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Compliance re-examined : a study of nurses’ perceptions of and responses to in-hospital maintenance hemodialysis… Gaudet, Denise Marie 1992

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to the required standardCompliance re-examined: A study of nurses' perceptions ofand responses to in-hospital maintenance hemodialysispatients whom nurses perceived to be noncompliantbyDENISE MARIE GAUDETB.N., Dalhousie University, 1988A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIESSchool of NursingWe accept this thesis as conformingTHE UNIVERSITY OF BRITISH COLUMBIAOctober, 1992© Denise Marie GaudetDateIn presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shall make itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed without my writtenpermission.(Signature)Department of ^eAA4-( tit The  University of British ColumbiaVancouver, CanadaDE-6 (2/88)iiAbstract The respective rights and responsibilities of the nurseand the patient may be a source of conflict as nurses andpatients do not always agree on behaviors and attitudesnecessary for adjustment to life on hemodialysis. Theinvestigator had observed that hemodialysis nurses'responses to patients who deviate from the recommendedmedical regime varied significantly. The question arose asto why there are differences in nurses' responses toperceived noncompliant patient behaviors.Only one study was found which examined emotionalreactions and behaviors of nurses as part of amultidisciplinary hemodialysis team, toward their patients(Kaplan De-Nour & Czackes, 1968). The purpose of this studywas to investigate specifically hemodialysis nurses'perceptions of noncompliant in-hospital maintenancehemodialysis patient behaviors and their responses to suchpatient behaviors.A phenomenological research method was used to explorenurses' lived experience of caring for hemodialysispatients. Eight nurses were selected as participants forthe study from hemodialysis units in two hospitals from theLower Vancouver Mainland area. These nurses participated inone to three audiotaped interviews using open-endedquestions. Data collection and analysis occurredconcurrently following Colaizzi's (1978) method of analysis.iiiField notes and verbatim transcriptions of the audiotapesinterviews were used as data for analysis.The process of labelling and judging compliant ornoncompliant patients was unique to each nurse and waslinked with the degree of congruence between nurses' andpatients' expectations and the nurses' sense of empowermentor powerlessness. There were two sources of empowerment orpowerlessness: nurse-patient relationships and the workplace. The key factor which seemed to determine the natureof nurse-patient relationships the notion of reciprocity wasbased on shared responsibility with patients and mutualrespect. In terms of the work environment, mutual concernand support from peers and colleagues contributed to nurses'sense of empowerment. Nurses' perceived lack of controlover work place conditions caused them to feel powerless.Nurses used several coping strategies to deal with theirfeelings of powerlessness.Discussion of the findings occurs in conjunction withrelevant literature. Implications for nursing practice,nursing administration, and nursing education areidentified. Finally, further research suggestions are made.ivTable of ContentsPageAbstract  ^iiTable of Contents  ^ivAcknowledgements  ^viiCHAPTER ONE: INTRODUCTION  ^1Background to the Problem  ^1Problem Statement  ^2Conceptualization of the Problem^ 4Purpose of the Study  ^6Definition of Terms  ^6Assumptions  ^7Limitations  ^7CHAPTER TWO:REVIEW OF THE LITERATURE  ^8Introduction  ^8Terminology to Describe Patient Behavior^. • • 8Conceptual Models  ^13Factors Influencing Patient Behavior  ^15Health Professionals' Attitudes  ^19Summary  ^22CHAPTER THREE: METHODS  ^23Introduction  ^23Selection of the Study Group  ^24Sample Selection  ^24Criteria for Participation  ^25Procedure for Participant Selection  ^26Ethical Considerations  ^27Data Collection Procedure  ^28Data Analysis  ^30Summary  ^33CHAPTER FOUR: PRESENTATIONS AND DISCUSSION OF ACCOUNTS^35Introduction  ^35Characteristics of the Participants  ^37Nurses' Experience of Providing Care  ^38Nurses' Perspectives of Patients' IllnessExperiences  ^38Taking Challenges into Account  ^38Describing Patient Coping with End StageRenal Failure  ^39Imagining What It Must Be Like  ^40Nurses' Perspectives of the Dialysis Regime  ^ 43Beliefs About the Regime  ^43Drawing the Line  ^44VMaking Exceptions  ^46Managing Patients' Illness Most Effectively  ^ 47Defining Compliance  ^48Defining Noncompliance  ^48Noncompliance: An Inappropriate Term^50Processes of Judging and LabellingPatient Behaviors  ^52Nurses' Sense of Empowerment or Powerlessness^53Feeling Empowered  ^53Empowerment Brings Satisfaction .^• •^55Powerlessness  ^57Emotional Impact of Feeling Powerless^59Conflicting Treatment PhilosophiesFurther Increase Powerlessness  ^60Sources of Empowerment and Powerlessness^62Empowerment in the Work Place  ^62Nurse-Patient Relationships  ^63Elements of nurse-patientrelationships perceived aspositive  ^65Elements of nurse-patientrelationships perceived asdifficult  ^71Organizational Constraints  ^82Disruptive patient behavior . .  ^83Lack of control  ^85Coping With Powerlessness  ^87Strategies to Work Effectively WithinConstraints of theOrganization  ^88Turning to Colleagues  ^90Using Guidelines  ^91Reconciling Feelings of Powerlessness inNurse-patientRelationships  ^93Modifying patient goals.^93Reevaluating patient approaches .  ^ 93Summary Statement  ^95CHAPTER FIVE: SUMMARY, CONCLUSIONS, IMPLICATIONS ANDRECOMMENDATIONS FOR FURTHER STUDY  ^98Summary  ^98Conclusions  ^102Implications  ^104Nursing Practice  ^104Administrative Support For Nursing Practice^112Nursing Education  ^114Nursing Research  ^121References  ^125Appendix A  ^133Appendix BAppendix CAppendix DAppendix Evi134135136137viiAcknowledgements The achievement of this endeavor was made possible withthe support and direction of many people. To begin, I wouldlike to acknowledge the members of my thesis committee, Dr.Anna Marie Hughes, Chairperson, Judith Lynam, Wendy Hall,and Dr. Carol Jillings for their inspiration andencouragement throughout the research process. Secondly, Iwould like to thank the eight nurses who participated inthis study for their interest and willingness to share theirexperience. Finally, I would like to thank my family andfriends who were always there for me.1CHAPTER ONE: INTRODUCTIONBackground to the ProblemThe changing patterns of contemporary illnesses, fromacute to chronic, have increased dramatically since the1940's in light of altered patterns of medical care andtechnology (Fagerhaugh, Strauss, Suczek, & Wiener, 1980).There is general agreement among patients, families, andhealth care providers that chronic illness has a tremendousimpact on individuals and their families (Rolland, 1987;Collier, 1990; Thorne, 1990). Effective management ofpatients with chronic illness requires lifestyle changes andalterations in daily activities (Starzomski, 1987; Gutch &Stoner, 1983) as part of an entire regimen of treatmentmodalities.The regimen necessary in the management of patientswith end-stage renal failure is complex. Such a regimencommonly consists of strict fluid and dietary restrictions,multiple medications, a decrease in the level of physicalactivity and, regular, on-going dialysis (O'Brien, 1980a;Gutch & Stoner, 1983). Dialysis, specifically hemodialysis,is an effective means of removing metabolic waste and toxicfluid but it is not a cure for end stage renal disease(Cummings, Becker, Kirscht, & Levin, 1982). Patients onin-hospital maintenance hemodialysis usually spend three tofive hours on a dialysis machine, two to three times perweek. This very demanding dialysis regime is usually2maintained indefinitely until such time as a renaltransplant becomes available and is feasible, based on thepatient's health status. Some health care providers arguethat successful medical management of end stage renalfailure greatly depends upon patients' participation in andcompliance with all aspects of the recommended medicalregimen (Kaplan De-Nour & Czaczkes, 1968).Problem StatementSmith (1986) contends that the goal of hemodialysisnursing is to achieve the best possible patient healthstatus while demonstrating nursing competence and that toachieve this goal, the nurse must protect the patient from"succumbing to future threats to his health" (p. 22). If weaccept this contention, then hemodialysis nurses mustprovide not only complex technical care to patients but alsocontribute knowledge and assist patients to develop skillswhich patients need to participate in the management oftheir illness (Smith, 1986).In the process of determining patient responsibilitiesand nursing care activities, nurses are expected to helppatients establish expectations that are mutually acceptableto both the nurse and the patient (Canadian NursesAssociation, 1987). Furthermore, nurses are expected tonegotiate "through any discrepancy in the expectations untilthey are understood and acceptable to both the client andthe nurse" (CNA, 1987, p. 3). Smith (1986) advocates that3mutual problem-solving is a necessary component of everyphase of the nursing process during which the nurse mustrespect patients' rights and obligations for self-careactivities. However, the respective rights andresponsibilities of the nurse and the patient in thislong-term relationship may be a source of conflict for bothparties. Nurses and patients do not always agree onbehaviors and attitudes necessary for adjustment to life onhemodialysis (Huber & Tucker, 1984).In caring for patients on maintenance hemodialysis,this investigator has observed that many of these patientsare inconsistent in following the recommended medicalregimen despite frequent teaching and counselling providedby nurses. Frequently, health professionals label thesepatients noncompliant. This observation is consistent withresearch in the field of chronic illness which indicatesthat 50% of the patients exhibit this type of behavior(Rosenberg, 1976; Haynes, 1976; Kaplan De-Nour & Czaczkes,1972). Nevertheless, nurses are expected to reach anagreement with the patient so that he/she will follow therecommended medical regimen (Canadian Nurses Association,1987). Herein lies the dilemma for hemodialysis nurses.Wolfsen (1989) has examined acute care nurses' viewsand factors affecting acute care nurses' perceptions ofhemodialysis patients. This study also identified a widedisparity in nurses' perceptions of care from challenging to4problematic and unrewarding. The investigator has observedhow various hemodialysis nurses have responded toin-hospital maintenance hemodialysis patients who deviatefrom the recommended medical regimen. These responses rangefrom overtly expressing anger, resentment, and frustrationto adopting an attitude of detachment or disengagementtowards patients whose behaviors nurses perceive to benoncompliant. In contrast, other hemodialysis nursesrespond by seeking to understand the reasons for theperceived noncompliant patient behavior, and expressingconcern and compassion towards these patients. Therefore,the question arises as to why there are differences innurses' responses to perceived noncompliant patientbehavior?Kleinman's (1978a) health care system framework wasused to examine this question because it acknowledges thatpatients and health professionals view the illnessexperience from different perspectives.Conceptualization of the ProblemKleinman (1978a) proposes "most health care systemscontain three social arenas within which sickness isexperienced and reacted to" (p. 86). These social arenasconsist of the popular, folk, and professional sectors, eachof which is depicted as a cultural system, guided not onlyby meaning and behavioral norms but by rules within it.The management of the illness experience in the popular5arena is influenced by a patient's family setting, thesocial network, and the community. Non-professional healingspecialists constitute a second social arena, the folkarena. These two social arenas are thought to have the mostsignificant influence on patients' perceptions as to thecause and management of their sickness, which Kleinman(1978b) refers to as the patient's explanatory model.The professional arena comprises professionalscientific medicine and professionalized indigenous healingtraditions.