items concerning cancer, eight chemotherapy, and eight radiotherapy treatment items. The 38 l a t t e r e ight items were omitted fo r t h i s study s ince none of the subjects was r e c e i v i n g radiotherapy. Respondents are asked to use a f i v e - p o i n t L i k e r t - t y p e s c a l e to rate how important knowledge of each item i s fo r the chemotherapy p a t i e n t , ranging from 1, i n d i c a t i n g "none or very l i t t l e " importance, to 5, "a great dea l" of importance. The ranking sca le concerns l ea rn ing needs of chemotherapy pat ients i n s i x areas: n u t r i t i o n , understanding the ac t ion of chemotherapy, minimizing chemotherapy s ide e f f e c t s , work or r e c r e a t i o n a l a c t i v i t i e s , r e l a t i o n s h i p s with s i g n i f i c a n t o thers , and dea l ing with f e e l i n g s . Respondents are asked to rank the s i x areas three t imes, according t o : 1) how problematic these areas are to cancer p a t i e n t s ; 2) p a t i e n t s ' present leve l ' of knowledge of the areas; and 3) how much pat ien ts want informat ion about each a rea . Items are ranked from 1, (most) to 6, ( l e a s t ) : 1 r e f e r s to the areas pa t ien ts f i n d most problemat ic , have the most knowledge about, or want the most informat ion about, and 6, the l e a s t . Content v a l i d i t y of the instrument was es tab l i shed by the unanimous agreement of three nurse experts i n oncology pat ient teaching a f t e r independent examination of the quest ionnai re items (Lauer et a l . , 1982). Lauer et a l . (1982) maintain that t h e i r instrument 's r e l i a b i l i t y i s promoted by p rov id ing c l e a r l y s ta ted wr i t ten i n s t r u c t i o n s and i tems. I f p a r t i c i p a n t s requi red c l a r i f i c a t i o n of wr i t ten i n s t r u c t i o n s or i tems, the i n v e s t i g a t o r s provided s i m p l i f i e d and standard verba l i n s t r u c t i o n s . Th is was done in the current study as w e l l . 39 Demographic ques t ionna i res . To obta in demographic in format ion , the researcher developed a quest ionnai re f o r each of the three groups (Appendix C , D, E ) . Nurses were asked to provide informat ion concerning t h e i r nurs ing education background, years i n n u r s i n g , length of time i n oncology nurs ing , and the work s e t t i n g ( i n - p a t i e n t or ambulatory c a r e ) . Phys ic ians were asked to report number of years i n medicine and length of time i n medical oncology. Information from pat ien ts inc luded age, sex, d i a g n o s i s , educat iona l background, mar i ta l s t a t u s , occupat ion , employment s t a t u s , chemotherapy p r o t o c o l , number of treatments completed, and length of time s ince beginning chemotherapy. Included i n these quest ionnai res were oppor tun i t i es fo r respondents to l i s t t o p i c s they considered important that were not addressed i n the ques t ionna i re , and to comment on the study, the quest ionna i re , or any concerns re la ted to pa t ient educat ion . Three nurs ing f a c u l t y with research exper t ise and two oncology c l i n i c a l nurse s p e c i a l i s t s reviewed the quest ionnai res and t h e i r recommendations were incorporated i n subsequent r e v i s i o n s . Se t t ing The s e t t i n g fo r t h i s study was the ambulatory care un i t of the A. Maxwell Evans C l i n i c (AMEC) of the Cancer Cont ro l Agency of B . C . (CCABC) i n Vancouver. Th is f a c i l i t y i s the major cancer treatment and r e f e r r a l centre f o r B r i t i s h Columbia and the Yukon T e r r i t o r y , and serves a c r o s s - s e c t i o n of socio-economic and e thnic groups from both urban and r u r a l popu la t ions . Three lymphoma c l i n i c s are held each week and 40 between 20 and 50 pa t ien ts attend each c l i n i c fo r treatment and f o l l o w -up. Subjects There were three groups of subjects i n t h i s study: 20 p a t i e n t s , 24 nurses and 10 p h y s i c i a n s . The pat ient group cons is ted of pa t ien ts diagnosed with lymphoma who were r e c e i v i n g chemotherapy fo r the f i r s t t ime. Th is group was chosen by the researcher because they rece ive treatment f requent ly (every one to three weeks) with a r igourous course of chemotherapy i n v o l v i n g complex combinations of as many as e ight drugs. Because i t was necessary to use samples of convenience, a r e l a t i v e l y homogeneous poula t ion with respect to d iagnosis and treatment was se lec ted to minimize the r i s k of b ias inherent i n t h i s form of sampling. The f o l l o w i n g c r i t e r i a were used to i d e n t i f y e l i g i b l e subjects fo r the pat ient group; 1) cu r ren t l y r e c e i v i n g chemotherapy treatment f o r Hodgkin's or non-Hodgkin's lymphoma; 2) have had at l e a s t one chemotherapy treatment; 3) have not rece ived treatment with more than one chemotherapy p r o t o c o l ; 4) able to speak, read and wr i te E n g l i s h ; 5) 18 years of age or o l d e r ; 6) able to p a r t i c i p a t e i n the interv iew and quest ionnai re completion process; 7) not r e c e i v i n g concurrent treatment with radiotherapy. The nurs ing s t a f f of the lymphoma c l i n i c s i d e n t i f i e d p o t e n t i a l subjects us ing the s e l e c t i o n c r i t e r i a es tab l i shed by the researcher . During the per iod from February to June, 1987, 23 pa t ien ts from two of the three lymphoma c l i n i c s were i d e n t i f i e d as e l i g i b l e to p a r t i c i p a t e . Twenty pa t ien ts consented to p a r t i c i p a t e . One ind ica ted i n t e r e s t , but 41 was drowsy due to pre-medicat ion with an t iemet ics , and two pat ien ts d e c l i n e d . The two care g iver groups were r e c r u i t e d from nurses who are invo lved i n teaching lymphoma pa t ien ts r e c e i v i n g chemotherapy and phys ic ians who are medical o n c o l o g i s t s , c l i n i c a l a s s o c i a t e s , or senior medical oncology res idents respons ib le fo r p r e s c r i b i n g and monitor ing chemotherapy treatment fo r lymphoma p a t i e n t s . These groups were a l s o samples of convenience. The researcher met with the ambulatory care nurses to exp la in the study and r e c r u i t p a r t i c i p a n t s . An informat ion l e t t e r about the study was posted on the h o s p i t a l un i ts c a r i n g for chemotherapy pa t ien ts with lymphoma. To accommodate nurses working s h i f t s , the researcher met with p a r t i c i p a n t s at a pre-arranged time of t h e i r convenience. Phys ic ians working with lymphoma pat ients r e c e i v i n g chemotherapy were approached by the researcher and asked to p a r t i c i p a t e . A l l e l i g i b l e nurses and phys ic ians approached agreed to p a r t i c i p a t e . Quest ionnaires were rece ived from 24 nurses and 10 p h y s i c i a n s . Two phys ic ians d id not re turn t h e i r ques t ionna i res . Human Rights and E t h i c a l Considerat ions P r i o r to data c o l l e c t i o n , the proposal fo r t h i s study was approved by the agency's c l i n i c a l i n v e s t i g a t i o n s committee and the U n i v e r s i t y of B r i t i s h Columbia's Behavioural Sciences Screening Committee fo r e t h i c a l review. An explanat ion of the purpose of the study and a l e t t e r of in format ion was provided to each p a r t i c i p a n t i n the care g iver groups (Appendix F ) . S ta f f members working i n the ambulatory care lymphoma 42 c l i n i c s were asked to i d e n t i f y pa t ien ts who met the s t u d y ' s e l i g i b i l i t y c r i t e r i a . These pa t ien ts rece ived a l e t t e r of informat ion exp la in ing the study (Appendix G); those agreeing to p a r t i c i p a t e were contacted by the researcher . Writ ten consent was obtained from a l l respondents i n the p a t i e n t , nurse and phys ic ian groups. Each p a r t i c i p a n t was given a copy of the consent form (Appendix H, I ) . Those who wished to rece ive a summary of the research f ind ings were asked to i n d i c a t e t h i s by w r i t i n g t h e i r address on the researcher ' s copy of the consent form. Data C o l l e c t i o n Procedure Respondents i n the nurse and phys ic ian groups reviewed both quest ionnai res with the researcher at the time consent was obta ined, and completed them at t h e i r convenience i n t h e i r homes or o f f i c e s . The researcher returned at a mutually convenient time to c o l l e c t the completed ques t ionna i res . With four except ions , respondents i n the pat ient group completed the quest ionnai re i n a p r i va te wai t ing area or examining room p r i o r to t h e i r chemotherapy admin is t ra t ion . Three people wished to complete t h e i r quest ionnai res at home. One pat ient asked the researcher to complete the quest ionnaire and interview process with him while he rece ived h i s chemotherapy to "take (his) mind o f f the treatment." The demographic data were c o l l e c t e d dur ing i n d i v i d u a l s t ruc tured in te rv iews . Fourteen of the 20 respondents were accompanied by a fami ly member. A f t e r the researcher explained the r a t i n g sca le of the Assessment of Learning Needs Quest ionna i re , pa t ien ts responded to each of the 43 items. Following the r a t i n g procedure, further i n s t r u c t i o n s were provided and p a r t i c i p a n t s completed the items i n the ranking scale. With the three exceptions noted previously, the researcher was present during completion of the questionnaire. A f t e r the questionnaire was completed, patients were asked to suggest any a d d i t i o n a l learning needs not included i n the questionnaire, and provide any comments they wished regarding the study, the questionnaire, or patient education. Their r e p l i e s were recorded i n wr i t i n g by the researcher. A l l questionnaires were coded and i d e n t i f y i n g information separated to maintain c o n f i d e n t i a l i t y . Data Analysis Since the questionnaires did not provide i n t e r v a l data, nonparametric s t a t i s t i c s were used i n the data analysis ( P o l i t and Hungler, 1983). Data were entered i n t o the University of B r i t i s h Columbia Mainframe computer and the S t a t i s t i c a l Package f o r the S o c i a l Sciences (SPSSX -Extended Version Release 2.0) was used to compute t e s t s t a t i s t i c s . The Kruskal-Wallis one-way analysis of variance and multiple comparisons te s t s were used to measure differences at a .05 l e v e l of s i g n i f i c a n c e (Hollander and Wolfe, 1973; S i e g e l , 1956). The Kruskal-Wallis t e s t i s considered to be the most e f f i c i e n t of the nonparametric t e s t s f o r k independent samples, and i s comparable to the F t e s t , the most powerful parametric t e s t (Siegel, 1956). These techniques were used to analyze data from the r a t i n g and ranking scales of the ALNQ. 44 Comments of the respondents concerning the ALNQ and pa t ien t education i n general were s tud ied q u a l i t a t i v e l y to add fur ther i n s i g h t i n t o responses provided to the s t ruc tured ques t ionna i res . 45 CHAPTER FOUR Presenta t ion and D iscuss ion of F indings The f i n d i n g s of t h i s study are reported i n four s e c t i o n s . The f i r s t sec t ion contains a d e s c r i p t i o n of each of the three groups p rov id ing data fo r the study. In the second s e c t i o n , responses of the three groups to the r a t i n g sca le items of the Assessment of Learning Needs Quest ionnaire (ALNQ) are reported and d i s c u s s e d . Sect ion 3 addresses the groups* responses to the ranking sca le items of the ALNQ. Sect ion 4 contains f ind ings obtained from respondents regarding the ALNQ and general comments on pat ient educat ion. Sect ion 1: The Sample Pa t ien ts Age and Sex. The pat ient group inc luded 12 men and e ight women. Ages of the respondents ranged from 20 to 65 years , with a mean age of 44.2 years and a median of 49 years . Half of the respondents were i n the 45 to 60 year age group. Pa t ien ts with Hodgkin's d isease were younger on the average than those with non-Hodgkin's lymphoma (mean ages 31.5 and 52.1 years r e s p e c t i v e l y ) . M a r i t a l S ta tus . The sample inc luded 12 respondents who were marr ied, s i x who were s i n g l e (never marr ied) , one who was d i v o r c e d , and one who was widowed. 