^While indigenous healing traditions focus onthe management of psychosocial and social problems relatedto illness, professionals tend to have a view of patients'sickness which is strongly influenced by the biomedicalmodel. The primary concern of the professional arena is therecognition and treatment of disease and is referred to asthe physician's explanatory model (Kleinman, 1978b).Although hemodialysis nurses are concerned with patients'psychosocial adaptation to life on dialysis, they frequentlycan be seen to adopt the physician's explanatory model whenreinforcing the recommended medical regimen to treat thebiological aspects of patients' illness.According to Kleinman (1978a), patients andprofessionals disclose their respective perceptions andapproaches to patient illness through the process ofinteraction. It is through the interactive process thatdiscrepancies in values, expectations and goals for clinical6management of patients' illnesses arise.The researcher was directed by this framework toinvestigate the meaning of the experience of hemodialysisnurses in caring for patients whose behavior they perceiveto be noncompliant. This approach also provides directionfor the researcher to investigate nurses' perceptions ofthat meaning's effect on their interaction with thesepatients.Purpose of the StudyThe purpose of this study was to investigate and describehow hemodialysis nurses perceived noncompliance of patientsreceiving in-hospital maintenance hemodialysis. Further,this study also sought to describe how these perceptionsaffected hemodialysis nurses' responses to patients whosebehavior they perceived to be noncompliant.Definition of TermsFor the purpose of this study, the following terms weredefined:(1) In-hospital maintenance hemodialysis: "therepetitive dialysis procedures necessary to keep a personwith end-stage renal disease alive and as healthy aspossible" (Gutch & Stoner, 1983, p. 137).(2) Nurses: registered nurses employed in ahemodialysis unit of an acute care hospital.(3) Patients: individuals who are receiving in-hospitalhemodialysis.7(4) Treatment regimen: Aspects of medically prescribedtreatment and/or prescriptions provided by any member of thehemodialysis health care team as defined by the nursescaring for the patients.(5) Noncompliance: Patient behaviors which nursesperceive as inconsistent with the treatment regimen and asinterfering with the treatment goals.AssumptionsThis study was conducted based on two assumptions. Thefirst assumption of this study was that a hemodialysis nurseis able to articulate his/her beliefs and expectations aboutpatient participation in decision-making and management ofhis or her chronic illness. Secondly, it is assumed that ahemodialysis nurse is able to speak to the effects of thosebeliefs on the experience of providing care to end-stagerenal failure, in-hospital maintenance hemodialysispatients.LimitationsThe nature of a qualitative study such as this doesnot seek to create findings that can be generalized to thepopulation of nurses working with in-hospital maintenancehemodialysis patients. Therefore, the nature of the studylimits findings to this sample. However, it can providedirection for further study. Qualitative research reliesupon people's willingness to reveal in-depth account oftheir experiences.8CHAPTER TWO:REVIEW OF THE LITERATUREIntroductionThe purpose of this chapter is to provide a review ofthe literature related to health care professionals'perspectives of patient behaviors with a primary focus onbehaviors which they perceive to be noncompliant. Pertinentresearch and theoretical perspectives regardingprofessionals' attempts to explain and describe patientbehaviors in managing illness will be explored.Furthermore, the review of the literature will examinehealth professionals' emotional and behavioral responses tobehaviors of chronically ill patients.The literature review is organized into four sections:first, the terminology used by professionals to describepatient behavior in the context of participation andmanagement of illness; second, theories and models developedto explain patient health-related behaviors; third, factorsperceived to influence patient behaviors; and fourth,attitudes of professionals towards chronically andterminally ill patients.Terminology to Describe Patient BehaviorThe terminology used to describe patient health-relatedbehavior was varied and inconsistent throughout theliterature. Three recurrent terms were found in theliterature: compliance, adherence, and alliance.Compliance, a term for which researchers have not reached9consensus, was generally described in reference tomeasurable patient outcomes (Betts & Croty, 1988). It wasalso a term that was commonly used by health professionalsin reference to a clinical problem with patients.Many authors have attempted to describe theirinterpretation of the term compliance. Compliance has beendescribed as coercion on the part of the health professional(Barofsky, 1978) requiring patient obedience (Meichenbaum &Turk, 1987) and one-way communication (Quigley & Giovinco,1988) while assuming that the patient is unable to maketheir decisions (DiMatteo & Friedman, 1982). Contrary tothis interpretation of the term, for other authors,compliance implied a conscious decision on the part of thepatient who "chooses behaviors that coincide with a clinicalprescription" which is negotiated and mutually agreeable tothe patient and health professionals (Dracup & Meleis,1982).The term adherence implied the conforming of patientsto medical recommendations which had been determined forthem (Barofsky, 1978).^Alliance pertained to patientsactively negotiating with health professionals in thetreatment decision-making process (Barofsky, 1978; Quigley &Giovinco, 1988). This definition was found to be in keepingwith the trend in health care where patients expect to beactive participants in the decision-making process(Meichenbaum & Turk, 1987).10In general, noncompliance was described in terms offrequency, duration, and degrees of compliance with amedical regime. Deviation from the recommended treatmentwas considered to be noncooperation or noncomplianceattributed to a patient's lack of understanding orunwillingness to make necessary life-style changes (DiMatteo& Friedman, 1982). However, for some authors, noncompliancewas not always a reflection of a patient's lack ofunderstanding or willingness to change.The concept of noncompliance was frequently examined inthe nursing literature. In their description ofnoncompliance, Dracup and Meleis (1982) included behaviorsthat vary from the regime to which the patient and the nursemust have mutually agreed. Furthermore, Dracup and Meleis(1982) categorized noncompliant patient behaviors into twogroups: acts of omission and behaviors of commission.Assumptions about the patients were implicit in each ofthese categories. In the first group, it was assumed thatpatient behaviors are unintentional, that patients simplyforget to follow the recommendations or advice of healthprofessionals. The assumption underlying the secondcategory of patient behaviors, acts of commission, was thatpatients consciously choose not to follow theserecommendations or advice. In presenting the findings of arecent nursing research study, Thorne (1990) also describednoncompliant behaviors as "conscious and reasoned decision11not to adhere to professional advice" (p. 63). Thorne's(1990) definition offered a more positive view of the termnoncompliance. The contradicting findings of what isimplied in labelling patients noncompliant support the needfor further research to gain a greater understanding of thisphenomenon.A review of the nursing literature indicated that therewas disagreement as to the appropriateness of the termscompliance and noncompliance as nursing diagnoses. Edel(1985) claimed that although the terms compliance andnoncompliance were frequently used among nurses, they werenonetheless controversial. The controversy centered aroundwhat was implied about nurses' relationships with patientswhen nurses label patients as compliant or noncompliant(Edel, 1985). According to Edel (1985), the term complianceimplied that the one person had the power to control anddominate others. Edel (1985) perceived this approach topatients was not favorable to developing a "helpingtherapeutic alliance that focuses on the patient's autonomyand individuality" (p. 84). One can conclude from Edel's(1985) view of the term compliance that she perceived it tobe undesirable. According to Edel (1985), the role of thenurse who holds a therapeutic alliance is to "explore andsearch with the patient for the reasons behind the behaviorand in so doing aid the patient in refocusing voluntaryhealthful activities" (p. 85). Furthermore, Edel (1985)12disagreed with the concept of noncompliance as a nursingdiagnosis because it did indicate the problem towards whichthe nurse should direct her attention.Vincent (1985) cautioned that the abundance of studiesof patient compliance might inadvertently mislead 'anuninformed observer' to think that it is the goal whichhealth professionals want to achieve. Vincent (1985), whilenot objecting to noncompliance as a nursing diagnosis,raised concerns about compliance as a goal of nursing.According to Vincent (1985), this was clearly not nurses'goal. Rather, "our goal is optimizing the health status ofour clients" (Vincent, 1985, p. 266). This philosophyprovided direction for nurses to assess the patients' healthstatus whenever patients indicated they had not beenfollowing the prescribed medical regime. In the absence ofill effects, the nurse was directed to reevaluate and adaptthe regime. However, in the presence of harmful effects,the nurse was then directed to identify the reasons forwhich the patient did not follow the regime and assistpatients to follow it if she perceived that doing so wouldbenefit the patient. In the latter scenario, Vincent (1985)perceived that "one of the identified problems would benoncompliance" (p. 266) which would prompt nurses to seekadditional information before selecting the most appropriateintervention.13Conceptual ModelsSeveral research studies have attempted to explainpatient behavior during acute or chronic illness from theperspectives of health care providers. Kirscht (1974) hasreviewed a number of conceptual models which attempt toexplain or account for health or illness related patientbehaviors. Kirscht (1974) compared and contrasted betweenseveral conceptual models (Kash & Cobb, 1966; Kosa &Robertson, 1969; Suchman, 1966; Mechanic, 1968; Fabrega,1973; Andersen, 1968; Andersen & Bartkus, 1973) and theRosenstock's Health Belief Model in terms of "psychosocialcomponents" (p. 387) that are thought to influence both themeaning which patients assign to symptoms and theirdecisions about how to manage their illness. Kirscht's(1974) review of these models revealed that sickness andillness behaviors are not always distinguishable.Furthermore, definition of illness behaviors have expandedto include the process of individuals discovering what iswrong, self treatment, seeking and using health services.According to Kirscht (1974), the key factors thatdifferentiate the models cited above were the determinantsor influential factors used to explain behavior and therange of actions taken to respond to symptoms of illness.The development of the Health Belief Model (HBM) wasoriginally intended to explain and predict illnessprevention behaviors. These behaviors result from14motivation based on individual perceptions of the expectancyof goal attainment (Rosenstock, 1974; Maiman & Becker, 1974;Kasl, 1974).^The HBM was later refined to includesick-role behaviors in acute and chronic illness (Janz &Becker, 1984; Kasl, 1974), and outpatient or ambulatory care(Janz & Becker, 1984). The essence of the HBM is thathealth related decision-making is based on the patient'scost-benefit analysis of psychosocial, economic (Rosenstock,1974; Janz & Becker, 1984), physical, and administrativefactors (Suchman, 1976). The outcome of this cost-benefitanalysis was seen to determine patient behaviors in sicknessand in health. In a recent review of studies based on theHBM, Rosenstock (1990) concluded that "summary findingsprovide substantial empirical support for the HBM.."(p. 47)as a tool for predicting patient health-related behavior.Despite these findings, conflict often arises when patientbehaviors do not meet health professionals' expectationsthat patients will follow a recommended medical regimen.Dracup and Meleis (1982) proposed a critique of severaltheories, models, and research studies developed to explainand analyze patient behaviors, specifically compliance to amedical regime. According to Dracup and Meleis (1982), themedical model "assumes that the cause of noncompliance canbe traced to characteristics of the patient alone, not tocharacteristics of the health care provider" (p.32). Suchan assumption negates the significance of the nurse-patient15relationship and on patients' illness management behaviorsrelated to a prescribed regimen (Dracup^Meleis, 1982).Control theory and social learning theory also focused onpatient characteristics to explain and predict thelikelihood of patient compliance. According to Dracup andMeleis (1982), the premise of these theories in analyzingcompliance and noncompliance is that patients' behavior isrelated to their expectation that their behavior will resultin a particular consequence. The Health Belief Model"includes many of the personality and socioenvironmentalvariables not considered in the medical model" (Dracup &Meleis, 1982). Dracup and Meleis (1982) proposed the use ofan interactionist approach to study patient compliance andadjustment to changing roles through interactions withothers.Factors Influencing Patient BehaviorA review of the literature revealed an abundance ofresearch within various disciplines describing determinantsof patient behaviors or exploring factors predictive ofpatient behaviors in carrying out prescribed medicalregimes. However, there were conflicting conclusions aboutwhich factors influence patients to follow a recommendedmedical regime. Furthermore, there was also a discrepancyas to the extent of influence these predictive factors haveon patient behaviors.Several nursing research studies have identified social16support (O'Brien, 1980a; McMahon, Miller, Wikoff, Garrett, &Ringel, 1986), demographics, and sociopsychologicalvariables (Marston, 1970) as determinants of health-relatedpatient behavior. O'Brien (1980b) stated "that family andfriends' expectations are strongly associated with patientbehavior; direct association between the expectations ofdialysis care-givers and social functioning was notevidenced" (p. 368). The findings of this study, whichconsisted of 126 hemodialysis patients, suggested thatnurses are not perceived by hemodialysis patients as havinga significant influence on patient behavior and adaptationto end-stage renal failure. However, another nursingresearch study (Jackie, 1974) of hemodialysis patientsatisfaction revealed contradicting findings which suggestthat nurses can influence patients to adopt appropriateself-care behaviors in the management of end stage renalfailure.Davis (1968) conducted an exploratory study in which hespecifically investigated "the ways in which dimensions ofdoctor-patient interaction relate to patient compliance" (p.276) based on initial visits and revisits to a generalmedicine clinic. This study was a continuation of a largerstudy "of major social, psychological, and physical factorsthat account for variations in patients' compliance withdoctors orders. The data were collected by means ofaudiotaped interviews, questionnaires, and content analysis17whereby data were coded into a category depicting the natureof the patient-physician interactions. Subsequently, thecategorized data were further analyzed using factoranalysis, a statistical procedure. The findings of thisstudy indicated that patients who had revisited physicianswere less likely to comply if physicians were "permissive"in response to authoratative patients; if physicians did notprovide feedback to patients who rely on the information todetermine what the problem is and how to solve it; if bothpatients and physicians were antagonistic towards eachother; if physicians withheld information and limited theirinteractions to conveying opinions or feelings about thepatients' situations; and if physicians provided informationwithout giving patients a diagnosis. Davis (1968) concludedfrom the statistical analysis of the data (p value ofgreater than .05) that "there is little association betweenwhat occurs in the primary visit and later compliance" (p.278). The most significant factor related to patientcompliance was when patients and physicians were able torelease tension by "joking, laughing, and showing somesatisfaction with the relationship" (p. 278). However, thefindings of this study also suggested that a friendlyrelationship is not significantly correlated with patientcompliance. The author expressed suspicion that a friendlyrapport between physicians and patients may lead topatients' undermining the physicians whereby patients choose18to ignore the physicians' advise: "It may be easier then fora patient to ignore the advice of a friendly physician thanone who is formal and authoritative" (p. 278).Bille (1977) conducted a study of 24 patients with aclinical diagnosis of acute or probable myocardialinfarctions to investigate the relationship between bodyimage, the acquisition of knowledge about life after a heartattack, and the incidence of patient compliance with themedical regime as perceived by the patients. One premise inthe study was that patients learn about their disease orillness as a means to reduce stress brought on by thedisease. The study was also based on another premise: that"without readiness to learn, however, any learningexperience will most likely be ineffective or learning willnot occur" (p. 143). The findings of this study indicated asignificant relationship between the satisfaction with one's"body parts and function" and "sense of self-image", termsthe author used to reflect body image, and the level ofpatient compliance in following the prescribed medicalregime. Bille (1977) conjectured that "these same patientsmay place a higher value on caring for their bodies" (p.147). The results of the study also indicated that therewas not a significant correlation between the acquisition ofknowledge about the disease and its' treatment and the levelof patient compliance to the treatment regime.Several nursing authors have proposed strategies for19improving patient compliance to medical regimens (Carey,1984; Bennett, 1986; Hill, 1986). In a nursing study of 115hypertensive subjects who were assigned a medicationregimen, Kerr (1986) investigated "the relationship betweenintervention strategies and the effect that personalitycharacteristics have on adherence behavior" (p. 87). Thefindings of this study revealed that personalitycharacteristics known as health locus of control may beuseful in predicting health behaviors (Kerr, 1986). Thesefindings concur with a prospective descriptive medicalresearch study (Kaplan De-Nour & Czaczkes, 1972) of 43hemodialysis patients and the effects of personality factorson noncompliance with a component of the medical regimen,the renal diet. Patient compliance was measured every threemonths by means of physical assessments and biochemical dataof these. patients using a five point scale. Kaplan De-Nourand Czaczkes (1972) concluded that many variables, combinedor alone influence patient compliance. These variablesranged from patients' beliefs about end stage renal failureand/or its treatment and their emotions such as hostility,depression, frustration, or denial of their illness.Health Professionals' AttitudesResearchers have extensively studied the needs,behaviors, and expectations of patients in relation tohealth, illness, and disease; however, most of these studieshave been conducted from the health professional's20perspective rather than that of the patient. A review ofthe literature written within the last twenty years alsorevealed a significant amount of research has focused onnurses', student nurses', and other health professionals'attitudes toward chronically or terminally ill patients suchas the chronic mentally ill (Smets, 1982), patients in long-term care facilities (van Wiltenburg & Maccagno, 1986),patients with AIDS (Kerr & Horrocks, 1990), oncologypatients (Martin & Belcher, 1986; Whelan, 1984), and theelderly (Glasspoole & Aman, 1990; McCann, 1988). Each ofthese authors identified the need for more research onhealth-care providers' responses to patients with chronic orterminal illnesses.While Kelly and May (1982) reviewed several studies onlabelling patients "good" and "bad", they also reviewedstudies on the attitudes of nurses and physicians towardspatients in terms of patient attractiveness. However, Kellyand May (1982) concluded that the findings from the studiesthey reviewed were inconclusive. Therefore, the process bywhich health professionals label patients as good or badrequires further investigation.The investigator