46 Educational Level F i f t e e n respondents had completed high school, with ten of t h i s group having a d d i t i o n a l vocational or u n i v e r s i t y education. Five i n d i v i d u a l s had not achieved high school graduation. Occupation and Employment Status Patients i n t h i s sample represented a variety of occupations, such as student, c l e r k , rancher, machinist, accountant, or teacher. Seven respondents were working, either part-time or f u l l - t i m e , at the time of the study. Others were unemployed, on leave, or r e t i r e d . Diagnosis and Treatment A l l 20 of the respondents i n the patient sample were diagnosed with lymphoma and were r e c e i v i n g intravenous and o r a l chemotherapy. Nine patients were diagnosed with Hodgkin's disease. The remaining 11 patients had non-Hodgkin 1s lymphomas. Patients were being treated with combinations of as many as eight d i f f e r e n t chemotherapeutic agents. (Detailed information regarding the chemotherapy protocols i s presented i n Appendix J ) . Administration of these medications necessitated frequent c l i n i c v i s i t s and invasive procedures such as venipunctures for intravenous i n s e r t i o n or blood t e s t i n g . Patients r e c e i v i n g chemotherapy treatment may experience a myriad of side e f f e c t s which range from uncomfortable to p o t e n t i a l l y l i f e - t h r e a t e n i n g i n t h e i r impact. Side e f f e c t s frequently experienced by patients include nausea and vomiting, fatigue, h a i r l o s s , skin changes, p h l e b i t i s , weight gain and changes i n deposition of body f a t , stomatitis, and numbness and t i n g l i n g i n hands or feet. Increased 47 s u s c e p t i b i l i t y to i n f e c t i o n s , anemia, and bleeding abnormalities may occur due to myelosuppression. Patients also face the prospect of temporary or permanent s t e r i l i t y as a r e s u l t of the chemotherapy (Nevidjon, 1984). The rigours of the treatment experience constitute a formidable challenge to the coping s k i l l s of even the hardiest of i n d i v i d u a l s . Respondents had received from two to f i f t e e n chemotherapy treatments when interviewed, with a mean of 6.3 and a median and mode of 4.5 and 4 treatments, r e s p e c t i v e l y . The mean length of time since the onset of chemotherapy ranged from one to 28 weeks, with a mean of 9.5 weeks, a median of 7.0 weeks, and a mode of 4.0 weeks. The heterogeneous nature of the study's patient group r e f l e c t s the f a c t that cancer occurs i n a l l age and socioeconomic groups. Cancers of the lymphatic system are more l i k e l y to a f f e c t males than females, and have a c h a r a c t e r i s t i c age d i s t r i b u t i o n . Hodgkin's disease occurs more frequently i n younger adults, with a peak age of 15-34 years. Non-Hodgkin* s lymphomas a f f e c t an older population, with a peak incidence i n the 50-70 year age group (Dolan, 1984; Morra and Potts, 1980). In general, the age and sex d i s t r i b u t i o n of the patient sample r e f l e c t s that of the population of Hodgkin's and non-Hodgkin's lymphoma patients. 48 Nurses Twenty s t a f f nurses, three c l i n i c a l i n s t r u c t o r s , and one nurs ing un i t manager p a r t i c i p a t e d i n the study. A l l of the 24 respondents had experience i n teaching lymphoma pat ien ts r e c e i v i n g chemotherapy. Two of the c l i n i c a l i n s t r u c t o r s were a l s o respons ib le fo r content r e l a t e d to pa t ient education i n the chemotherapy nurs ing course o f fe red by the agency. Respondents had an average of 11.98 years i n nurs ing (ranging from 2 to 31 years , with a median and mode of ten y e a r s ) . The nurses had from two to 12 years of experience i n oncology n u r s i n g , with a mean of 6.19 years , a median of s i x years , and a mode of seven years . At the time of t h i s study, e ight nurses worked i n ambulatory care , 14 i n the h o s p i t a l u n i t , and two i n both s e t t i n g s . S ix of the nurses working i n the h o s p i t a l un i t had a l s o worked i n ambulatory care . The nurses i n t h i s study possessed a strong background i n nurs ing and a depth of experience i n c a r i n g f o r cancer p a t i e n t s . Having worked i n ambulatory care and i n - p a t i e n t s e t t i n g s , these nurses would be knowledgeable about the care of lymphoma p a t i e n t s . Phys ic ians Ten phys ic ians p a r t i c i p a t e d i n t h i s study, i n c l u d i n g seven medical o n c o l o g i s t s , one c l i n i c a l a s s o c i a t e , and two senior medical oncology r e s i d e n t s . A l l respondents in t h i s group were responsib le fo r the medical treatment and fo l low-up of lymphoma pat ients r e c e i v i n g chemotherapy. The number of years i n medicine ranged from seven to 31, with a mean of 15.1 y e a r s , and a median and mode of 11 years . Respondents had from one to 24 years of experience i n medical oncology, with a mean and mode of 9.8 years and 7.5 years r e s p e c t i v e l y . 49 These phys ic ians possessed a high l e v e l of exper t ise i n medical oncology and the care of lymphoma p a t i e n t s . Sect ion 2: Assessment of Learning Needs Quest ionnai re : Rat ing Scale The r a t i n g sca le of the ALNQ addresses the f i r s t of t h i s s tudy 's research quest ions: What are the d i f f e rences i n percept ion of chemotherapy pat ients * l ea rn ing needs among pat ients r e c e i v i n g chemotherapy, nurses p rov id ing teaching i n chemotherapy, and onco log is ts? Using a L i k e r t - t y p e s c a l e , respondents rated each of the 20 general items and e ight treatment items accord ing to i t s importance fo r chemotherapy p a t i e n t s ; 1, i n d i c a t i n g "none or very l i t t l e " importance, to 5, "a great dea l" of importance. Mean ra t ings f o r each item were c a l c u l a t e d fo r each group. Items rated 4 and 5 were considered important l ea rn ing needs. Mean ra t ings fo r the 28 items fo r the three groups are provided in Appendix K. Pat ients assigned a mean importance r a t i n g of 4 ("a l o t " of importance) or greater to 12 of the 28 i tems. S ix of these were general informat ion items and s i x were chemotherapy treatment i tems. As Table I shows, the 12 items which pa t ien ts considered most important centre around d i a g n o s i s , treatment, t e s t i n g , and symptoms of r e c u r r i n g i l l n e s s . The i r concerns focus in on the here-and-now of t h e i r disease and p a r t i c u l a r l y i t s treatment. Th is c l u s t e r i n g of items re la ted to the treatment po in ts to the c e n t r a l i t y of the chemotherapy experience i n the p a t i e n t ' s wor ld. These f ind ings are cons is ten t with adul t l ea rn ing t h e o r y ' s premise that adu l ts are problem-centered i n t h e i r approach to 50 Table I Group Comparison of Rat ing Scale Items Where P a t i e n t s ' Mean Ratings = 4 or Above Rat ing Scale Item Pat ients Nurses Phys ic ians S i g n i f i c a n c e (n=20) (n=24) (n=10) m SD m SD m SD 2. The plan of 4.40 .88 4.25 .79 4.40 .52 ns treatment decided upon by your (his) phys ic ian 3. The symptoms 4.40 1.05 3.29 1.27 3.70 .95 .0052 of r e c u r r i n g i l l n e s s 4. Your (His) 4.35 1.04 4.29 .75 4.90 .32 ns d iagnosis 6. Med ica t ions / Chemotherapy A. Purpose of 4.60 .68 3.96 .81 4.60 .52 .0108 medications C. A c t i o n s , what 4.20 .89 3.04 1.16 2.90 .74 .0005 they do, how they work D. Schedule fo r 4.20 .95 4.33 .92 4.40 .52 ns r e c e i v i n g medications E . Length of time 4.35 1.04 4.42 .50 4.20 .42 ns you (he) must rece ive medications F. Side e f f e c t s 4.65 .75 4.54 .72 4.40 .52 ns a n t i c i p a t e d , problems with your (his) medications (Kruska l -Wal l is one-way ANOVA; ns = not s i g n i f i c a n t , p > .05) 51 Table I (continued) Rat ing Scale Item Pat ien ts Nurses Phys ic ians S i g n i f i c a n c e (n=20) (n=24) n=10 (ns = not m SD m SD m SD s i g n i f i c a n t , where =.05). G. How to minimize 4.55 .69 4.67 .64 4.70 .48 ns any s ide e f f e c t s which occur due to your (his) medications 14.The reasons fo r 4.15 1.09 3.96 1.00 4.10 .74 ns any d iagnos t ic t e s t you (he w i l l ) rece ive 15.The procedure 4.05 1.15 3.92 1.02 3.60 .70 ns fo r any d iagnost ic t e s t you (he w i l l ) rece ive 16.What you (he) 4.10 1.12 4.13 .90 3.90 .74 ns w i l l experience as the d iagnost ic t e s t i s being done (Kruska l -Wal l is one-way ANOVA; ns = not s i g n i f i c a n t , £ > .05) 52 l e a r n i n g , and that t h e i r readiness to learn i s increased when the need i s re la ted to r o l e performance t a s k s . Pat ients i d e n t i f i e d important l e a r n i n g needs r e l a t e d to the experience of treatment and the r o l e of a cancer pa t ient r e c e i v i n g chemotherapy. The f ind ings are s i m i l a r to those of Derd iar ian (1986), who concluded that p a t i e n t s ' emphasis on the importance of informat ion concerning disease and treatment i s "congruent with the t h e o r e t i c a l assumptions that the relevance of informat ion needed may be re la ted to the amount, imminence, and l i k e l i h o o d of a n t i c i p a t e d h a r m . . . as we l l as to the s u r v i v a l needs of p a t i e n t s . . . " (p. 280). Table I demonstrates a number of s i m i l a r i t i e s i n the percept ions of p a t i e n t s , nurses, and phys ic ians as to what knowledge i s important f o r pa t ien ts r e c e i v i n g chemotherapy. A l l three groups considered the f o l l o w i n g items as being of "a l o t " to "a great deal" of importance to p a t i e n t s : - d i a g n o s i s ; - the plan of treatment; -schedule fo r r e c e i v i n g medicat ions; - l eng th of time on treatment; - s i d e e f f e c t s a n t i c i p a t e d ; -how to minimize treatment s ide e f f e c t s . These areas are s i m i l a r to the l ea rn ing needs i d e n t i f i e d by other researchers (Derd iar ian , 1986; Dodge, 1969; Johnson and Blumberg, 1984; Pender, 1974). That p a t i e n t s , nurses, and phys ic ians i n t h i s study assigned high importance ra t ings to l ea rn ing about treatment s ide e f f e c t s and techniques to minimize them i s cons is ten t with Dodd's (1983) 53 conc lus ion that care g ivers need to teach pat ients and t h e i r f a m i l i e s about these areas . The nurses and phys ic ians rated some items more h igh ly than d id the p a t i e n t s . Table II shows the r a t i n g sca le items which only the care g iver groups rated 4 or above. To t e s t for s t a t i s t i c a l l y s i g n i f i c a n t d i f f e rences among the group responses, the K r u s k a l - W a l l i s one-way a n a l y s i s of var iance was performed. S i g n i f i c a n t f i n d i n g s (p < .05) are reported in Tables I and II . A n a l y s i s of var iance only provides informat ion about whether d i f f e rences between groups are greater than wi th in group d i f f e rences (Leach, 1979). Where there was a s i g n i f i c a n t between group d i f f e r e n c e the data were subjected to the K r u s k a l - W a l l i s mul t ip le comparisons t e s t (Hollander and Wolfe, 1973). The r e s u l t s are reported i n Table I I I . There are s t a t i s t i c a l l y s i g n i f i c a n t d i f fe rences among the three groups' importance ra t ings fo r s i x r a t i n g sca le i tems, although none were detected between the nurse and phys ic ian groups. Respondents i n the pa t ien t sample rated knowledge of the symptoms of r e c u r r i n g i l l n e s s and the purpose of the chemotherapy medications as more important than d id both nurses and p h y s i c i a n s , and the d i f f e rences between the pat ient group and the nurse group were s i g n i f i c a n t ( £ < .008). Pender 's (1974) f i n d i n g s were s i m i l a r : pa t ien ts wanted informat ion about p o s s i b l e compl icat ions of the present i l l n e s s and prevent ion of future i l l n e s s e s . Dodge (1969) a l s o noted that long-term pat ien ts wished more d e t a i l e d informat ion about the purposes and e f f e c t s of t h e i r medicat ions. D i f fe rences e x i s t e d i n the groups' percept ions of the importance to pat ients of understanding the ac t ion of chemotherapy 54 Table II Rat ing Scale Items Where Mean Ratings = 4 or Above fo r S ta f f Only Rat ing Scale Item Pat ients Nurses Phys ic ians S i g n i f i c a n c e (n=20) (n=24) (n=10) m SD m SD m SD 1. How to care for 3.75 1.21 4.29 .81 4.50 .53 ns yourse l f (himself) at home and at work 6. Med ica t ions / Chemotherapy H. Whether your 3.35 1.18 4.12 .80 4.10 .57 ns (his) medications w i l l be given as p i l l s , i n j e c t i o n s , or in t ravenously 7. N u t r i t i o n A. How to choose 3.10 1.25 4.08 .72 3.80 .63 .0175 foods to help you (him) maintain your (his) weight B. How to 3.70 1.30 4.50 .59 4.20 .63 ns minmize problems with loss of appe t i t e , nausea or vomit ing D. How to 3.55 1.47 4.46 .78 4.10 .88 ns decrease problems with b leeding gums, sore th roa t , or any other problem you (he) may experience with your (his) l i p s , mouth, or throat (Kruska l -Wal l is one-way ANOVA; ns = not s i g n i f i c a n t , £ > .05) 55 Table II (continued) Rat ing Scale Item Pat ients Nurses Phys ic ians S i g n i f i c a n c e (n=20) (n=24) (n=10) m SD m SD m SD 10.Whether you are 3.55 1.50 4.33 .82 4.00 .67 ns (he i s ) able to work at a job f u l l t ime, par t - t ime , or not at a l l 12.The a v a i l a b i l i t y 2.75 1.16 3.96 1.08 4.30 .82 .0007 of f i n a n c i a l ass is tance for home care , medicat ions, or treatments, and so on. 17.How to t a l k to 2.90 1.37 4.25 1.03 3.80 .92 .0035 your (his) fami ly and/or f r i ends about your (his) i l l n e s s , p l a n s , or any other concerns you (he) may have (Kruska l -Wal l is one-way ANOVA; ns = not s i g n i f i c a n t , p > .05) Table III Kruskal - W a l l i s M u l t i p l e Comparisons Test : Rat ing Scale Resul ts (Group 1 = P a t i e n t s ; Group 2 = Nurses; Group 3 = Phys ic ians) Item Groups Test Resul t C r i t i c a l Value 3. 1,2 14.60 * 11.38 2,3 3.63 14.15 1,3 10.97 14.56 6.A 1,2 12.13 * 11.38 2,3 11.28 14.15 1,3 0.85 14.56 6 . C . 1,2 15.64 * 11 .38 2,3 2.71 14.15 1,3 18.35 * 14.56 7.A. 1,2 12.70 * 11.38 2,3 5.10 14.15 1,3 10.33 14.56 12. 1,2 14.70 * 11.38 2,3 4.30 14.15 1 ,3 19.00 * 14.56 17. 1,2 15.31 * 11.38 2,3 6.53 14.15 1,3 8.78 14.56 * £ < .008 57 (p_ = .0005). As shown i n Table I I I , the mul t ip le comparisons t e s t revealed that pa t ien ts rated the importance of t h i s item s i g n i f i c a n t l y higher than d id nurses and phys ic ians ( £ < .008). Cancer pa t ien ts i n a study done by C a s s i l e t h et a l . (1980) considered informat ion about what the treatment does i n s i d e the body as abso lu te ly necessary to know. In contrast to the f ind ings of Mcintosh (1976), who reported that 75% of cancer pa t ien ts s tudied wished or required no informat ion about t h e i r d i a g n o s i s , pa t ients i n t h i s study considered t h i s informat ion to be important . C a s s i l e t h et a l . (1980), i n a U.S. s tudy, found that pat ients rated informat ion about d iagnosis as e s s e n t i a l to know. C u l t u r a l in f luences may be a f a c t o r i n exp la in ing these d i f f e r e n c e s , s ince Mcintosh 's study took place i n B r i t a i n . The groups d i f f e r e d on the importance to pat ients of knowing the a v a i l a b i l i t y of f i n a n c i a l ass is tance (p = .0007). Both nurses and phys ic ians rated t h i s as more important than d id pa t ien ts (p < .008). Johnson and Blumberg (1984), i n a U .S . study, found that pa t ien ts i d e n t i f i e d l ea rn ing needs r e l a t e d to the f i n a n c i a l impact of the disease and treatment on the fami ly . In the l i g h t of the economic s t ressors imposed by the hea l th care system i n the United S t a t e s , t h i s was not an unexpected f i n d i n g . With the extensive medical coverage a v a i l a b l e i n B r i t i s h Columbia, the f i n a n c i a l burden of i l l n e s s i s decreased. Th is r a i s e s the quest ion: Why do nurses and phys ic ians perceive the a v a i l a b i l i t y of f i n a n i c a l ass is tance f o r home care , medicat ions, and treatments to be a more important l ea rn ing need than do pa t ien ts? Perhaps care g ivers are more aware of the p o t e n t i a l burden of "hidden" costs than pat ients might be at t h i s t ime. 58 Nurses and physicians rated knowledge of how to choose foods to help maintain weight as being of greater importance than did patients. A number of patients, when completing the n u t r i t i o n items of the r a t i n g scale, commented that despite nausea from t h e i r intravenous chemotherapy, t h e i r increased appetite due to prednisone ensured that weight loss was not a problem. A difference also existed (£ = .0035) i n ratings of the importance of knowing how to t a l k to family and friends about i l l n e s s , treatment, or other concerns. The multiple comparisons t e s t demonstrated a s i g n i f i c a n t difference (£ < .008) between the patients' and nurses' ratings of t h i s item. Derdiarian's (1986) study of the learning needs of newly-diagnosed cancer patients indicated that patients give p r i o r i t y to information about the disease, such as treatment, prognosis, diagnosis, and t e s t i n g , before information about personal needs. Fernsler (1986) found that nurses perceived more s e l f -care d e f i c i t s than did patients i n areas concerning a f f e c t i v e states and s o c i a l i n t e r a c t i o n . This study's findings are consistent with those of Derdiarian (1986) and Fernsler (1986), suggesting that patients' p r i o r i t i e s during the diagnosis and treatment phase are re l a t e d to s u r v i v a l needs. Lauer, Murphy, and Powers (1982), developers of the ALNQ, chose d i f f e r e n t methods to analyze t h e i r findings. They considered the general information items and the treatment items separately, and used the t - t e s t to measure the differences between the o v e r a l l means. Items were then rank-ordered according to mean importance ratings. Nurses i n t h e i r study assigned higher importance ratings to both general information and chemotherapy treatment items than did patients. The 59 d i f f e r e n c e was s i g n i f i c a n t only fo r the general informat ion i tems. The rank order ing of items showed that l ea rn ing need p r i o r i t i e s d i f f e r e d between pat ien ts and nurses. In t h i s study, pa t ients assigned a lower mean importance r a t i n g to general informat ion items (m=3.70) than d id nurses and phys ic ians (m= 3.93 and 3.89 r e s p e c t i v e l y ) . P a t i e n t s ' mean r a t i n g of treatment items (m=4.16) was s l i g h t l y higher than nurses ' and p h y s i c i a n s ' mean ra t ings (m=4.04 and 4 .13) . Th is r e f l e c t s the importance placed on disease and treatment information by the pat ients i n t h i s study. Since p a t i e n t s , nurses, and phys ic ians d i f f e r i n knowledge and s k i l l s , o r i e n t a t i o n , and exper ience, d i f f e rences i n t h e i r assessment of important l ea rn ing needs might be expected. Pa t ien ts b r i n g to the treatment experience a s t rong foundation of independence and s e l f - c a r e s k i l l s which may not be assessed by care g i v e r s . Nurses and p h y s i c i a n s , because of t h e i r f a m i l i a r i t y with cancer and chemotherapy, may a n t i c i p a t e problems unforeseen by p a t i e n t s . Adul t l ea rn ing theory def ines a l ea rn ing need as a gap between an i n d i v i d u a l ' s present l e v e l of competency and a higher l e v e l required fo r e f f e c t i v e performance as def ined by o n e s e l f , an o r g a n i z a t i o n , or s o c i e t y (Knowles, 1980). P a t i e n t s , nurses, and phys ic ians p a r t i c i p a t e i n t h i s needs assessment p rocess . Adul t l ea rn ing theory, while acknowledging there are things adul ts "ought" to l e a r n , emphasizes s t a r t i n g with the " f e l t " or perce ived needs of the l ea rner . That the three groups i n t h i s study i d e n t i f i e d a number of s i m i l a r l ea rn ing needs as important i s encouraging. 60 Section 3: Assessment of Learning Needs Questionnaire: Ranking Scales The ranking scales of the ALNQ address the remaining three research questions of t h i s study: What are the differences i n p r i o r i t y of problem areas for patients re c e i v i n g chemotherapy, nurses providing teaching i n chemotherapy, and oncologists? What are the differences in knowledge of problem areas as perceived by patients r e c e i v i n g chemotherapy, nurses providing teaching i n chemotherapy, and oncologists? What are the differences i n perception of areas i n which chemotherapy patients want more information, as perceived by patients r e c e i v i n g chemotherapy, nurses providing teaching i n chemotherapy, and oncologists? The ranking scale's s i x content areas are: n u t r i t i o n , understanding the action of chemotherapy, minimizing chemotherapy side e f f e c t s , work or r e c r e a t i o n a l a c t i v i t i e s , r e l a t i o n s h i p s with family and f r i e n d s , and dealing with f e e l i n g s . Respondents ranked these areas three times, according to 1) how problematic these areas are to cancer patients; 2) patients' present l e v e l of knowledge of the areas; and 3) how much patients want information about each area. Responses to the f i r s t and second rankings specify the nature of the gap between the present and the desired l e v e l s of knowledge i n s i x areas. Responses to the t h i r d ranking r e f l e c t the p r i o r i t i e s patients, nurses, and physicians assign to the " f e l t " needs i n the same s i x areas. Although respondents were asked to use each rank only once, some stated that they could not choose between items they f e l t were of equal rank. 61 Areas Pat ien ts F ind Most Problematic Mean rankings of each of the s i x content areas were c a l c u l a t e d fo r each group, and the areas were rank ordered from the most problematic to the l e a s t problematic to p a t i e n t s . These data are presented i n Tables IV and V. As seen in the frequency data reported i n Table IV, p a t i e n t s n u r s e s * , and p h y s i c i a n s ' responses showed some v a r i a t i o n wi th in t h e i r respect ive groups. Th is may r e f l e c t the use of a f o r c e d -choice ranking without t i e d scores . However, respondents were cons is ten t i n t h e i r i d e n t i f i c a t i o n of areas problematic to p a t i e n t s , with the exception of the area of understanding the ac t ion of chemotherapy. The rankings f o r each group showed marked s i m i l a r i t y . The nurses ' and p h y s i c i a n s ' rank order ings were i d e n t i c a l . Comparison of the nurses ' and p h y s i c i a n s ' rankings with pat ient responses pointed to s i m i l a r percept ions i n the areas of minimizing the s ide e f f e c t s of chemotherapy, dea l ing with f e e l i n g s , r e l a t i o n s h i p s with fami ly and f r i e n d s , and r e c r e a t i o n a l and work a c t i v i t i e s . However, pa t ients perce ived n u t r i t i o n as l e s s problematic (ranking i t s ix th ) than d id nurses and p h y s i c i a n s , who ranked i t f o u r t h . A l l of the pat ients i n t h i s study were tak ing prednisone as par t of t h e i r chemotherapy treatment. Many pa t ien ts reported tha t , once the nausea from other drugs had passed, the prednisone ensured that they had no problems with a p p e t i t e . Pa t ien ts d id comment that they would be i n t e r e s t e d i n n u t r i t i o n a l informat ion r e l a t e d to cancer prevent ion and to "working with the chemotherapy." Pat ients i d e n t i f i e d understanding the ac t ion of chemotherapy as more problematic (ranking i t th i rd ) than d id nurses and p h y s i c i a n s , who ranked i t as l e a s t problemat ic . 62 Table IV Responses to the Ranking Scale Items of the ALNQ Which of these areas do you f i n d (think pat ients f ind) the most  problematic? Ranking Scale Group Item Pat ients Nurses Phys ic ians (n=20) (n=24) (n=10) Rank 1 2 3 4 5 6 1 2 3 4 5 6 1 2 3 4 5 6 N u t r i t i o n 1 2 1 7 2 7 1 4 4 6 7 2 0 2 2 1 4 1 Minimiz ing the s ide e f f e c t s of chemotherapy 8 5 3 2 2 0 1 2 5 3 3 1 0 5 2 0 2 1 0 Recreat iona l and/or work a c t i v i t i e s 2 2 3 1 7 5 0 1 5 6 9 3 0 0 1 4 3 2 Re la t ionsh ips with fami ly members and/or f r i e n d s 2 2 4 3 6 3 1 5 9 4 5 0 2 2 3 1 2 0 Understanding the ac t ion of chemotherapy 1 7 3 3 3 3 0 0 3 3 2 16 0 2 0 1 0 7 Deal ing with (your own) f e e l i n g s 6 3 5 3 2 1 1 1 8 2 1 1 1 3 2 4 1 0 0 * Rank 1 respresent ing the most problematic 63 Table V Ranking S c a l e : Most Problematic Areas For Pat ients Ranking Scale Item M SD P a t i e n t s : (n=20) 1. Minimiz ing the s ide e f f e c t s of chemotherapy 2.250 1.372 2. Deal ing with f e e l i n g s 2.750 1.552 3. Understanding the ac t ion of chemotherapy 3.450 1.605 4. Re la t ionsh ips with fami ly and/or f r i ends 3.900 1.586 5. Recreat iona l and/or work a c t i v i t i e s 4.200 1.704 6. N u t r i t i o n 4.400 1.536 Nurses: (n=24) 1. Minimiz ing the s ide e f f e c t s of chemotherapy 2.000 1.251 2. Deal ing with f e e l i n g s 2.000 1.351 3. Re la t ionsh ips with fami ly and/or f r i ends 3.292 1.116 4. N u t r i t i o n 3.833 1.383 5. Recreat iona l and/or work a c t i v i t i e s 4.333 1.090 6. Understanding the ac t ion of chemotherapy 5.292 1.122 P h y s i c i a n s : (n=10) 1. Minimiz ing the s ide e f f e c t s of chemotherapy 2.200 1.549 2. Deal ing with f e e l i n g s 2.300 1.059 3. Re la t ionsh ips with family and/or f r i ends 2.900 1.449 4. N u t r i t i o n 4.000 1.414 5. Recreat iona l and/or work a c t i v i t i e s 4.600 0.966 6. Understanding the ac t ion of chemotherapy 5.000 1.700 64 The Kruskal-Wallis one-way ANOVA was used to detect differences i n the three groups' responses to the ranking scale items. A s t a t i s t i c a l l y s i g n i f i c a n t difference (p= .0005) was found i n the ranking assigned to how problematic understanding the action of chemotherapy i s for patients. The multiple comparisons t e s t revealed that patients d i f f e r from both nurses and physicians (£ < .008), ranking t h i s item as more problematic than the other two groups perceive i t to be. Comparison of t h i s study's findings with those of Lauer et a l . (1982) reveals s i m i l a r i t i e s . Patients i n both studies rated minimizing the side e f f e c t s of chemotherapy as most problematic for patients, and n u t r i t i o n as l e a s t problematic. Both patient groups assigned a higher ranking to understanding the action of chemotherapy than did the nurse groups. Areas i n Which Patients Have the Most Knowledge Respondents were asked to rank order the same s i x content areas a second time, to describe areas i n which patients have the most knowledge. The Kruskal-Wallis one-way ANOVA t e s t detected no s i g n i f i c a n t differences i n the responses of the three groups. However, examining the response frequencies (Table VI) and each group's mean rankings for the s i x content areas (Table VII), a number of observations are worth noting. The patients' mean rankings for f i v e of the s i x areas range from 3.05 to 3.95, and the frequency data show a wider range of ranking responses, which suggests a lack of consensus among patients as to areas i n which they have most information. This could r e f l e c t the wide v a r i a t i o n i n the knowledge and l i f e experience adults bring to learning s i t u a t i o n s . Patients consistently ranked t h e i r knowledge of Table VI Responses to the Rat ing Scale Items of the ALNQ Which of these same areas do you have (think pat ients have) the most  knowledge about? Ranking Scale Pa t ien ts Nurses Phys ic ians Item (n=20) (n=24) (n=10) Rank 1 2 3 4 5 6 1 2 3 4 5 6 1 2 3 4 5 6 N u t r i t i o n 4 4 2 6 1 3 5 3 7 5 4 0 2 3 2 2 1 0 Minimiz ing the s ide e f f e c t s of chemotherapy 3 2 2 2 8 3 7 5 3 3 5 1 3_ 1 0 0 2 2 Recreat iona l and/or work a c t i v i t i e s 3 5 5 3 1 3 4 9 4 4 2 1 4 2 2 2 0 0 Re la t ionsh ips with fami ly members and/or f r i e n d s 4 4 3 5 4 0 5 3 3 6 6 1 0 3 2 2 3 0 Understanding