has identified one recent qualitativeresearch study which described emotional reactions andbehaviors of acute care staff nurses towards hemodialysisin-patients, including those whose behavior was perceived tobe noncompliant (Wolfsen, 1989). The findings of this study21revealed that acute care nurses generally perceived thesepatients as difficult. All nurses in the sample expressednegative feelings about caring for such patients anddescribed their care requirements as "demanding,frustrating, depressing, and generally unrewarding"(Wolfsen, 1989, p. 330). However, two nurses expressedpositive feelings and found the care challenging. Theinvestigator questioned why there are such "widely disparateperceptions" (Wolfsen, 1989, p. 336) and recommended furtherstudy.Only one medical research study (Kaplan De-Nour &Czaczkes, 1968) was found which examined emotional reactionsand behaviors of a multidisciplinary hemodialysis teamtoward their patients. Emotional reactions and behaviorsfrom the team members consisted of "feelings of guilt,possessiveness, over-protectiveness, and withdrawal frompatients" (Kaplan De-Nour & Czaczkes, 1968, p. 987). Theirreactions and behaviors appeared to be related to theirperceptions of the efficacy of hemodialysis during that eraand realizing that not all patients would improve as aresult of the treatments. Another influential factor intheir responses was the team's denial of the severity ofpatients' illness.The investigator was unable to identify a researchstudy which specifically described hemodialysis nurses'perceptions of noncompliant patient behaviors and/or their22responses to perceived noncompliant patient behaviors ofhemodialysis patients. Nurses caring for in-hospitalmaintenance hemodialysis patients have been specificallyselected for this study in light of the long-termnurse-patient relationship and the complex medical regimenwhich these patients are expected to follow.SummaryThe terminology used to described health relatedbehavior was varied and inconsistently used in theliterature. There appeared to be some disagreement amongauthors as to the meaning assigned to the terms complianceand noncompliance as these relate to labelling patients andthe implications of using such terms as nursing diagnoses.Researchers have extensively studied determinants and modelsof patient illness and health related behaviors yet theirwas also disparity in these findings. The review of theliterature related to health professionals' attitudestowards chronically and terminally ill patients revealed aneed for more research on health care providers' responsesto such patients. The process by which health professionalslabel patients was also said to require furtherinvestigation. Finally, the paucity of studies in theliterature reviewed supported the need to specificallyinvestigate hemodialysis nurses' perceptions of, andresponses to, in-hospital maintenance hemodialysis patientswhose behavior nurses perceive to be noncompliant.23CHAPTER THREE: METHODSIntroductionThe nature of the research question indicated to theinvestigator that the phenomenon of concern would best beexamined using qualitative research methods, specificallyphenomenology. According to Benoliel (1984), "qualitativeapproaches in science can be viewed as modes of systematicinquiry concerned with understanding human beings and thenature of their transactions with themselves and with theirsurroundings" (p. 3).The aim of Colaizzi's (1978) phenomenological method isto describe and understand psychological phenomena.Colaizzi's (1978) phenomenological approach was used toexamine the experience of providing care to hemodialysispatients who are seen by hemodialysis nurses as noncompliantand to specifically explore the following two questions:1) How do hemodialysis nurses perceive and describenoncompliance for patients receiving in-hospital maintenancehemodialysis?, and2) How do these nurses perceive the identified noncompliantpatient behaviors affect the nurses' behavior when providingcare for such patients?According to Field and Morse (1985), the goal ofphenomenology is "to describe accurately the experience ofphenomenon under study and not to generate theories ormodels nor to develop general explanation" (p. 28). Further24to this, Power and Knapp (1990) state "the goal ofphenomenological writing is to heighten critical awarenessand deepen reflective thoughtfulness about what is importantin the taken-for-granted and seemingly trivial aspects ofeveryday life" (p. 106). Munhall and Oiler (1986) advocatethe use of phenomenology where researchers seek to "describeexperience as it is lived by people" (p. 70). Morespecifically, a phenomenological approach is an appropriatemethod of inquiry when researchers seek to "describe thetotal systemic structure of lived experience, including themeanings that these experiences had for the individuals whoparticipate in them" (Ornery, 1983, p. 50). Therefore, aphenomenological approach was the most appropriate researchmethod to explore and describe the meaning of the experienceof hemodialysis nurses providing care to in-hospitalmaintenance hemodialysis patients whose behavior theyperceive to be noncompliant. Furthermore, aphenomenological method also allowed the investigator toexplore and describe hemodialysis nurses' perception of thatmeaning's affect on their interactions with these patients.Selection of the Study GroupSample Selection The investigator selected participants by means of atheoretical sampling technique, that is, the investigatorchose participants who could discuss the experience ofproviding nursing care to dialysis patients whose behavior25they perceived to be noncompliant. The investigator invitedhemodialysis nurses who were interested in speaking to thisphenomenon to participate in the study. The sample for thisstudy initially consisted of eight participants. Twoparticipants were required to withdraw from the study afterthe first interview due to unforseen circumstances unrelatedto the study. Nevertheless, the investigator included theirdescriptions of their experience as relevant data for thisstudy. Further participants were not sought as no newthemes emerged during concurrent data analysis andvalidation of themes with the remaining participants.Criteria for Participation According to Colaizzi (1978), "experience with theinvestigated topic and articulateness suffice as criteriafor selecting subjects" (p. 58). In addition to selectingparticipants who met these general criteria, theinvestigator also chose participants according to morespecific criteria. The following criteria would serve toincrease the likelihood of capturing the essence of thelived experience of hemodialysis nurses from the selecteddialysis units:(1) Participants were Registered Nurses, employed fora minimum of six months as hemodialysis nurses, in adialysis unit of a participating acute care agency withinthe city of Vancouver with a multi-cultural patientpopulation.26(2) Participants spoke fluent English.(3) Participants were interested in discussing theissue as described by the investigator.(4) Participants agreed to be interviewed two to threetimes for one to one and a half hours each time, at amutually- agreed-upon location.(5) All participants were unknown to the researcher.Procedure for Participant Selection The investigator approached Directors of NursingResearch (see Appendix A) and Head Nurses of thehemodialysis units (See Appendix B) of two hospitals inVancouver for permission to interview Registered Nurses forthis study. Initial recruitment of participants began byasking the Head Nurse of each unit to speak to the nursingstaff about the study and the criteria for participation.The head nurses also distributed a letter of information forparticipants to the nurses on the hemodialysis units (SeeAppendix C). The letter of information urged interestednurses who met the criteria to identify themselves to thehead nurse or investigator to set up a preliminaryappointment to discuss their questions or possible concernsabout the study. Only one nurse came forward as a possibleparticipant. Consequently, in a second attempt to recruitparticipants, the investigator approached several nursesindividually on their respective units to invite them toparticipate in the study. The investigator also sought27assistance from the head nurse on one of the hemodialysisunits who recommended the names of several nurses who metthe inclusion criteria for the study.As a result of this recruitment process, four nursesfrom each hemodialysis unit agreed to be participants in thestudy. It is interesting that the nurses who turned downthe personal invitation to participate in the studyperceived that they didn't have anything "important" to saydespite their extensive experience in hemodialysis.Ethical ConsiderationsThe research proposal was reviewed and approved by theUniversity of British Columbia's Behavioral SciencesScreening Committee prior to conducting this study. Therole of the investigator during the data collection processwas discussed with the participants prior to the researchstudy. At that time, the investigator also notifiedparticipants that they were free to choose not toparticipate or to withdraw at any time without incurring anyrisk to their position within the agency. Participants wereassured before data collection began that their descriptionswould remain confidential. Therefore, all data were codedto protect the participants' identities. While directquotes were taken from the transcribed interviews, thesequotes are presented in such a way that others could notidentify the participants.The investigator explained to the participants that the28transcripts would be read by the investigator, her academicthesis advisors and the transcriber. The transcriber andthesis advisors would not be able to identify theparticipants by name as identifying characteristics would bedeleted from the transcripts and the data would be coded.Prior to taking part in this study, participants signeda consent form (Appendix D). The investigator indicated tothe participants that the findings of this study would be apart of a Master's thesis and might be published and/orpresented at nursing conferences upon completion. Theinvestigator assured participants that their responses wouldalso be presented in a nonidentifying way at the time ofpublication or presentation of the research findings.Data Collection ProcedureThe Registered Nurses selected for this study werethe primary source of data collection. The investigator wasthe only person to collect data from the study sample. Datacollection was accomplished through semi-structured open-ended interviews. All of the interviews were audio-taped.The sites selected for the interviews were mutuallyagreed to by the participants and the investigator. Theonly stipulation was that the chosen location provide anenvironment that would be free of interruptions ordistractions. The investigator perceived that such anenvironment would enhance the participant's concentration,to promote relaxation, to create a comfortable interview29setting enabling participants to express their intimatefeelings and perceptions about the research topic.