the ac t ion of chemotherapy 1 3 3 2 3 8 2 1 4 3 3 1 1 0 0 1 1 2 6 Deal ing with (your own) f e e l i n g s 5 2 5 3 3 2 2 3 4 3 4 8 1 1 3 3 1 1 * Rank 1 represent ing the area of most knowledge Table VII Ranking S c a l e : Areas i n which Pa t ien ts Have Most Knowledge Ranking s c a l e item M SD P a t i e n t s : (n=20) 1. Re la t ionsh ips with fami ly and/or f r i ends 3.050 1.468 2. Recreat iona l and/or work a c t i v i t i e s 3.150 1.631 3. Deal ing with f e e l i n g s 3.150 1.694 4. N u t r i t i o n 3.250 1.713 5. Minimiz ing the s ide e f f e c t s of chemotherapy 3.950 1.731 6. Understanding the ac t ion of chemotherapy 4.350 1.725 Nurses: (n=24) 1. Recreat iona l and/or work a c t i v i t i e s 2.750 1.391 2. Minimiz ing the s ide e f f e c t s of chemotherapy 2.875 1.676 3. N u t r i t i o n 3.000 1.383 4. Re la t ionsh ips with fami ly and/or f r i e n d s 3.333 1.606 5. Deal ing with f e e l i n g s 4.167 1.736 6. Understanding the ac t ion of chemotherapy 4.542 1.693 P h y s i c i a n s : (n=10) 1. Recreat iona l and/or work a c t i v i t i e s 2.200 1.229 2. N u t r i t i o n 2.700 1.337 3. Re la t ionsh ips with fami ly and/or f r i ends 3.500 1.269 4. Deal ing with f e e l i n g s 3.500 1.434 5. Minimiz ing the s ide e f f e c t s of chemotherapy 3.800 2.251 6. Understanding the ac t ion of chemotherapy 5.300 1.059 67 the ac t ion of chemotherapy low, a f i n d i n g cons is tent with the nurse and phys ic ian groups' percept ions of p a t i e n t s ' knowledge. Th is i s not unexpected, s ince t h i s would be a l ea rn ing need p r e c i p i t a t e d s p e c i f i c a l l y by the event of beginning chemotherapy. Of note i s that a l l three groups recognized a d e f i c i t i n p a t i e n t s ' understanding of the ac t ion of chemotherapy, yet only the pat ient group perce ived t h i s d e f i c i t to be problemat ic . The top three areas i n which pa t ien ts perceived they were most knowledgeable were: r e l a t i o n s h i p s with fami ly and f r i e n d s , r e c r e a t i o n a l and/or work a c t i v i t i e s , and dea l ing with f e e l i n g s . These areas r e l a t e to the i n d i v i d u a l s ' experiences of d a i l y l i f e where they have an array of coping s t r a t e g i e s that are not s p e c i f i c to the treatment exper ience. Nurses ranked p a t i e n t s ' knowledge of minimizing the s ide e f f e c t s of chemotherapy higher than d id pa t ien ts themselves. An explanat ion may be that the nurses spend considerable time prov id ing pa t ien ts with informat ion about s ide e f f e c t s . However, pa t ients perceive minimizing the s ide e f f e c t s of chemotherapy as most problemat ic , and may f e e l they lack the informat ion required to manage them more e f f e c t i v e l y . Resul ts of t h i s ranking sca le item d i f f e r e d from those obtained by Lauer et a l . (1982). In t h e i r study, pa t ients reported having the most knowledge about minimizing s ide e f f e c t s and the l e a s t about dea l ing with f e e l i n g s . Areas i n Which Pat ien ts Want the Most Information Respondents ranked the s i x content areas a t h i r d t ime, accord ing to t h e i r percept ions of the areas in which pat ients want the most in format ion . Th is informat ion i s summarized i n Tables VII I and IX. Resul ts of the K r u s k a l - W a l l i s one-way ANOVA revealed s i g n i f i c a n t 68 Table VII I Responses to the Ranking Scales Items of the ALNQ Which of these same areas do you want (think pat ients want) the most informat ion about? Ranking Scale Group Item Pat ients Nurses Phys ic ians (n=20) (n=24) (n=10) Rank 1 2 3 4 5 6 1 2 3 4 5 6 1 2 3 4 5 6 N u t r i t i o n 1 2 5 2 4 6 1 5 7 4 4 5 1 4 3 2 0 0 Minimiz ing the s ide e f f e c t s of chemotherapy Recreat ion and/or work a c t i v i t i e s Re la t ionsh ips with fami ly members and/or f r i ends Understanding the ac t ion of chemotherapy Deal ing with (your own) f e e l i n g s * Rank 1 represent ing the area of most wanted informat ion 8 7 1 2 1 1 16 4 3 1 0 0 6 1 2 0 1 0 0 1 3 3 8 5 0 3 3 3 11 6 2 1 2 2 2 1 0 2 2 7 4 5 1 4 3 10 3 3 1 1 1 2 3 2 9 5 4 0 0 2 4 4 1 4 1 10 0 2 0 1 2 5 Table IX Ranking Sca le : Areas in which Pat ients Want the Most Information Ranking sca le item M SD P a t i e n t s : (n=20) 1. Understanding the ac t ion of chemotherapy 2.150 1.531 2. Minimiz ing the s ide e f f e c t s of chemotherapy 2.200 1.473 3. Deal ing with f e e l i n g s 3.350 1.461 4. N u t r i t i o n 4.200 1.609 5. Re la t ionsh ips with fami ly and/or f r i ends 4.400 1.273 6. Recreat iona l and/or work a c t i v i t i e s 4.650 1.182 Nurses: (n=24) 1. Minimiz ing the s ide e f f e c t s of chemotherapy 1.542 0.884 2. Deal ing with f e e l i n g s 2.917 1.530 3. N u t r i t i o n 3.583 1.442 4. Re la t ionsh ips with fami ly and/or f r i ends 3.792 1.351 5. Understanding the ac t ion of chemotherapy 4.000 2.022 6. Recreat iona l and/or work a c t i v i t i e s 4.417 1.283 P h y s i c i a n s : (n=10) 1. Minimiz ing the s ide e f f e c t s of chemotherapy 1.900 1.370 2. N u t r i t i o n 2.600 0.966 3. Recreat iona l and or work a c t i v i t i e s 3.400 1.713 4. Re la t ionsh ips with fami ly and/or f r i ends 4.100 1.663 5. Deal ing with f e e l i n g s 4.200 1.317 6. Understanding the ac t ion of chemotherapy 4.800 1.619 70 d i f f e rences between the three groups' rankings of n u t r i t i o n (p = .0265), and understanding the ac t ion of chemotherapy (p = .0012). The mul t ip le comparisons t e s t s revealed the fo l low ing d i f f e rences (p < .008): Phys ic ians assigned a higher p r i o r i t y to n u t r i t i o n a l informat ion than d i d p a t i e n t s , and pa t ien ts assigned a higher p r i o r i t y to r e c e i v i n g information about understanding the ac t ion of chemotherapy than d id e i t h e r nurses or phys ic ians ( £ < .008). The s i x content areas were rank ordered fo r each group, based on the mean rankings assigned to each area . Pa t ien ts ranked understanding the ac t ion of chemotherapy, minimizing the s ide e f f e c t s of chemotherapy, and dea l ing with f e e l i n g s as the areas i n which they wanted the most in format ion . Nurses assigned top rankings to minimizing s ide e f f e c t s , dea l ing with f e e l i n g s , and n u t r i t i o n as areas i n which pa t ien ts want the most in format ion , while phys ic ians se lec ted minimizing the s ide e f f e c t s of chemotherapy, n u t r i t i o n , and r e c r e a t i o n a l and work a c t i v i t i e s . Pa t ien ts ranked understanding the ac t ion of chemotherapy as number one; nurses and phys ic ians ranked i t f i f t h and s i x t h r e s p e c t i v e l y . As prev ious ly noted, a l l three groups recognized that pat ients lack knowledge about the ac t ion of chemotherapy. However, only the pat ient group perce ived t h i s d e f i c i t to be problematic and one i n which they des i red more in format ion . D iscuss ion of Ranking Scale F indings S t a t i s t i c a l l y s i g n i f i c a n t ranking sca le r e s u l t s are summarized i n Tables X and XI . The three groups demonstrate agreement on the areas pa t ien ts f i n d most problemat ic . P a t i e n t s , nurses, and phys ic ians i n t h i s study ranked minimizing the s ide e f f e c t s of chemotherapy and Table X Summary of S t a t i s t i c a l l y S i g n i f i c a n t Ranking Scale Resul ts Using the K r u s k a l - W a l l i s one-way ANOVA Ranking s c a l e item H-score p 1. Areas pa t ien ts f i n d most problemat ic : Understanding the ac t ion of chemotherapy 15.280 .0005 3. Areas i n which pa t ien ts want the most in format ion: N u t r i t i o n 7.260 .0265 Understanding the ac t ion of chemotherapy 13.512 .0012 72 Table XI K r u s k a l - W a l l i s M u l t i p l e Comparisons Tes t : Ranking Scale Resul ts (Group 1 = P a t i e n t s ; Group 2 = Nurses; Group 3 = Phys ic ians) Item Groups Test C r i t i c a l r e s u l t value 1. Areas pa t ien ts f i n d most problemat ic: Understanding the ac t ion of 1,2 16.72 * 11.38 chemotherapy 2,3 1.77 14.15 1,3 14.95 * 14.56 N u t r i t i o n 1,2 6.02 11.38 2,3 10.03 14.15 1,3 16.05 * 14.56 3. Areas in which pa t ien ts want the most in format ion: Understanding the ac t ion of 1,2 13.56 * 11.38 chemotherapy 2,3 5.74 14.15 1,3 20.00 * 14.56 * p < .008 73 dea l ing with f e e l i n g s as most problemat ic , a f i n d i n g s i m i l a r to those of other researchers (Derd iar ian , 1986; Dodge, 1969; Lauer et a l . , 1982). However, nurses and phys ic ians underestimated how problematic understanding the ac t ion of chemotherapy was for pat ients and how much pat ien ts des i red informat ion about t h i s a rea . Other i n v e s t i g a t o r s have reported s i m i l a r f i n d i n g s . Respondents i n a study by C a s s i l e t h et a l . (1980) considered informat ion regarding what the treatment does i n s i d e the body as abso lu te ly necessary and Dodge (1969) found that long-term pa t ien ts expressed a need fo r more d e t a i l e d informat ion on the purposes and e f f e c t s of medicat ions. In t h i s study, the three most problematic areas fo r pa t ien ts were a l s o the areas i n which pa t ien ts wanted the most in format ion , s u b s t a n t i a t i n g adul t l ea rn ing theory 's premise that adul ts are or iented to problem-centered l ea rn ing focused on immediacy of a p p l i c a t i o n . Pa t ien t respondents i n t h i s study placed a high p r i o r i t y on learn ing about the ac t ion of chemotherapy, a f i n d i n g not r e f l e c t e d i n the nurse or phys ic ian groups. Th is f i n d i n g was corroborated by r a t i n g sca le r e s u l t s of the item concerning the chemotherapy's a c t i o n : the three groups d i f f e r e d i n the importance r a t i n g assigned to t h i s item (p = .0005). The l i t e r a t u r e descr ibes a r o l e fo r pat ient educators in a s s i s t i n g pa t ien ts to assume and maintain a sense of con t ro l (Johnson and F l a h e r t y , 1980). An increased understanding of the purpose and ac t ion of chemotherapy could enhance a p a t i e n t ' s sense of c o n t r o l in dea l ing with the treatment experience and s ide e f f e c t s . The ac t ions of chemotherapeutic agents are var ied and complex. P r o f e s s i o n a l s might 74 assume that the average patient has neither the a b i l i t y nor the desire to understand how chemotherapy works, since t h i s requires knowledge of c e l l biology and k i n e t i c s . Wise (1979) observes that some care providers may be threatened by the t r a n s f e r of power from health care professionals to learners that i s involved i n the adult education process. Perhaps professionals protect patients from " d i f f i c u l t " information and so maintain t h e i r "professional" i d e n t i t y and mystique. Providing complex information i n a form that i s comprehensible and h e l p f u l to patients i s d i f f i c u l t but necessary. Patients ranked the area concerned with dealing with f e e l i n g s highly i n a l l three ranking scale s i t u a t i o n s . This suggests that t h i s area i s problematic and that, although patients report having knowledge about dealing with t h e i r f e e l i n g s , they wish more information i n t h i s area. This f i n d i n g i s not unexpected, i n the l i g h t of the magnitude and nature of the treatment experience. Nurses ranked dealing with f e e l i n g s higher than did patients; physicians ranked i t lower. Other nursing studies have reported findings which emphasize psychosocial concerns (Fernsler, 1986; Lauer et a l . , 1982; Todres and Wojtiuk, 1979), suggesting that nurses are more oriented than physicians to psychosocial issues. Nurses and physicians require s k i l l and knowledge i n a s s i s t i n g patients to meet t h e i r need to learn more about dealing with f e e l i n g s and can begin by recognizing the p r i o r i t y patients place on r e c e i v i n g t h i s information. Patients', nurses', and physicians' perceptions of problem areas, patients' knowledge, and patients' desire for information are s i m i l a r i n the areas of minimizing the side e f f e c t s of chemotherapy, r e c r e a t i o n a l 75 and work a c t i v i t i e s , dea l ing with f e e l i n g s , and r e l a t i o n s h i p s with fami ly and f r i e n d s . However, s t a t i s t i c a l l y s i g n i f i c a n t d i f f e rences e x i s t among the three groups i n t h e i r rankings of informat ion about n u t r i t i o n and understanding the ac t ion of chemotherapy, as shown i n Tables X and XI . Th is i s cons is ten t with r a t i n g sca le r e s u l t s which i n d i c a t e d that pa t ien ts i d e n t i f i e d important l ea rn ing needs centered around the treatment. Nurses and p h y s i c i a n s , however, p laced more emphasis on l ea rn ing needs re la ted to a c t i v i t i e s of d a i l y l i v i n g . P a t i e n t s ' p r i o r i t i e s focus on the c r i s i s of treatment and r e l a t e d s u r v i v a l needs. According to adul t l ea rn ing theory , p a t i e n t s ' readiness to learn would be enhanced by addressing t h e i r l ea rn ing needs r e l a t e d to the treatment exper ience. Learning needs i n areas such as n u t r i t i o n may be of l e s s importance to pa t ien ts because pa t ien ts have knowledge and s k i l l s from l i f e experience which a s s i s t them. Health care p r o f e s s i o n a l s should recognize and assess p a t i e n t s ' e x i s t i n g knowledge and coping s k i l l s . Previous research i n percept ions of c a r i n g , assessments of p a t i e n t s ' a f f e c t i v e s t a t e s , and cancer p a t i e n t s ' l ea rn ing needs has demonstrated the importance of v a l i d a t i n g s t a f f and pat ient percept ions (Jennings and Muhlenkamp, 1981; Larson , 1986; Lauer et a l . , 1982; Mayer, 1987; Nehemkis et a l . , 1984; P e r r e a u l t , 1985). Assessment of the l ea rn ing needs of adul ts should begin with the " f e l t " or perce ived needs of the l ea rner . In t h i s study, s i g n i f i c a n t d i f f e rences were found i n p a t i e n t s ' , n u r s e s ' , and p h y s i c i a n s ' percept ions of the l e a r n i n g needs of chemotherapy p a t i e n t s . Since adul t l ea rn ing theory i d e n t i f i e s the learner as the only r e l i a b l e and v a l i d source of t h i s in format ion , 76 nurses and phys ic ians can enhance the e f fec t i veness of pa t ient education by seeking the p a t i e n t ' s percept ion to v a l i d a t e t h e i r assessment of pa t ient l ea rn ing needs. Sect ion 4: Comments of the Respondents During a s t ruc tured in terv iew, fo l low ing completion of the ALNQ, pat ients were asked to comment on the instrument and pat ient education i n genera l . Writ ten responses i n these areas were obtained from the nurse and phys ic ian groups in t h e i r answers to quest ions inc luded on the demographic quest ionna i re . A summary of respondents' comments i s presented to add fu r ther i n s i g h t in to responses provided to the s t ruc tured ques t ionna i res . Comments about the ALNQ A l l three groups were asked to l i s t a d d i t i o n a l areas they f e l t were important to people r e c e i v i n g chemotherapy which were not covered by the ALNQ. In genera l , pa t ien ts f e l t the ALNQ was comprehensive, addressing areas of importance to people r e c e i v i n g chemotherapy. Two pat ien ts suggested that some i tems, such as those concerned with s ide e f f e c t s , were too genera l . One pa t ien t s ta ted : "I want to know when the s ide e f f e c t s are going to happen, and how I might f e e l when they d o . " Most pa t ien ts commented that the ranking sca le items were p a r t i c u l a r l y c h a l l e n g i n g , s ince they had to ass ign p r i o r i t i e s to the i tems. One respondent found i t d i f f i c u l t to rank items such as dea l ing with f e e l i n g s and r e l a t i o n s h i p s with fami ly and f r i ends separa te ly , s ince she viewed them as " t i e d together . " Nurses a l s o reported being chal lenged by the need to set p r i o r i t i e s 77 i n responding to the ranking sca le i tems. One nurse commented that " i t was a good experience to th ink t h i s through." Respondents in the nurse group recommended the fo l low ing a d d i t i o n a l areas: 1. increased s p e c i f i c i t y regarding treatment s ide e f f e c t s ( e . g . , immunosuppression and assoc ia ted r i s k of i n f e c t i o n , changes i n body image and sexual and reproduct ive f u n c t i o n , long term e f f e c t s and r i s k s of t reatment) ; 2. a v a i l a b i l i t y of s p e c i f i c se rv ices and resource people ( e . g . , access to medical and nurs ing s e r v i c e s at home, sources of educat ional informat ion about the d i a g n o s i s , and s p i r i t u a l suppor t ) ; 3. fami ly concerns ( e . g . , fami ly teach ing , r o l e changes i n fami ly r e l a t i o n s h i p s , and sexual communication and rapport with spouse); 4. prognosis (potent ia l fo r cure or remiss ion) ; 5. treatment a l t e r n a t i v e s or adjuncts ( e . g . , unconventional treatment methods, use of r e l a x a t i o n , hypnotherapy, touch therapy, megavitamins). Phys ic ians added the fo l low ing areas to those addressed by the ALNQ: 1. prognosis and goal of treatment; 2. d i f f e r e n t i a t i n g between disease symptoms and treatment s ide e f f e c t s ; 3. more s p e c i f i c informat ion regarding sources of f i n a n c i a l h e l p , s e r v i c e s , s u p p l i e s . The respondents' comments suggest that the ALNQ was u s e f u l i n t a r g e t i n g perceived l ea rn ing needs of chemotherapy p a t i e n t s , but that i t s general nature does impose l i m i t a t i o n s on obta in ing a more s p e c i f i c assessment. A l e s s s t ruc tured approach would be more su i ted to 78 ob ta in ing percept ions of i n d i v i d u a l needs fo r informat ion and the r a t i o n a l e fo r seeking such in format ion . Comments About Pat ient Education When asked to p a r t i c i p a t e i n the study, most respondents i n a l l three groups commented on the importance of pa t ient education or the p r o v i s i o n of informat ion meaningful to people r e c e i v i n g chemotherapy. Pa t ien ts shared a v a r i e t y of comments with the researcher re la ted to pa t ient educat ion. Many pat ients expressed apprec ia t ion for informat ion provided by the s t a f f i n t h i s s e t t i n g . Two respondents' comments i l l u s t r a t e the v a r i a t i o n i n t h e i r responses to in format ion: "I have found that informat ion i s shared f r e e l y here—and t h a t ' s the way I l i k e i t ! " "I was t o l d a l o t of th ings about the whole business—but at the time i t went i n one ear and out the other and I haven' t r e a l l y pursued i t . " A number of pa t ient respondents emphasized the importance of rega in ing and mainta in ing c o n t r o l over t h e i r l i v e s . One respondent s a i d i t t h i s way: "This d isease takes away c o n t r o l of your l i f e . I t ' s important to know what's happening and to know what you can do to help y o u r s e l f . You c a n ' t jus t l e t i t a l l happen to you—or at l e a s t I can ' t—I mean, i t ' s my body and I want to get w e l l . So I have to be a c t i v e . " A number of pa t ien ts sought d e t a i l e d informat ion about t h e i r d iagnosis and treatment to maintain c o n t r o l . One pa t ien t s ta ted,"You grab everything not to be dumb." Another pat ient recommended "a smorgasbord of informat ion" where pa t ien ts "could p ick and choose what 79 they want." A l l of the pat ients expressed apprec ia t ion fo r the wr i t ten mater ia l provided by the s t a f f which addresses the s ide e f f e c t s of t h e i r chemotherapy p r o t o c o l , and o f f e r s s p e c i f i c suggestions to a l l e v i a t e them. One pa t ien t asser ted : "If you can l i c k the s ide e f f e c t s , everyth ing e lse f a l l s in to p l a c e . Knowing what to expect deals with that fear of the unknown." Pat ients des i red more informat ion about s ide e f f e c t s , and wished more s p e c i f i c ass is tance i n dea l ing with the impact of s ide e f f e c t s on t h e i r d a i l y l i v e s . One respondent r e p l i e d "I th ink my concerns as a 21 -year -o ld student who hasn ' t had a fami ly would be d i f f e r e n t from those of someone who's 65 years o ld and r e t i r e d . " Pa t ien ts emphasized the importance of having wr i t ten mater ia l to r e f e r t o , s ince they found informat ion was e a s i l y forgot ten due to s t r e s s and " informat ion o v e r l o a d . " One pa t ien t re la ted t h a t , although she was f r ightened by the need to begin chemotherapy, she wanted d e t a i l e d informat ion about what she might experience fo l lowing the chemotherapy: "I c o u l d n ' t take i t a l l i n , but I wanted that l i s t (the wr i t ten handout on s ide e f f e c t s ) — t h e one about vomit ing , ha i r l o s s , depress ion-- i t sounds l i k e a Steven Sp ie lberg c r e a t u r e . " Another .aspect of c o n t r o l was h igh l igh ted by another p a t i e n t , who c i t e d a ro le for pat ient education i n understanding what treatment a l t e r n a t i v e s are a v a i l a b l e and how to make informed c h o i c e s . Fourteen of the twenty respondents in the pat ient group were accompanied by a fami ly member, most f requent ly a spouse. An i n c i d e n t a l f i n d i n g was obtained i n observing the family member's response to the 80 ALNQ- Family members suggested that the researcher repeat the study, i n v o l v i n g fami ly members of chemotherapy p a t i e n t s , s i n c e , as one commented, "We need to learn too , but some of what we need i s d i f f e r e n t from what pa t ien ts need." Spouses f requent ly asked the researcher about the a v a i l a b i l i t y of n u t r i t i o n a l in format ion , and were re fe r red to one of the agency's n u t r i t i o n a l consu l tan ts . One pat ient a l s o i d e n t i f i e d a need fo r the general p u b l i c to have access to accurate informat ion about cancer . The pa t ien ts i n t h i s study genera l ly viewed pat ient education as a demonstration of care and concern on the par t of the s t a f f . Respondents f requent ly mentioned the he lp fu lness of the s t a f f i n o f f e r i n g informat ion to a s s i s t them i n the treatment experience and to inc lude them i n dec is ion-making. One respondent under l ined the importance of pa t ien t educat ion as an on-going a c t i v i t y . She expressed apprec ia t ion fo r the f a c t that the nurses reviewed her medications with her each week, monitored her s ide e f f e c t s and a s s i s t e d her with s e l f - c a r e s t r a t e g i e s fo r minimizing them. Another pat ient saw pat ient teaching as an opportuni ty to "get involved with your p a t i e n t s , with a personal touch. I t ' s hard when you f e e l l i k e a number." Pa t ien ts i d e n t i f i e d a need to focus on "get t ing through t h i s treatment as best we c a n . " They i d e n t i f i e d s p e c i f i c l ea rn ing needs in the areas of s ide e f f e c t s and t h e i r management and understanding t h e i r d isease and how i t i s t reated to a s s i s t them to maintain c o n t r o l i n the face of a d i f f i c u l t and of ten f r i g h t e n i n g s i t u a t i o n . Nurses expressed concerns r e l a t e d to the type, amount, and t iming of informat ion given to p a t i e n t s : 81 "I wonder i f we're g i v i n g people the informat ion they want and need. Sometimes I th ink we over load people with too much in fo rmat ion . " "It would be of i n t e r e s t to know when pa t ien ts would l i k e informat ion g iven , how much they remember of t h e i r i n i t i a l c l i n i c appointment and the informat ion they get at that t i m e . . . informat ion i s not re levant i f i t i s given at inappropr ia te t imes . " Nurses reported that pa t ien ts wanted to d iscuss the v a l i d i t y of unconventional treatment methods and q u a l i t y of l i f e i s s u e s , and i d e n t i f i e d a need to give " b a s i c , easy- to -understand, o v e r a l l explanat ions" i n answer to p a t i e n t s ' quest ions . P h y s i c i a n s ' comments about pa t ient education centered on the r o l e of shar ing informat ion r e l a t e d to the prognosis . One respondent emphasized the importance of communicating "an honest assessment of the hea l th care team's expecta t ions . At the very l e a s t , a c l e a r statment of ' c u r a t i v e ' versus ' p a l l i a t i v e ' in ten t should be made i n a manner s e n s i t i v e to the p a r t i c u l a r p e r s o n a l i t y of the p a t i e n t . At the most, important informat ion i s conveyed to those that wish i t ; at the l e a s t , no harm i s done i n that those who do not wish to hear e s s e n t i a l l y do not hear . " Th is stance contrasts sharply with Mcintosh 's (1976) conc lus ion that " rou t ine ly informing a l l pa t ients would not only cause considerable d i s t r e s s to many but , given that most pat ients are able to obta in the informat ion they want independently of having i t formal ly communicated to them, i t would a l s o be l a r g e l y unnecessary" (p. 303). Newly-diagnosed pa t ien ts were i d e n t i f i e d as the group needing the most pat ient educat ion , s ince "most worr ies and quest ions occur at that t ime ." One phys ic ian summarized h i s percept ions of p a t i e n t s ' l ea rn ing needs as 82 f o l l o w s : "The major i ty of pa t ien ts tend to focus on very concre te , r e a l concerns that they can e a s i l y r e l a t e to and do something about. -Thus , n u t r i t i o n , w o r k / a c t i v i t y , f inances are e a s i e r fo r them to approach than f e e l i n g s about t h e i r cond i t ion or i t s treatment, and i t s u l t imate e f f e c t on t h e i r l i v e s and that of t h e i r f a m i l y . " Th is comment i s congruent with the p h y s i c i a n s ' percept ions , but not with p a t i e n t s ' perce ived lea rn ing needs. However, these concerns, by t h e i r very concrete nature , are of ten e a s i e r fo r p r o f e s s i o n a l s to address. Adul t l ea rn ing theory would support the not ion that adul ts are indeed or ien ted to concre te , a c t i o n - f o c u s e d concerns. Pa t ien ts i n t h i s study reported l ea rn ing needs re la ted to the management of t h e i r d isease and treatment in t h e i r d a i l y l i v e s . N u t r i t i o n , w o r k / a c t i v i t y , and f inances are eas ie r for them to approach, but perhaps not because these areas are e s p e c i a l l y r e a l or concre te , but because they perce ive that they have more knowledge about them. Pa t ien ts ranked dea l ing with f e e l i n g s as problemat ic , and des i red more informat ion about t h i s a rea . Th is suggests that p a t i e n t s ' concerns may not deal e x c l u s i v e l y with "concrete" a reas , but with l i f e and r e l a t i o n a l issues as w e l l . Summary In t h i s chapter , the s tudy 