^Most ofthe interviews were held on site at the hospital in a quietprivate room located away from the dialysis units. Fourinterviews were held in participants' homes.The investigator used trigger questions in the initialand second interviews to guide participants toward thephenomenon of interest yet allow freedom of expression(Appendix E). The investigator formulated and posed relatedquestions as participants' disclosures progressed during theinterviews and questions arose from the data analysis.Each participant was interviewed up to three times forperiods of one to one and a half hours. The purpose of theinterviews subsequent to the initial interview was tovalidate the investigator's interpretation of the previouslycollected data, to clarify any discrepant themes, and toseek further data. None of the participants requested tohave any segment of the interviews withdrawn from therecord. Therefore, all data relevant to the phenomenon ofinterest in the study were considered in the analysis.The investigator documented (bracketed) severalassumptions, beliefs, hypotheses, and preconceived ideasrelated to the phenomenon in field notes prior to commencingthe interviews. According to Oiler (1982), "bracketing doesnot eliminate perspective, it brings it into view" (p. 180).Therefore, all of the information which the investigator30documented throughout the interview process provided thecontext from which to view the participants' unique livedexperience. The investigator was cognizant not to discussthe bracketed information with the participants so as not toimpose her personal perspective on them. Rather, theinvestigator focused on the participants' experience ofproviding care to hemodialysis patients whose behavior theyperceived to be noncompliant.The investigator also recorded field notes after theinterviews to facilitate recall of the interviews. Theinvestigator documented the date, time, and location of theinterviews as well as any significant event or circumstancethat occurred in the work place or home setting that wouldhave potentially influenced the nurses responses to thetrigger questions. All of the interviews were transcribedverbatim from the audiotapes.Data AnalysisAccording to Colaizzi (1978), the research procedureand sequence of data analysis are flexible and can bemodified by the investigator in whatever ways seemappropriate. However, Colaizzi (1978) proposes a seven-stepsequential process for data analysis. The investigatorcollected and analyzed the data concurrently throughout theresearch process. In keeping with Colaizzi's (1978) seven-step process for data analysis, the investigator first readall of the participants' interview transcripts while31simultaneously listening to the tape-recorded interviews.Secondly, the investigator extracted significant statementsfrom each participant's description of their livedexperience of providing care to hemodialysis patients. Theinvestigator focused specifically on the significantstatements related to the participants' experiences ofproviding care to patients whom they perceived to benoncompliant. An example of a significant statementextracted from a participant's account refers specificallyto describing the perception of noncompliant patientbehaviors: "they eat and drink what they want", "they don'tshow up on time for dialysis".Third, the investigator attempted to find the meaningembedded within the identified significant statements. Thisprocess is referred to as "formulating meanings" (Colaizzi,1978, p. 59). For example, when the participants talkedabout noncompliance, there were discrepancies in the meaningthey assigned to such patient behavior. As a follow-up tothe first example, a participant indicated an intolerantperspective of such behavior because it creates a "problem"situation: "they have to conform to certain things likebeing on time . . . whenever possible for dialysis . . .because they can't show up at five minutes before we'regoing to close because it's not the way".The investigator was also able to identify repetitivethemes or formulated meanings among the participants'32descriptions of their lived experience. It was at thisstage of the analysis process that the investigatordiscovered similarities and differences in the meaning ofthe participants' lived experiences. The investigatorvalidated with each participant all of the significantstatements and formulated meanings related to the phenomenonof interest. During the validation process in the secondinterview, the investigator took the opportunity to talk toeach participant about other perspectives in the data.Subsequently, the investigator proceeded to the fourthstep of the analysis process. The investigator organizedsimilar or related formulated meanings into clusters ofemerging themes which were common to all participants. Onceagain, the investigator referred back to the originaldescriptions to validate these themes.The fifth step of the analysis process consisted ofintegrating the clusters of themes into a description of thephenomenon, nurses' perceptions of and responses tononcompliant behavior of hemodialysis patients. Theinvestigator formulated a succinct statement to capture theessential structure of the phenomenon as the sixth step ofthe analysis process.Finally, the investigator validated the resultingdescription by interviewing participants for a final time.This meeting provided an opportunity for participants toassess if the findings were consistent with their lived3 3experience and whether any critical area had been omitted.The findings in the analysis and discussion will be comparedand contrasted to existing theories and conceptualizationsof noncompliance such as those proposed in the literaturereview.SummaryThis chapter discussed the appropriateness of thephenomenological approach to study the following researchquestions:1) How do hemodialysis nurses perceive and describenoncompliance for patients receiving in-hospital maintenancehemodialysis?, and2) How do these nurses perceive the identified noncompliantpatient behaviors affect the nurses' behavior when providingcare for such patients?Sample selection was designed to chose participants whocould discuss the experience of providing nursing care todialysis patients whose behavior they perceived to benoncompliant. Ethical considerations reflected protectionof human subjects, especially the freedom to choose toparticipate or to withdraw at any time without incurring anyrisk to their position within the agency. Furthermoreconfidentiality was assured by coding the data to protectthe participants identities. Data collection occurredthrough audio-taped interviews which were transcribedverbatim. Open-ended trigger questions were used to guideparticipants to explore the phenomenon of interest. Dataanalysis was conducted using Colaizzi's (1978) method ofdata analysis. A presentation and discussion of the dataobtained using this process appears in Chapter Four.3435CHAPTER FOUR: PRESENTATIONS AND DISCUSSION OF ACCOUNTSIntroductionThis chapter will presents a description of thecharacteristics of the nurses who participated in the study.Such a description provides a context from which to view thenurses' experience of providing care to hemodialysispatients. While the initial purpose of this study was toexplore hemodialysis nurses' perceptions of and responses toin-hospital maintenance hemodialysis patients' whom theyperceive to be noncompliant, the investigator realized thatthis phenomenon had to be explored within the context of thenurses' experience of providing care. Therefore, ananalysis of the data will be presented which reflectsnurses' experiences of providing care to hemodialysispatients as a part of the description of their perceptionsof, and responses to, patients perceived as noncompliant.The first section of this chapter will begin with adescription of the nurses who participated in this study.The second section discusses the findings of this studywhich are presented under two major headings theinvestigator chose to reflect major themes which emerged:nurses' experiences of providing care and nurses' sense ofempowerment or powerlessness. The second section,therefore, will depict the nurses' experiences of providingcare to hemodialysis patients in terms of the nurses'perspectives of the patients' illness experience, the36dialysis regime, and the most effective approach to managepatients' illness. Within this section, the investigatorwill discuss how nurses take challenges into account whenassigning meaning to patients' illness management behaviors.In addition, nurses' descriptions of, and empathy for,patients' ways of coping with end stage renal failure willalso be presented. The investigator will discuss thenurses' beliefs about the requirements of the dialysisregime and the influence of these beliefs on whether or notnurses tolerate patient illness management behaviors thatare incongruent with the nurses' expectation. Finally, thesecond section of this chapter will also include the nurses'definitions of compliance and noncompliance, someparticipants' perceptions of noncompliance as aninappropriate term and the processes of labelling andjudging patients.The third and final section focuses on the nurses'sense of empowerment or powerlessness which is viewed as amodulating factor affecting the nurses' perspectives of thepatients' illness, its treatment, and the meaning which wasassigned to compliant or noncompliant patient behaviors.The investigator will discuss the nurses' sense ofempowerment and powerlessness. Subsequently, two majorsources of empowerment and powerlessness for the nurses inrelation to both nurse-patient relationships and work placeconditions will be discussed. Finally, the investigator37will discuss how nurses coped with powerlessness both intheir relationships with patients and in the workplace.Characteristics of the ParticipantsThe participants' years of experience in hemodialysisnursing ranged from 1.5 years to 25 years. Three of theparticipants had less than 7 years experience working inhemodialysis while each of the other five participants hadmore than 13 years experience in this field of nursing.One of the nurses who participated has worked inhemodialysis and nephrology research for most of her 20years in nursing. Three participants worked in otherchronic care settings such as extended care prior to comingto work in hemodialysis. Three of the participants workedin nephrology medicine prior to working in hemodialysisunit. One participant worked part time in the hemodialysisunit. Two of the participants worked part time in onedialysis unit and supplement their income by working parttime conducting clinical research or working in anotherdialysis unit also as staff nurses. Most of theparticipants' experiences in hemodialysis have been inCanada with the exception of one participant who also workedin hemodialysis in Great Britain.Although two of the participants were male nurses, theterms 'she', the 'nurse participants', or the 'participants'will be used in reference to the nurses who participated inthis study. Given the small sample size, referring to the38participants in this manner further ensures confidentiality.Nurses' Experience of Providing CareNurses' Perspectives of Patients' Illness Experiences During