's f ind ings have been presented and d i s c u s s e d . They i n d i c a t e s i m i l a r i t i e s and d i f f e rences i n p a t i e n t s ' , n u r s e s ' , and p h y s i c i a n s ' percept ions of the l ea rn ing needs of lymphoma pat ien ts r e c e i v i n g chemotherapy. Perceived l ea rn ing needs reported by pa t ien ts centered on items 83 re la ted to disease and treatment, with t h e i r p r i o r i t i e s focused on the c r i s i s of treatment and re la ted s u r v i v a l needs. Nurses and phys ic ians p laced more emphasis on l e a r n i n g needs r e l a t e d to a c t i v i t i e s of d a i l y l i v i n g . P a t i e n t s ' responses suggested that the areas in which they perce ived themselves most knowledgeable were those r e l a t i n g to the i n d i v i d u a l ' s experience of d a i l y l i f e , ra ther than to the s p e c i f i c s of the treatment exper ience. Of encouragement i s the f i n d i n g that the nurses and phys ic ians were aware of many of the problems and l ea rn ing needs expressed by the pa t ien ts r e c e i v i n g chemotherapy. P a t i e n t s , nurses, and phys ic ians o f fe red comments re la ted to the comprehensiveness of the ALNQ, and to pa t ien t education i n genera l . Nurse and phys ic ian repondents gave s p e c i f i c areas they perceived to be important to pa t ien ts i n a d d i t i o n to those covered i n the ALNQ. Learning needs r e l a t e d to disease prognosis and s p e c i f i c s ide e f f e c t s of treatment were examples c i t e d by the care g iver groups. The comments of respondents i n a l l three groups concerning pa t ien t education i n general revealed a d d i t i o n a l quest ions and percept ions which provided fur ther i n s i g h t i n t o responses provided to the s t ruc tured ques t ionna i res . Pa t ien ts were var ied i n t h e i r responses to informat ion and i n the l e v e l of d e t a i l i n which they wished t h e i r l ea rn ing needs to be met. They emphasized the importance of rega in ing and mainta in ing c o n t r o l over t h e i r l i v e s , and used informat ion o f fe red by s t a f f to a s s i s t them i n the treatment experience and dec is ion-making. Pa t ien ts expressed apprec ia t ion fo r wr i t ten mater ia ls and s p e c i f i c suggestions regarding the management of s ide e f f e c t s , and viewed pa t ien t education as an on-going a c t i v i t y . The lea rn ing needs of chemotherapy pa t ien ts i n t h i s study r e l a t e d to the management of t h e i r disease and treatment t h e i r d a i l y l i v e s . 85 CHAPTER FIVE Summary, Conclusions, Implications, and Recommendations Patient education i s acknowledged to be an important component of cancer care. Popular and professional l i t e r a t u r e a t t r i b u t e s a key role to patient education i n a s s i s t i n g i n d i v i d u a l s and f a m i l i e s to cope more e f f e c t i v e l y with the diagnosis and treatment of cancer. However, research demonstrates that patients' and professionals' perceptions of patients' educational needs may d i f f e r s u b s t a n t i a l l y . Accurate assessment of educational needs i s c e n t r a l to the planning of e f f e c t i v e programs. Adult learning theory states that the more agreement that e x i s t s i n the educator's and the learner's assessment of learning needs, the higher the p r o b a b i l i t y that e f f e c t i v e learning w i l l occur. To accurately i d e n t i f y learning needs and plan e f f e c t i v e patient education, an understanding of the perceptions of patients, nurses, and physicians i s e s s e n t i a l . More knowledge i s a l s o needed to i d e n t i f y the perceived learning needs of cancer patients' family members. The Cancer Control Agency of B r i t i s h Columbia, the province's major cancer treatment and r e f e r r a l centre, was the s e t t i n g f o r t h i s d e s c r i p t i v e survey. Using the Assessment of Learning Needs Questionnaire (ALNQ) developed by Lauer et a l . (1982) and a demographic data questionnaire developed by the researcher, the perceptions of patients' learning needs held by a convenience sample of nurses, physicians, and patients r e c e i v i n g chemotherapy were studied. Twenty patients diagnosed with lymphoma, and 24 nurses and ten physicians who 86 provide care to lymphoma p a t i e n t s , p a r t i c i p a t e d i n the study. Demographic data were c o l l e c t e d from the three groups to descr ibe the sample. Twelve men and e ight women, who ranged i n age from 20 to 65 years , composed the pat ient group. Respondents were heterogeneous with respect to mar i ta l s t a t u s , educat ional background, occupat ion and employment s t a t u s . A l l pa t ients were r e c e i v i n g combination chemotherapy fo r Hodgkin's disease or non-Hodgkin's lymphoma. Respondents had rece ived from two to 15 chemotherapy treatments over a per iod ranging from one to 28 weeks. Twenty-four nurses took part i n t h i s study, a l l of whom had experience i n teaching lymphoma pat ien ts r e c e i v i n g chemotherapy. Years of p r a c t i c e i n nurs ing ranged from two to 31, with two to 12 years of experience i n oncology. Both ambulatory care and i n p a t i e n t s e t t i n g s were represented. Ten phys ic ians respons ib le fo r the medical treatment and fo l low-up of lymphoma pat ients r e c e i v i n g chemotherapy responded to the ques t ionna i res . Respondents in t h i s group reported having seven to 31 years of p r a c t i c e i n medicine, with one to 24 years of experience i n oncology. Responses to the Assessment of Learning Needs Quest ionnaire (ALNQ) were s tudied using nonparametric techniques of s t a t i s t i c a l a n a l y s i s , to determine the existence and l o c a t i o n of d i f f e rences i n percept ions among the three groups. The ALNQ has a form fo r pa t ien ts and s t a f f . Except for d i f f e rences in pronouns used, the items on both quest ionnai res are i d e n t i c a l . Using a f i v e - p o i n t sca le (1, i n d i c a t i n g none or very l i t t l e , to 5, a great 87 deal) p a t i e n t s , nurses , and phys ic ians rated the importance of 28 items fo r pa t ien ts r e c e i v i n g chemotherapy. A n a l y s i s of the r a t i n g sca le responses revealed s i g n i f i c a n t d i f f e rences among the three groups i n t h e i r percept ions of knowledge important to chemotherapy pa t ien ts on s i x of the 28 i tems. Pa t ien ts rated knowledge of the symptoms of r e c u r r i n g i l l n e s s and the purpose of chemotherapy as more important than nurses perceived they would, and considered understanding the ac t ion of chemotherapy to be more important than e i t h e r nurses or phys ic ians a n t i c i p a t e d . Nurses and phys ic ians rated the importance of knowing how to choose foods to maintain weight, and the a v a i l a b i l i t y of f i n a n c i a l ass is tance as more important to pa t ien ts than d id the p a t i e n t s . Nurses rated the importance of knowing how to t a l k about concerns with fami ly and f r i ends more h igh ly than d id p a t i e n t s . These f ind ings i n d i c a t e that pat ients perceive t h e i r l ea rn ing needs to be centered on knowledge r e l a t e d to t h e i r d isease and treatment. Nurses and p h y s i c i a n s , on the other hand, emphasize concerns re la ted to a c t i v i t i e s of d a i l y l i v i n g as being the important l ea rn ing needs fo r p a t i e n t s . The ranking sca le of the ALNQ addresses s i x content areas: n u t r i t i o n , understanding the ac t ion of chemotherapy, minimizing chemotherapy s ide e f f e c t s , work or r e c r e a t i o n a l a c t i v i t i e s , r e l a t i o n s h i p s with fami ly and f r i e n d s , and dea l ing with f e e l i n g s . Respondents ranked the s i x areas three t imes, according to 1) how problematic these areas are to p a t i e n t s ; 2) p a t i e n t s ' present l e v e l of knowledge of the areas; and 3) how much pat ien ts want informat ion about each area . 88 Responses of the three groups to the f i r s t ranking sca le item ind ica ted considerable agreement, with one s i g n i f i c a n t except ion: pa t i en ts ranked understanding the ac t ion of chemotherapy as more problematic for pat ients than e i t h e r nurses or phys ic ians perceive i t to be. Given the complexity of chemotherapy's a c t i o n , care g ivers might agree that understanding t h i s area would indeed be problematic fo r many p a t i e n t s . S t a t i s t i c a l a n a l y s i s revealed no s i g n i f i c a n t d i f f e rences i n the rankings assigned by the three groups to the areas i n which pa t ien ts have the most knowledge. Rankings assigned by pat ients to the areas showed l i t t l e consensus wi th in the group, which may r e f l e c t the i n d i v i d u a l nature of the s k i l l s and knowledge base that pat ients b r i n g to a l e a r n i n g s i t u a t i o n . The top three areas i n which pa t ien ts perceive themselves to be most knowledgeable concern r e l a t i o n s h i p s , work and r e c r e a t i o n , and dea l ing with f e e l i n g s . These are s k i l l s which have a p p l i c a t i o n beyond the treatment experience to a l l areas of l i f e . Pa t ien ts may f e e l they have a reper to i re of e f f e c t i v e coping s t r a t e g i e s a v a i l a b l e to them. S i g n i f i c a n t d i f f e rences were noted among the three groups' rankings of areas i n which pa t ien ts want the most in format ion . Pa t ien ts ranked understanding of chemotherapy as the area i n which they wanted the most in format ion: nurses and phys ic ians ranked t h i s area f i f t h and s i x t h r e s p e c t i v e l y . An explanat ion fo r t h i s might be that understanding the ac t ion of chemotherapy increases a p a t i e n t ' s sense of c o n t r o l i n dea l ing with the impact of the treatment exper ience. P a t i e n t s , nurses, and phys ic ians agreed that t h i s was the area i n which pa t ien ts have the 89 l e a s t knowledge, but many care g ivers dismissed i t as too d i f f i c u l t and perhaps unnecessary knowledge fo r the pa t ient r e c e i v i n g chemotherapy treatment. Phys ic ians assigned a higher p r i o r i t y to r e c e i v i n g informat ion about n u t r i t i o n than d id p a t i e n t s . A l l three groups agreed that r e c e i v i n g informat ion about minimizing the s ide e f f e c t s of chemotherapy was a p r i o r i t y for p a t i e n t s . Nurses and pa t ien ts agreed that pa t ien ts want informat ion about dea l ing with f e e l i n g s . No s i g n i f i c a n t d i f f e rences between the nurse and phys ic ian groups were i d e n t i f i e d i n t h e i r responses to the r a t i n g and ranking sca les of the ALNQ. Th is suggests tha t , despi te d i f f e rences in knowledge base and o r i e n t a t i o n , the two p r o f e s s i o n a l groups are c l o s e l y a l igned i n t h e i r percept ions of p a t i e n t s ' l ea rn ing needs. General comments about pa t ien t education and the ALNQ were gathered from the pat ient group i n an interview s e t t i n g and from the two careg iver groups through responses to two open-ended quest ionnai re i tems. Pat ients found the ALNQ to be comprehensive, although some f e l t that items such as those dea l ing with s ide e f f e c t s could be more s p e c i f i c . Nurses recommended i n c r e a s i n g s p e c i f i c i t y in f i v e areas: s ide e f f e c t s , s p e c i f i c s e r v i c e s and resource people , fami ly concerns, prognos is , and treatment a l t e r n a t i v e s and ad juncts . Phys ic ians suggested that items concerning prognos is , d i f f e r e n t i a t i n g between disease symptoms and s ide e f f e c t s , and more d e t a i l regarding f i n a n c i a l h e l p , s e r v i c e s , and suppl ies be added to the assessment of p a t i e n t s ' l ea rn ing needs. The enthusiasm and i n t e r e s t i n t h i s study shown by the respondents i n a l l three groups demonstrates the value placed on pat ient education 90 as an important source of support fo r cancer pa t ien ts r e c e i v i n g chemotherapy. Pa t ien ts reported wanting in format ion , but the extent and l e v e l of d e t a i l des i red v a r i e d . Th is would be expected, given the unique base of knowledge and experience that adul ts b r i n g to l ea rn ing s i t u a t i o n s . Many pa t ien ts expressed apprec ia t ion fo r the wr i t ten information provided by the s t a f f concerning p o t e n t i a l chemotherapy s ide e f f e c t s and minimizing t h e i r impact. They emphasized the importance of having informat ion i n wr i t ten form, to r e f e r to on an on-going b a s i s . Educat iona l a c t i v i t i e s were a l s o perceived as an opportuni ty f o r s t a f f to demonstrate c a r i n g for pa t ien ts on an i n d i v i d u a l b a s i s . Pa t ien ts i d e n t i f i e d a need fo r informat ion to a s s i s t them to regain and maintain c o n t r o l dur ing the d iagnosis and treatment exper ience. Many of the respondents and fami ly members who accompanied them i d e n t i f i e d the need to study the l ea rn ing needs of fami ly members and the general p u b l i c i n r e l a t i o n to cancer and chemotherapy treatment. Nurses reported quest ions re la ted to the type, extent , and t iming of informat ion provided fo r p a t i e n t s . Phys ic ians were concerned about the ro le of pa t ient education i n r e l a t i o n to d i s c u s s i n g prognosis and i t s i m p l i c a t i o n s with p a t i e n t s . Conclusions Based on the f ind ings of t h i s study, the fo l low ing conclus ions can be drawn: The l ea rn ing needs of pat ients undergoing chemotherapy tend to focus on concerns re la ted to the treatment exper ience, and the knowledge and s k i l l s required to cope with the impact of the disease and treatment on t h e i r l i v e s . Pa t ien ts descr ibed themselves as most knowledgeable i n 91 areas r e l a t i n g to d a i l y l i f e experiences rather than disease or treatment r e l a t e d a reas , and were or iented to s u r v i v a l i n t h e i r l ea rn ing needs. The three groups demonstrated considerable s i m i l a r i t y i n t h e i r percept ions of areas problematic to pat ients and areas i n which pa t ien ts have the most knowledge. These f ind ings i n d i c a t e an impressive l e v e l of knowledge and s k i l l on the par t of the care g ivers i n assess ing the problems and concerns of chemotherapy p a t i e n t s . However, despi te presumed knowledge and exper t ise i n dea l ing with the concerns of chemotherapy p a t i e n t s , nurses ' and p h y s i c i a n s ' percept ions of p a t i e n t s ' l ea rn ing needs d i f f e r e d from those held by p a t i e n t s . The care g ivers perceive pat ients to be more concerned with l ea rn ing needs re la ted to a c t i v i t i e s of d a i l y l i v i n g than pat ients repor ted . E f f e c t i v e pat ient education requi res the accurate i d e n t i f i c a t i o n of l ea rn ing needs. With i t s emphasis on addressing the perceived needs and concerns of adul ts as the s t a r t i n g p o i n t , adul t l ea rn ing theory provides a u s e f u l framework f o r p lanning and implementing pat ient education that w i l l a s s i s t pa t ients to cope with the chemotherapy experience. Impl icat ions for Nursing P r a c t i c e and Education The f ind ings of t h i s study have imp l ica t ions fo r both nurs ing p r a c t i c e and educat ion. Nurses need to recognize that p r o f e s s i o n a l s and pa t ien ts may d i f f e r s i g n i f i c a n t l y in t h e i r percept ions of p a t i e n t s ' l ea rn ing needs. Pa t ien ts b r ing a unique set of s k i l l s and knowledge to the treatment exper ience. P r o f e s s i o n a l s should assess p a t i e n t s ' needs, exper ience, and p r i o r i t i e s i n d i v i d u a l l y i n c o l l a b o r a t i o n with pa t ien ts themselves. Th is w i l l enhance the accuracy of the needs assessment and 92 and a s s i s t patients to mobilize f a m i l i a r problem-solving s k i l l s i n a new s e t t i n g . Patients undergoing chemotherapy treatment focus many of t h e i r learning needs around the diagnosis and treatment of t h e i r cancer, and may be most concerned with present-oriented s u r v i v a l concerns. Nurses need to consider t h i s i n planning the content and timing of patient education. Nurses involved i n teaching chemotherapy patients require a sound understanding of the purposes and action of chemotherapy, and the a b i l i t y to explain t h i s i n terms patients can understand. Patients may be helped by information that professionals have perceived as "too complex." Nurses also require s k i l l i n a s s i s t i n g patients to i d e n t i f y and minimize side e f f e c t s of chemotherapy treatment. Nurses and physicians should regard the assessment of learning needs as an on-going a c t i v i t y , recognizing the need for follow-up and reinforcement of learning. More attention should be devoted to the preparation of written materials for patients which deal with t h e i r expressed concerns. To a s s i s t professionals to provide e f f e c t i v e patient education based on the perceived needs of patients, adult learning theory should be incorporated i n t o the c u r r i c u l a of professionals who provide information and education to cancer patients r e c e i v i n g chemotherapy. Recommendations for Further Study 1. Further study i s needed to investigate the influence of diagnostic and other demographic variables on the perceptions of patients' learning needs. A q u a l i t a t i v e methodology might lend i t s e l f to obtaining more information about i n d i v i d u a l learning needs and the r a t i o n a l e patients 93 have f o r choosing and o r d e r i n g them. 2. The perceived l e a r n i n g needs experienced by p a t i e n t s before they begin chemotherapy treatment should be s t u d i e d t o f a c i l i t a t e the planning of pre-chemotherapy teaching which addresses the needs of p a t i e n t s . 3. Family members and f r i e n d s of p a t i e n t s r e c e i v i n g chemotherapy report having l e a r n i n g needs which they b e l i e v e nurses and p h y s i c i a n s could a s s i s t them i n meeting. These l e a r n i n g needs should be i d e n t i f i e d and s t u d i e d , i n order t o improve p a t i e n t s ' support systems. 4. 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Todres, R. and Wojt iuk, R. (1979). The cancer p a t i e n t ' s view of chemotherapy. Cancer Nurs ing , 2, 283-286. V o l i c e r , B. (1974). P a t i e n t s ' percept ions of s t r e s s f u l events assoc ia ted with h o s p i t a l i z a t i o n . Nursing Research, 23, 235-238. Weisman, A. and Worden, J . (1976). The e x i s t e n t i a l p l i g h t i n cancer: S i g n i f i c a n c e of the f i r s t 100 days. In te rna t iona l Journal of  Psych ia t ry i n Medic ine, 1_, 1-15. Welch-McCaffrey, D. (1985). Evo lv ing pat ient education needs in cancer . Oncology Nursing Forum, Y2(5) , 62-66. Welch-McCaffrey, D. (1986). To teach or not to teach? Overcoming b a r r i e r s to pa t ient educat ion in g e r i a t r i c oncology. Oncology  Nursing Forum, 1_3(4), 25-31. Wi l l i ams , S. (1981). Teaching the cancer pat ient and fami ly how to cope with the d iagnosis and chemotherapy. In M. Donovan ( E d . ) , Cancer ca re : A guide fo r pa t ient education (pp. 123-136). New York: App le ton -Century -Cro f ts . Winslow, E . (1976). The ro le of the nurse i n pa t ient educat ion. Nursing C l i n i c s of North America, V K 2 ) , 213-222. Wise, P. (1979). B a r r i e r s (or enhancers) to adul t pa t ient educat ion. Journa l of Cont inuing Education i n Nurs ing, 10(6), 11-16. 99 A p p e n d i x A : A s s e s s m e n t o f L e a r n i n g ( P a t i e n t Needs Q u e s t i o n n a i r e Form) 100 Note to Study P a r t i c i p a n t s : Th is quest ionnaire i s a general one that has been used with people r e c e i v i n g a v a r i e t y of chemotherapy treatments. The s ide e f f e c t s mentioned s p e c i f i c a l l y i n t h i s quest ionnaire are examples which may not apply to your chemotherapy treatment. Any quest ions you have regarding your treatment or s ide e f f e c t s should be d iscussed with your c l i n i c doctor . You have read the "Information for Study P a r t i c i p a n t s " and have had an opportuni ty to d iscuss the study with the researcher . Take some time now to ask any fur ther quest ions you may have. 101 P r i v i l e g e d Communication Lauer , Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) Assessment of Learning Needs: Oncology Sect ion I: P a t i e n t ' s Rating Scale Please rate each of the fo l lowing in format iona l items as to the degree of importance i t has fo r you. Please c i r c l e one number fo r each i tem. Degree of Importance The pat ient needs to know: None or very l i t t l e A A great l i t t l e Some l o t deal How to care fo r yourse l f at home and at work The plan of treatment decided upon by your phys ic ian 3. The symptoms of r e c u r r i n g i l l n e s s 4. Your d iagnosis 5. How other pat ients having s i m i l a r problems deal with t h e i r problems 2 2 3 3 4 4 5 5 Medications/Chemotherapy A. Purpose of chemotherapy medications B. Names of your medications C. A c t i o n s , what they do, how they work 2 2 3 3 4 4 5 5 D. Schedule f o r r e c e i v i n g medications ( for example, number of days r e c e i v i n g and number of days in between r e c e i v i n g medications) 102 P r i v i l e g e d Communication Lauer , Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) E . Length of time you must rece ive medications H. Side e f f e c t s a n t i c i p a t e d , problems with your medications How to minimize any side e f f e c t s which may occur due to your medications Whether your medications w i l l be given as p i l l s , i n j e c t i o n s , or i n t r a -venously 7. N u t r i t i o n A. How to choose foods to help you maintain your weight B. How to minimize problems with loss of a p p e t i t e , nausea or vomit ing C. D ietary supplements ( for example, Ensure or Sustecal ) D. How to decrease problems with b leeding gums, sore th roa t , or any other problems you may be exper iencing with your l i p s , mouth, or throat E . Recipes fo r h i g h - c a l o r i e , h i g h - p r o t e i n meals and/or snacks None or very l i t t l e A l i t t l e Some A l o t A great deal 8. The amount of exerc ise you should have 1 2 3 4 5 103 P r i v i l e g e d Communication Lauer , Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) None or very l i t t l e A l i t t l e Some l o t A great deal 9. The type and amount of work you can do around the house ( for example, cooking or car repa i r ) 10. Whether you are able to work at a job f u l l - t i m e , par t - t ime , or not at a l l 11. The a v a i l a b i l i t y of c lubs or organizat ions for pat ients with problems s i m i l a r to yours 12. The a v a i l a b i l i t y of f i n a n c i a l ass is tance fo r home care , medicat ions, or treatments, and so on 13. The reason for blood t e s t i n g 14. The reasons fo r any d iagnost ic t e s t you rece ive 15. The procedure fo r any d iagnost ic t e s t you rece ive 16. What you w i l l experience as the d iagnos t ic t e s t i s being done 2 2 3 3 4 4 5 5 17. How to t a l k to your fami ly and/or f r i ends about your i l l n e s s , p l a n s , or any other concerns you may have 104 P r i v i l e g e d Communication Lauer, Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) P a t i e n t s ' Ranking Scale 1. Some studies have ind ica ted that many pat ients have problems in the fo l lowing areas . Which of these areas do you f i n d the most problematic? Answer t h i s by ranking each of these areas from 1 to 6, with 1 represent ing the problem which i s most d i f f i c u l t fo r you; 2, the second most d i f f i c u l t , and so f o r t h . N u t r i t i o n Minimiz ing the s ide e f f e c t s of chemotherapy Recreat iona l and/or work a c i t i v i t i e s Re la t ionsh ips with family members and/or f r i ends Understanding the ac t ion of chemotherapy Deal ing with your own f e e l i n g s 2. Which of these same areas do you have the most knowledge about? Answer t h i s quest ion by ranking each of the areas from 1 to 6, with 1 represent ing the t o p i c you have the most knowledge about; 2, the second most knowledge, and so f o r t h . N u t r i t i o n Minimiz ing the s ide e f f e c t s of chemotherapy Recreat iona l and/or work a c t i v i t i e s Re la t ionsh ips with fami ly members and/or f r i ends Understanding the ac t ion of chemotherapy Dea l ing with your own f e e l i n g s P r i v i l e g e d Communication Lauer, Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) 3. Which of these same areas do you want the most informat ion about? Answer t h i s quest ion by ranking each of the areas from 1 to 6, with 1 represent ing the area that you want the most informat ion about; 2, the area that you want the second most informat ion about; and so f o r t h . N u t r i t i o n Minimiz ing the s ide e f f e c t s of chemotherapy Recreat iona l and/or work a c t i v i t i e s Re la t ionsh ips with fami ly members and/or f r i ends Understanding the ac t ion of chemotherapy Dea l ing with your own f e e l i n g s A p p e n d i x B: e s s m e n t o f L e a r n i n g N e e d s Q u e s t i o n n a i r e ( S t a f f Form) 107 P r i v i l e g e d Communication Lauer , Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) Assessment of Learning Needs: Oncology Sect ion II: S ta f f Members' Rat ing Scale Please rate each of the fo l low ing in format iona l items as to the degree of importance i t has fo r the cancer p a t i e n t . (Exclude both pa t ien ts who are newly diagnosed and those in the terminal stage of t h e i r i l l n e s s . ) Please c i r c l e one number fo r each i tem. Degree of Importance The pat ient needs to know: None or very l i t t l e A l i t t l e Some A l o t great deal How to care fo r himself at home and at work The plan of treatment decided upon by h i s phys ic ian 3. The symptoms of r e c u r r i n g i l l n e s s 4. His d iagnosis 5. How other pa t ien ts having s i m i l a r problems deal with t h e i r problems 2 2 3 3 4 4 5 5 Medications/Chemotherapy A. Purpose of chemotherapy medications B. Names of h i s medications C. A c t i o n s , what they do, how they work 2 2 3 3 4 4 5 5 Schedule fo r r e c e i v i n g medications ( for example, number of days r e c e i v i n g and number of days in between r e c e i v i n g medications) 108 P r i v i l e g e d Communication Lauer , Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) E . Length of time he must rece ive medications F. Side e f f e c t s a n t i c i p a t e d , problems with h i s medications G. How to minimize any side e f f e c t s which may occur due to h is medications H. Whether h i s medications w i l l be given as p i l l s , i n j e c t i o n s , or i n t r a -venously N u t r i t i o n A. How to choose foods to help him maintain h is weight B. How to minimize