the interviews, the nurses gave theirperspectives of the dialysis patients' illness experience.Their accounts reflect not only their beliefs about theimpact of end stage renal failure and its treatment but alsotheir insight into the needs of these patients as theystruggle to manage their illness.Taking Challenges into Account In the process of assigning meaning to patient illnessmanagement behaviors, the nurse participants take intoaccount the difficulties and the challenges which individualpatients must confront. In the following excerpt, oneparticipant describes her perception of the extent to whichend stage renal failure changes the lives of patients andthe challenges the patients face in managing this illness:I think most of them . . . more or less, make anadjustment. I don't always think that it's a realpositive one because I think physically, you know,they're not real capable and lifestyles have to changeand they may never be happy with them. I mean I'veseen it happen to people who I think really had theworld by the tail and got sick, right at the time whenthey were going to retire, all of a sudden, all theirplans, and I'm not saying they don't adjust, they have39to accept, the alternative is not great so they do itbut I don't know if they ever. . . . I mean I thinkmost people, um, have plans and hope for things. . . .This kind of illness changes everything, changeseverything.Describing Patient Coping with End Stage Renal Failure The participants use the word coping to describe howpatients manage their illnesses and lives on dialysis. Inaddition, participants describe patient coping with suchterms as "making a positive adjustment"; "dealing withthings"; "trying hard"; and "accepting" or "not accepting".Patients who follow the regime are generally perceived asmaking a "positive" or "easy" adjustment while those who donot follow the regime are perceived as "having troubleadjusting".The following account captures the participants' sharedbelief that a patient's ability to cope is based on his orher experiences in life:I mean there are so many variables and so many thingsthat make, that play a big part in what makes a personable to cope with, with being on dialysis. . . . andthat's perhaps why . . . everybody does copedifferently and I guess it's whatever has led them intheir life to that point in their life and it becomestheir wealth of experience that let's them deal with itone way or another you know.40Imagining What It Must Be Like Participants frequently shared their perspectives ofwhat it would be like to experience life on dialysis. Thenurses who participated in this study use phrases such as"If it were me", "If I was on dialysis", and "putting myselfin that position" when trying to imagine themselves in thedialysis patients' situation.Participants in the study perceive that they couldidentify with how patients feel and/or how they would feelif they themselves were dialysis dependent. The followingexcerpt captures both of these perceptions:Especially if I'm ready to snap at somebody. . . butthen I just stop and think: No well, I'm not the onewho's lying there getting needles shoved into my arm,and that always holds me back, just putting myself intheir position it's just another thing they don't need.I feel that we have a lot of power over these people. .. .just the way sometimes that the nurses treat some ofthe patients, it's almost like it's a power thing withthem, you know, refusing to do something little forthem or making them wait to be taken off when they'rebuzzing. . . . that's something I think it's justunacceptable, completely unacceptable. I don't likethe idea that I have power over people. . . . they mustfeel like helpless sometimes under us. . . . if I wasin their position I think I would feel helpless.41Participants also shared the perception that patientsare not different from themselves or people in the generalpopulation.^The following excerpt illustrates howparticipants empathized with their patients and in so doing,reflected upon the experiences of these patients:I mean if it were me . . . people would wrongfullyexpect me to get over this. . . be happy with life. Imean I could live my life and adjust and sure stillenjoy what was left, but would I ever get over it, youknow the fact that I wasn't able to do what I hadplanned for my life? . . . I think a lot of them thinklike me. I mean,^I don't see myself as being toomuch different. I think we're . . . all basically thesame animal.Several participants related their experience of havingdifficulty with staying committed to a dietary regime andperceive that patients probably experience the samedifficulty in their efforts to manage their illness. Othersuse such terms as "awful" and "hard" when describing theirperception of the patient experience of having to follow thefluid and dietary restrictions of the dialysis regime. Oneof the participants describes her experience of living witha chronic illness and how this experience has providedadditional insight into dialysis patients' daily burden.Another participant describes how she compares the conceptof her body's homeostasis with the patients' fluctuating42physiological state. The following account captures herperception of how she perceives she would feel and herperception of how patients must feel:My body is always the same: my chemistry is more orless the same, by blood pressure, my pulse, myhaemoglobin. And a lot of these patients they come inwith a blood pressure of two hundred and go out with ablood pressure of one hundred. . . . Come in with apotassium of six and walk out with a 2.1 or something.How are you going to feel? . . . It would make me feelvery, I think a little nervous about the whole thing. .. . they must think about it all the time. . . . theyknow if their potassium is too high, they can just die.. . . I think it would be nerve wracking.The nurse participant draws upon personal experiences andprofessional knowledge to gain an understanding of what lifemust be like for end stage renal patients. Such reflectionsin turn feed into how nurses both develop and convey theirexpectations of patients.One participant explicitly claims to be empathetic withdialysis patients:I can empathize with a lot of them 'cause I, I sort ofsee myself in that situation and . . . I can't say nonow, you know, have another drink X. Sure, okay. Ittakes a lot of willpower to change like that, to say noI can't.43According to Travelbee (1963), empathy is a consciousprocess where " the thoughts and feelings of the otherperson are accurately perceived" (p. 137). Theseperceptions increase one's ability to comprehend or predictthe behaviors of those with whom one empathizes. However,to be empathetic, an individual must have the ability to putthemselves in the same or relatively similar situation tothat of another. The participants' accounts of imaginingwhat it must be like to live with end stage renal failureand the constraints of the dialysis regime indicate thatthey were able to relate to the patients' situations and inso doing, can be seen to be empathetic.Nurses' Perspectives of the Dialysis Regime Most of the nurses who participated in this studyperceive themselves as understanding the impact of theillness on the patient and being able to empathize with thedifficulties of managing a chronic illness. Nevertheless,the participants perceive the standard dialysis regime to bethe most effective approach to manage end stage renalfailure and expect patients to follow the regime as long thepatients are able to "make the most out of life".Beliefs About the Regime Nurses' beliefs about the regime invariably influencetheir tolerance for patient behaviors which they perceive asbeing incongruent with their expectations. Theparticipants' expectations of patients in the management of44their illness are influenced by their beliefs and valuesabout the importance of patients following the dialysisregime. There is a general consensus among the participantsregarding the components of the dialysis regime which theyperceive patients should follow: fluid restrictions, dietaryrestrictions, taking medication, showing up on time fordialysis, and participating in the dialysis procedure.Although they perceive that each aspect was essential, theparticipants differ in their perceptions of the relativeimportance of the regime components. These differences inperceptions are seen to reflect the participants' individualbeliefs and values about the dialysis regime. Regardless ofwhich aspect the participants consider most important, theygenerally do not expect patients to strictly follow theregime. The expectations which the participants hold aregrounded in their beliefs that some patient behaviorsendanger the patient's life, and inconvenience, or endangerthe lives of other patients.Drawing the Line Most of the nurses who participated in the study talkedabout how they "draw the line" or have firm criteria fortolerating patient behavior that is incongruent with theirexpectations. When patient behaviors exceed the limits ofthese criteria, the participants tend to reinforce theinformation which they have already provided to patients.One participant describes her intolerance of patients45whose elevated serum potassium levels indicate that theyhave not followed the potassium restrictions of the renaldiet. The participant's intolerance of this patientbehavior is based on her knowledge of the dynamics ofhyperkalemia and its life-threatening potential.Consequently, the participant believes that patients shouldfollow the potassium restriction closely.The only thing that I will really press them on ispotassium. If they're hyperkalemic then I will really,something that I think will take their life. . • •That's about the only thing that I would consider lifethreatening.One of the participants questions the validity of theinformation given to patients about dietary restrictionsbecause the guidelines she once used to advise patients inthe past no longer apply in present patient teaching. Inaddition, this participant believes that patients should nothave to restrict their dietary intake because dialysis ismuch more effective than it was in the past. Furthermore,this participant perceives that the patient may notnecessarily be at fault if his or her serum potassium iselevated. The following account captures this participant'sbeliefs about the effectiveness of the dialysis, thepatients' need to follow the dietary regime, and how lack ofregular monitoring may lead to high serum potassium levels:46. . . . It was really hard to be a dialysis patient along time ago because we didn't have very gooddialysis. So they would easily run into highpotassiums and had to be very, very careful . . . thepotatoes had to be soaked and all that nonsense. Butyou don't do that anymore . . . those filters aregreat. I think patients can eat more or less what theywant. You don't see high potassiums anymore. . . . Nowand then you get one of seven, but you don't have to bealarmed if the patient is OK. . . . So often we neglectto, we only do monthly blood work once, especially withnew patients. . . . It's not the patient's fault, it'sour fault. So often we do things wrong.Nevertheless, this participant claims that she usuallylikes