problems with loss of a p p e t i t e , nausea or vomit ing C Dietary supplements ( for example, Ensure or Sustecal ) D. How to decrease problems with b leeding gums, sore th roa t , or any other problems he may be exper ienc ing with h is l i p s , mouth, or throat E . Recipes fo r h i g h - c a l o r i e , h igh -p ro te in meals and/or snacks None or very l i t t l e A l i t t l e Some A l o t A great deal The amount of exerc ise he should have 109 P r i v i l e g e d Communication Lauer , Murphy, Powers Un ive rs i t y of I l l i n o i s , Chicago (Used with permission) None A or very A A great l i t t l e l i t t l e Some l o t deal The type and amount of work he can do around the house ( for example, cooking or car repa i r ) 10. Whether he i s able to work at a job f u l l - t i m e , par t - t ime , or not at a l l 11. The a v a i l a b i l i t y of c lubs or organiza t ions for pat ients with problems s i m i l a r to h is 1 2 3 4 5 12. The a v a i l a b i l i t y of f i n a n c i a l ass is tance fo r home c a r e , medicat ions, or treatments, and so on 1 2 3 4 5 13. The reason fo r blood t e s t i n g 14. The reasons for any d iagnost ic t e s t he rece ives 15. The procedure f o r any d iagnost ic t e s t he rece ives 16. What he w i l l experience as the d iagnost ic t e s t i s being done 17. How to t a l k to h i s fami ly and/or f r i ends about h is i l l n e s s , p l a n s , or any other concerns he may have 1 2 3 4 5 P r i v i l e g e d Communication Lauer, Murphy, Powers University of I l l i n o i s , Chicago (Used with permission) Staff Members' Ranking Scale 1. Some studies have indicated that many patients have problems i n the following areas. Which of these areas do you think patients f i n d the most problematic? Answer t h i s by ranking each of these areas from 1 to 6, with 1 representing the problem which i s most d i f f i c u l t f o r patients, 2, the second most d i f f i c u l t , and so f o r t h . N u t r i t i o n Minimizing the side e f f e c t s of chemotherapy Recreational and/or work a c i t i v i t i e s Relationships with family members and/or friends Understanding the action of chemotherapy Dealing with fee l i n g s 2. Which of these same areas do you think patients have the most knowledge about? Answer t h i s question by ranking each of the areas from 1 to 6, with 1 representing the topi c patients have the most knowledge about; 2, the second most knowledge, and so f o r t h . N u t r i t i o n Minimizing the side e f f e c t s of chemotherapy Recreational and/or work a c t i v i t i e s Relationships with family members and/or friends Understanding the action of chemotherapy Dealing with fee l i n g s 111 P r i v i l e g e d Communication Lauer , Murphy, Powers U n i v e r s i t y of I l l i n o i s , Chicago (Used with permission) 3. Which of these same areas do you th ink pat ients want the most information about? Answer t h i s quest ion by ranking each of the areas from 1 to 6, with 1 represent ing the area that you th ink pa t ien ts want the most informat ion about; 2, the area that pat ients want the second most informat ion about; and so f o r t h . N u t r i t i o n Minimiz ing the s ide e f f e c t s of chemotherapy Recreat iona l and/or work a c t i v i t i e s Re la t ionsh ips with fami ly members and/or f r i ends Understanding the ac t ion of chemotherapy Deal ing with f e e l i n g s A p p e n d i x C : D e m o g r a p h i c Q u e s t i o n n a i r e ( P a t i e n t s ) 113 Learning Needs of Cancer Pa t ien ts Receiv ing Chemotherapy Interview Data: 1. Age: 18-30 years 61-75 years _31-45 years 46-60 years over 75 years 2. Sex: Male Female 3. D iagnos is : 4. Educat iona l background: 5. M a r i t a l s t a t u s : 6. Occupation: 7. Employment s t a t u s : F u l l - t i m e Par t - t ime On leave Unemployed 8. Chemotherapy Protocol :_ 9 . Number of chemotherapy treatments completed to date: 114 10. Length of time s ince beginning chemotherapy: 11. Please l i s t any top ic areas you f e e l are important to people r e c e i v i n g chemotherapy that are not covered i n the quest ionna i re . 12. Any other comments you would l i k e to add? A p p e n d i x D: D e m o g r a p h i c Q u e s t i o n n a i r e ( N u r s e s ) 116 Learning Needs of Cancer Pa t ien ts Receiv ing Chemotherapy Please complete the fo l low ing in format ion: 1. Educat ional background: R.N. B . S . N . M.S.N. Other (Please s p e c i f y ) : 2. Number of years of p r a c t i c e i n nurs ing : 3. Length of time i n oncology nurs ing : 4. P r a c t i c e s e t t i n g : H o s p i t a l un i t Ambulatory care 5. Please l i s t any t o p i c areas you f e e l are important to people r e c e i v i n g chemotherapy that are not covered i n the quest ionna i re : 6. A d d i t i o n a l comments: A p p e n d i x E : D e m o g r a p h i c Q u e s t i o n n a i r e ( P h y s i c i a n s ) Learning Needs of Cancer Pa t ien ts Receiv ing Chemotherapy Please complete the fo l low ing in format ion: 1. Number of years of p r a c t i c e i n medicine: 2. Length of time i n medical oncology: 3. Please l i s t any t o p i c areas you f e e l are important to people r e c e i v i n g chemotherapy that are not covered i n the quest ionnaire 4. A d d i t i o n a l comments: A p p e n d i x F : S t a f f I n f o r m a t i o n L e t t A p p e n d i x G : P a t i e n t I n f o r m a t i o n L e t t e r A p p e n d i x H: S t a f f C o n s e n t Form 124 Consent Form Consent to P a r t i c i p a t e i n the Research Study Conducted by Karen Matheson, R.N. Learning Needs of Cancer Pa t ien ts Receiv ing Chemotherapy: P a t i e n t , Nurse, and Phys ic ian Percept ions I, , agree to p a r t i c i p a t e i n the research study conducted by Karen Matheson. I understand that t h i s study concerns information needs of cancer pat ients r e c e i v i n g chemotherapy and that my p a r t i c i p a t i o n w i l l invo lve the completion of two ques t ionna i res . I understand that my name or any other i d e n t i f y i n g informat ion w i l l not be used i n the study or i n any future p u b l i c a t i o n of the f i n d i n g s . I understand that there are no known r i s k s or bene f i t s in p a r t i c i p a t i n g in t h i s study. I understand that my p a r t i c i p a t i o n i s voluntary and that I am f ree to withdraw from the study at any time without consequence. I acknowledge that I have rece ived a l e t t e r of informat ion and a copy of t h i s consent form. (Signature of P a r t i c i p a n t ) (Date) (Signature of Witness) A p p e n d i x I : P a t i e n t C o n s e n t Form 126 Consent Form Consent to P a r t i c i p a t e i n the Research Study Conducted by Karen Matheson, R.N. Learning Needs of Cancer Pat ients Receiv ing Chemotherapy: P a t i e n t , Nurse, and Phys ic ian Percept ions 1/ , agree to p a r t i c i p a t e in the research study conducted by Karen Matheson. I understand that t h i s study concerns informat ion needs of cancer pat ients r e c e i v i n g chemotherapy and that my p a r t i c i p a t i o n w i l l invo lve a b r i e f interv iew and completion of a wr i t ten ques t ionna i re . I understand that my name or any other i d e n t i f y i n g informat ion w i l l not be used i n the study or i n any future p u b l i c a t i o n of the f i n d i n g s . I understand that there are no known r i s k s or b e n e f i t s i n p a r t i c i p a t i n g i n t h i s study. I understand that my p a r t i c i p a t i o n i s vo luntary , that I am f ree to withdraw from the study at any t ime, and that my d e c i s i o n to do so w i l l i n no way a f f e c t my care or treatment at t h i s agency. I acknowledge that I have rece ived a l e t t e r of informat ion and a copy of t h i s consent form. (Signature of P a r t i c i p a n t ) (Date) (Signature of Witness) 127 A p p e n d i x J : C h e m o t h e r a p y P r o t o c o l I n f o r m a t i o n 128 APPENDIX J Chemotherapy Pro toco l Information The pa t ien ts with Hodgkin's disease rece ived treatment with one of two chemotherapy p r o t o c o l s : 1) n i t rogen mustard and v i n c r i s t i n e given in t ravenously on Day 1, with prednisone o r a l l y d a i l y fo r 14 days and procarbazine d a i l y f o r seven days; fo l lowed by doxorub ic in , bleomycin, and v i n b l a s t i n e in t ravenously on day 8 (MOPP/ABV); or 2) n i t rogen mustard and v i n c r i s t i n e on days 1 and 8, with prednisone and procarbazine d a i l y fo r 14 days, a l t e r n a t i n g with doxorub ic in , bleomycin, v i n b l a s t i n e , and DTIC, given on days 1 and 15 (MOPP/ABVD). In t h i s study, s i x pa t ien ts were t reated with the MOPP/ABV combination, and two with MOPP/ABVD. One respondent, however, was t rea ted with a unique combination of drugs due to the complexi t ies of h is medical c o n d i t i o n . Pa t ien ts on MOPP/ABV or MOPP/ABVD pro toco ls usua l ly rece ive e ight c y c l e s of chemotherapy, over a per iod of approximately seven months. Pa t ien ts r e c e i v i n g chemotherapy fo r non-Hodgkin's lymphomas are t reated weekly fo r a per iod of s i x to twelve weeks, with one of the fo l low ing three p r o t o c o l s : 1) VP-16, doxorub ic in , cyclophosphamide, v i n c r i s t i n e , and bleomycin in t ravenous ly , and prednisone o r a l l y (VACOP-B ) ; 2) doxorub ic in , cyclophosphamide, v i n c r i s t i n e , and bleomycin in t ravenously and o r a l prednisone (ACOP-B); or 3) VP-16, doxorub ic in , cyclophosphamide, v i n c r i s t i n e , bleomycin, and c i s - p l a t i n u m in t ravenous ly , and o r a l prednisone (VACOP-BP). Pat ients on any of these pro toco ls take prednisone and p rophy lac t i c a n t i m i c r o b i a l s (cotrimoxazole and ketoconazole) d a i l y throughout the s i x to twelve week treatment p e r i o d . E ight pa t ien ts rece ived treatment with VACOP-B, two with VACOP-BP, and one with ACOP-B. A p p e n d i x K: Mean R a t i n g s of Responses t o ALNQ R a t i n g S c a l e Items 130 APPENDIX K Mean Ratings of Responses to ALNQ Rating Scale Items Rating Scale Item Pat ients (n=20) m SD Nurses (n=24) m SD Phys ic ians (n=10) m SD S i g n i f i c a n c e (ns = not s i g n i f i c a n t , where p>.05) 4.40 1. How to care fo r yourse l f (himself) at home and at work 2. The plan of treatment decided upon by your (his) phys ic ian 3. The symptoms of r e c u r r i n g i l l n e s s 4. Your (His) d iagnosis 5. How other pa t ien ts having s i m i l a r problems deal with t h e i r problems 6. Med ica t ions / Chemotherapy A. Purpose of medications B. Names of your (his) medications C A c t i o n s , what 4.20 they do, how they work D. Schedule fo r 4.20 r e c e i v i n g medications E . Length of time 4.35 you (he) must rece ive medications F. Side e f f e c t s 4.65 a n t i c i p a t e d , problems with your (his) medications 3.75 1.21 4.29 .81 4.50 .53 .88 4.40 1.05 4.35 1.04 3.40 1.05 4.60 .68 3.40 1.19 .89 .95 1.04 .75 4.25 .79 3.29 1.27 4.29 .75 3.71 .86 3.96 .81 3.21 1.14 3.04 1.16 4.33 .92 4.42 .50 4.54 .72 4.40 .52 3.70 4.90 3.96 .95 .32 .81 4.40 .52 4.20 .42 4.40 .52 ns ns .0052 ns ns 4.60 .52 .0108 3.70 1.06 ns 2.90 .74 .0005 ns ns ns 131 Rating Scale Item Pat ien ts Nurses Phys ic ians S i g n i f i c a n c e (n=20) (n=24) n=10 (ns = not m SD m SD m SD s i g n i f i c a n t , where p>.05 G. How to minimize any s ide e f f e c t s which occur due to your (his) medications H. Whether your (his) medications w i l l be given as p i l l s , i n j e c t i o n s , or in t ravenously 4.55 .69 3.35 1.18 4.67 .64 4.12 .80 4.70 .48 ns 4.10 .57 ns 7. N u t r i t i o n A. How to choose 3.10 1.25 foods to help you (him) maintain your (his) weight B. How to minimize problems with l o s s of a p p e t i t e , nausea or vomit ing C. D ietary 2.60 1.31 supplements ( for example, Ensure or Sustecal ) D. How to 3.55 1.47 decrease problems with b leeding gums, sore th roa t , or any other problem you (he) may experience with your (his) l i p s , mouth, or throat E . Recipes fo r 2.85 1.57 high c a l o r i e , high pro te in meals and/ or snacks 8. The amount of exerc ise you (he) should have 9. The type and amount of work you (he) can do around the house, ( for example, cooking or car repa i r ) 3.60 1.19 2.95 .95 4.08 4.46 .72 3.70 .1.30 4.50 .59 3.50 .98 .78 3.46 .98 3.29 1.08 3.54 .83 3.80 .63 4.20 .63 .0175 ns 3.40 .97 4.10 .88 ns ns 3.40 .97 ns 3.40 .52 3.40 .52 ns ns 132 Rat ing Scale Item Pat ients Nurses Phys ic ians S i g n i f i c a n c e (n=20) (n=24) (n=10) (ns = not m SD m SD m SD s i g n i f i c a n t , where p>.05 10.Whether you are 3.55 1.50 4.33 .82 4.00 .67 ns (he i s ) able to work at a job f u l l t ime, par t - t ime , or not at a l l 11. The a v a i l a b i l i t y 3.30 1.66 3.58 1.06 3.30 .82 ns of c lubs or organizat ions fo r pa t ien ts with problems s i m i l a r to yours (his) 12. The a v a i l a b i l i t y 2.75 1.16 3.96 1.08 4.30 .82 .0007 of f i n a n c i a l ass is tance for home care , medicat ions, or treatments, and so on. 13. The reason for 3.80 .95 3.75 .94 3.70 .67 ns blood t e s t i n g 14. The reasons fo r 4.15 1.09 3.96 1.00 4.10 .74 ns any d iagnost ic t e s t you (he w i l l ) rece ive 15.The procedure 4.05 1.15 3.92 1.02 3.60 .70 ns fo r any d iagnost ic t e s t you (he w i l l ) rece ive 16.What you (he) 4.10 1.12 4.13 .90 3.90 .74 ns w i l l experience as the d iagnost ic t e s t i s being done 17.How to t a l k to 2.90 1.37 4.25 1.03 3.80 .92 .0035 your (his) fami ly and/or f r i ends about your (his) i l l n e s s , p l a n s , or any other concerns you (he) may have 

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