to start out by giving patients "the rules" aboutdietary intake, potassium control, and fluid restrictionsbut tells patients that these restrictions will eventuallybe modified according to their individual needs. Guidelinesthen, are individual and can be traced to nurses'understanding of the illness, it's treatment, and theirexpectations of how to manage it. Thus, nurses appraisepatient illness management behaviors against this framework.Making Exceptions The participants make exceptions in their expectationsof patient behaviors in following the dialysis regime aslong as the patient is not harmed in the course of these47behaviors and that they can effectively dialyse the patient.One participant believes that if patients can toleratehaving excess fluid removed during dialysis then they shouldnot be expected to have to constantly follow the fluidrestriction so closely.I don't think it really matters that much if they gainfive kilos between dialysis if you can take it off. . .and the patient seems quite comfortable: he's not shortof breath, blood pressure is alright. . . . I thinkit's an individual thing.Managing Patients' Illness Most Effectively One of the major goals of providing nursing care tohemodialysis patients is to manage their illness mosteffectively. The participants' perceptions of the mosteffective approach to managing the patient's illness rangefrom allowing patients to do very little of what they havebeen asked to do, to expecting patients to do everythingthat is asked. Regardless of which approach patients chooseto abide by, the nurse participants perceive that the mosteffective approach is that which allows dialysis patients to'have a life' with a minimal risk of harm.An overriding theme in the participants' accounts isthe nurses' perceptions of how congruent the patientbehaviors are with the nurses' expectations as to the mosteffective approach to manage the patient's illness. Theparticipants view patient behaviors as either congruent or48incongruent with their expectations.Defining Compliance Patients whom the participants perceived as havingbehaviors congruent with their expectations are calledcompliant. However, participants vary in their expectationsof what they perceive as compliant behavior. Oneparticipant describes her perception of patient complianceas taking responsibility for oneself by following thedialysis regime:P: Looking at how they've done between treatments, ifthey're being compliant or how well they're managingtheir weight gains.I: Is that what compliance is to you?P: Following the regime, the daily regime, um,compliance. You find how much fluid they gained, howwell they control their diet, um, taking their pills,their medication when they're supposed to, showing upfor treatments, just taking responsibility forthemselves.Defining Noncompliance Patients whom the participants perceive their behavioras incongruent with their expectations are labellednoncompliant. The following excerpt illustrates aparticipant's perception of noncompliance:Sometimes what you're really saying is you're notfulfilling my expectations of you as a patient, on one49level or another, that probably comes through. . .again that's probably fairly unconscious.Another participant's account describes patientbehaviors as noncompliant again because they are not inkeeping with the participant's expectations of how adialysis patient should manage his illness:You often have problems with them not complying inthe fact that, you know, they think they can eat anddrink what they want, they don't show up on time fordialysis . . . all the things that we see, and youthink as noncompliant.In describing her experience of providing care tohemodialysis patients, one participant perceives that it ispart of her role to convince patients to value and adopt thedialysis regime as the most effective approach to managetheir illness:With the noncompliant patient, you feel like you mighthave a little bit of control over this, to be able tohelp this person and maybe you'll be able to um, sortof be compliant . . . . The only way to havecontrol over the noncompliance is to state when theyare noncompliant and the repercussions that may followbecause they've done something that's detrimental totheir health, that's the only control that you have.What also emerges is a sense of a need to maintain controlof the patient's behavior so as to protect the patient from50potential harm.Noncompliance: An Inappropriate Term One participant perceives noncompliance to be aninappropriate term to label patients. This participantdescribes a situation where the medical team had convinced apatient who was trained in self care dialysis to go to alimited care dialysis facility. The participant's accountillustrates her disapproval of the team who called thepatient noncompliant:I think we're . . . a bunch of dictators . . . wecall the ones that don't do exactly what we want them[to], noncompliant . . . and that bothers me a lot. Ican remember a case, uh, a young fellow that we wantedto train to go to limited care, you know. He workedfull time, hard working guy. I liked him a lot. Imean I thought, you know, he was giving it his best, hewas working, and coming to dialysis, did go through theself care training and we promised them all kinds ofthings when they go down there, um, and with . . . thebed situation, they had lost all the flexibility so hewas sort of nailed into this time slot. . . . we'reasking him to spend at least forty five minutes moredoing his dialysis, revolving his life around it thanhe would in the central unit. How fair is that? Hewas always fighting and arguing with them because theyjust would not bend, you know, they wouldn't let him51change his time here. .^•^•him and then we say that .just can't reason with him.We just make it hard for. . he's noncomplying: you. . . You see he verbalizedit so he got called a noncompliant so and so. .Probably half the patients down there would say exactlythe same thing. They all went through the same sort offeeling, they just didn't verbalize it. But boy, he'slabelled a lousy shit for opening his mouth, you knowand arguing with them. My God, he had the gall toargue with us who know best and I thought we're justnot fair.The nurse perceives an injustice for this patient becausethe team enticed him to agree to doing something on thepretence that it would be beneficial to him when in factwhat the team proposed created more limitations for him. Ina situation such as this, the nurse speaking above can beseen as experiencing tensions in her role. She sees herselfas being expected to present treatment options to thispatient so as to persuade him to choose the option which theteam perceives as most appropriate. But in this situation,the nurse thinks the treatment option did not live up to theexpectations set out by the professionals. In thisinstance, the relationship between the nurse and the patientchanged and the patient retaliated with anger. Theparticipant has observed that typically, the dialysis staffdisapproves of such angry behavior and that patients such as52this are often labelled as noncompliant.Processes of Judging and Labelling Patient Behaviors During the interviews, the participants not onlydescribed patient behaviors as compliant or noncompliant butalso assigned meaning to these behaviors by judging andlabelling patient behaviors. Participants labelled patientsas being "good" or "bad", "easy", "perfect" or "difficult".Although participants have relatively similar criteria foreach of these patient labels, participants do not alwaysagree on the meaning of patient behaviors. Thus there areinstances when participants attribute opposing meaning tosimilar patient behaviors. In addition, participantsdescribe how various patient behaviors to which they haveassigned meaning often create difficult situations in theirnursing practice. However, there are significantdiscrepancies in the participants' perceptions of whichpatient behaviors create problems in working effectivelywith these patients.Participants cope with incongruent patient behaviors byputting these patient behaviors into perspective andadjusting their expectations of patients. The participantsdescribe their perceptions of, and responses to, patientbehaviors as processes that evolve over time as do theparticipants' expectations of patient behaviors in themanagement of their illness. The meaning which participantsassign to patient behaviors relate to their familiarity with53the patient as well as the patients' familiarity with thedialysis regime. The findings of this study are consistentwith that of Benner and Wrubel (1989) who conducted aphenomenological study of nurses' experiences of stress andcoping in caring for patients across the life span. One ofthe findings of Benner and Wrubel's (1989) study suggeststhat patients, family and nurses have different perspectivesof a patient's illness experience and that these differencesin perspectives relate to their perceptions of changes inthe patient's situation within a given time frame.The participants are able to adjust their expectationsby viewing behaviors in the context of their relationshipswith patients.^Invariably, the participants' perceptionsof and responses to patients whose behaviors are incongruentwith their expectations are significantly influenced bytheir sense of empowerment or powerlessness within in theirpractice. In the second section which follows, thesenotions of empowerment and powerlessness will be examined.Nurses' Sense of Empowerment or PowerlessnessFeelings of empowerment or powerlessness were expressedin a variety of ways as nurses talked about theirexperiences. These feelings became a recurring thememodulating nurses' perceptions of and responses tohemodialysis patients.Feeling Empowered The nurses who participated in this study spoke of54situations in which they felt they were effective in theirpractice. The concept of empowerment arises from thenurses' descriptions of such situations and is defined asmeaning being able to work well or effectively with dialysispatients. Generally, the nurses who participated in thisstudy describe feeling empowered in situations where theybring comfort and relief to patients; when patients changetheir behavior to meet the participants' expectations; orwhen patients achieve a goal as a result of strategy theyhave used in caring for these patients. Each of thesesituations reflects outcomes in which desired goals oroutcome are achieved.The participants described several situations wherethey perceived they worked effectively with patients. Eachparticipant described different issues or difficultsituations where they felt empowered. According to oneparticipant, the reason for their differences in perspectiveis that nurses are inclined to seek out patient situationswhere they feel most competent or comfortable:It depends on the problem. I think it's reallydependent on the outcome. We probably all gravitatetowards those issues that we feel we deal well with,that we either consciously really deal well with orunconsciously we tend to gravitate towards certainpeople and certain situations that we have thebackground in or the experience somehow that allows55resolution to carry forward.Gibson (1991) describes empowerment as a processinvolving a relationship with others as well as an outcomeor a property. Gibson (1991) proposes the followingdefinition of empowerment: "a social process of recognizing,promoting and enhancing people's abilities to meet their ownneeds, solve their own problems and mobilize the necessaryresources in order to feel in control of their lives" (p.359). The nurses' accounts indicate that they experiencedempowerment in ways as defined by Gibson (1990). The nursescan be seen as feeling empowered to deal with problems bothon an individual basis with particular patient problems andas a collaborative group in the unit.Empowerment Brings Satisfaction The participants also spoke of their feelings ofsatisfaction as a result of being able to work effectivelyor feeling empowered to work effectively with both dialysispatients and the nephrology team. The account belowcaptures one participant's feeling of satisfaction as aresult of being empowered to work effectively with thenephrology team, a feeling which other participants alsospoke of during the interviews:It's the combination of them all. I mean, it's thesatisfaction of obviously helping people but of beingpart of their life . . . as well and being part of ateam . . . and in our case, I think a very good team, a56very good unit that works well together. . . . It'srewarding from the very first time, you know, a newpatient comes in and you needle a new fistula or graft.To explain what's going on to just see . . . the feargo out of their eyes or you're understanding whatthey're saying, they understand what you're saying andit's perhaps not as bad as they thought it was going tobe.According to one participant, feeling empowered, thatis having the power to influence patients' conditions in theworkplace, is more difficult to achieve than having controlover the technical aspect of patient care:I think it works well when . . . they actually have arun where they don't experience those kinds of things.That's when you can feel that you've done a really goodjob and you've used your skills to help them. . . Ithink when you have more control on it yourself andthere's really not another person involved, you havemore power. You feel like you're on top of thesituation but once it branches off to another person,you have to take them into consideration and that makesyou feel powerless because it can be out of your handsat that time.This participant talks about how she feels empowered whenshe is able to provide a dialysis treatment in whichpatients don't suffer any adverse effect such as pain,57discomfort, or hypotension. This sense of empowerment stemsfrom the nurses' ability to make independent decisions aboutthe technical aspects of patient care. When treatmentdecisions other than technical aspects of care planninginclude input from patients and/or other healthprofessionals, this participant feels that she does not haveas much control over the situation and sees this ascontributing to her sense of powerlessness.Powerlessness Powerlessness is another major factor that modulatesthe participants' perceptions of the patient's illnessexperience, essential components required to effectivelymanage end stage renal failure, and compliance andnoncompliance. In this study, powerlessness represents oneof the most difficult challenges for the nurses providingcare to patients. The following account captures a generalpicture of some of the difficulties, challenges, andfeelings of powerlessness which the participant experiencedin her role as a nurse while providing care to hemodialysispatients within the constraints of the workplace:You've got to look at the reasons, where that person iscoming from. . . . They've all got different stories totell so you've go to try, I guess, and find out whattheir little story is in life and try and understand itand work it around it. . . . they must also realizethat, you know, in a situation like a dialysis unit,58where you are providing . . . this care and it's got tobe very regimented just by the very nature of thebusiness, that they only have so much leeway. Theyhave to conform to certain things like being on time .. . whenever possible for dialysis, and that sort ofthing because they can't show up at five minutes beforewe're going to close because that's not the way, youknow, that's not the way life is. So for them it'stough but . . . . that's why you have to take differentapproaches and different attitudes with everyone. Somepeople need jollying along, some people need a lot ofsympathy, some people need a firm hand and need someoneto speak to them. . . be a straight shooter and justsay, well look, you know, this is the way it is, it'stough but you've got to do that . . . you have tocomply to the rules and they fight it sometimes but Imean, what else can you do?The nurse takes into account not only the patient's personalsituation but also the restrictions and limitations of theprogram within which the patient and the nurse must reach aconsensus or middle ground. When the nurses is unable toachieve a consensus with patients, feelings of powerlessnessoccur.Miller (1983) defines powerlessness as "the perceptionof the individual that one's own actions will notsignificantly affect an outcome. Powerlessness is a59perceived lack of control over a current situation orimmediate happening. When one or more of the powerresources of physical strength, psychological stamina, self-concept, energy, knowledge, motivation and belief system arecompromised, powerlessness is a potential problem" (p. 38).The findings of this study are in keeping with Miller's(1983) definition of powerlessness as the nurses in thisstudy frequently experience an inability to influencepatient behaviors or work place conditions such that nursescould help patients achieve a desired goal.Emotional Impact of Feeling Powerless Throughout the interviews, the participants spoke ofthe emotional impact of feeling powerless in their practice.One participant describes the frustration, self doubt,guilt, and anger experienced when she felt powerless inbeing unable to influence a patient to follow the dialysisregime:P: I think it's the chronic person that does itrepeatedly. . . . That's where you get frustrated. .. It keeps happening. . . . Nothing changes.I: How does that make you feel as a nurse?P: You wonder if you're doing you job properly. Whyisn't it coming across? You feel frustrated and thenwhen you tend to say well, I'm not going to botheragain. I think there's a little guilt process thereafter awhile too. A lot of times . . . you become60angry with them. Not out and out angry with them, likeshouting at them, but you just have the attitude wherewell fine, you sort of ignore them practically. Youput them on and it's like here you go. This is all youwant, this is all you're going to get. . . . You givethem their treatment, you do everything you're supposedto for them, but that's about it.Another participant explicitly states her perception ofhow powerlessness was the source of frustration for dialysisnurses. Further, this powerlessness is perceived asstemming from discrepancies between the patients' and thenurses' beliefs and values about the most effective way tomanage the patients' illness:Powerlessness is the root of frustration that the staffhave. . . . The mismatch of values as to what thepatients want and what we think they should want.Conflicting Treatment Philosophies Further Increase Powerlessness The investigator has presented several of theparticipants' beliefs about what is seen to influence thenurses' expectations of patients in managing their illness.Two of these views are paradoxical and created a conflictfor the participants. The first view is that patientsshould take responsibility for themselves by following thedialysis regime. The second and opposing view which wasfrequently repeated by all of the participants is that" you61can't force" or "shouldn't force people" to takeresponsibility.In the following excerpt, a participant expresses herbelief about not forcing patients to take responsibilitywith a metaphor:We want to say this is your ship, you know, here's thetools to navigate it. We'll be here if a strong windcomes up and you go a bit off course, but it's yourship. It's not my ship. I don't live with it twentyfour hours a day. I don't go to work with it. I don'thave to battle with it. It's not my ship. It's yourship. It seems odd that one would have to say I'mgiving it to you. It's always been their's.The participants share another belief that nursescannot impose their expectations on patients who eitherdon't have the intellect or the interest to learn about thedialysis regime and follow it. As a result of not beingable to influence these patients, nurses feel powerless intheir practice:I've learned that, I think over the years, that they'vegot their own free will. You can't force your issueson them. . . . Yeah and that's probably where thefrustration in the unit stems from, that would be agood statement really, in a nutshell, powerless. Maybethat's why we all get so hot under the collar.6 2Sources of Empowerment and Powerlessness The investigator will now examine the sources ofempowerment and powerlessness for the nurses whoparticipated in this study which are the nurse-patientrelationships, some of which has already been discussed, andthe work environment. However, the nurses' accountsindicate that the primary source of empowerment andpowerlessness is derived from the nurse-patientrelationships.Empowerment in the Work Place Nurses' experience of empowerment in the work place canbe seen as deriving from being able to solve problems as aunit. Effective problem solving is said to be made possibleas a result of mutual concern and support from peers,colleagues, and patients which the nurses experience ontheir unit.Our problems, really, we've been able to contain.we've dealt with them ourselves. . . . I think thatthat's another secret of the success of this unit isthe patient and staff do really sort of look out forone another and work together . . . that goes to . .form a very solid base to be part of.This participant's account also reflects her perception ofthe importance of the collaborative nature of relationshipsbetween peers, colleagues, and patients as a determinant ofempowerment among hemodialysis nurses. The second and more63frequently mentioned source of empowerment for the nurseswho participated in this study derives specifically fromtheir relationships with patients.Nurse-Patient Relationships Although none of the participants explicitly refer totheir interpersonal interactions with patients asrelationships, some of the participants use the word rapportwhen talking about relationships with patients. Regardlessof the term used, it was evident during the interviews thatparticipants want to establish a relationship with patientsthat would enable them to work more effectively with themand ultimately, help patients maintain a normal life:It's knowing the patient and what and where they'recoming from and that's all part of the specialrelationship that dialysis nurses and patients and thewhole staff has to have.^. . Although there aretechnical skills obviously required for dialysis but alot of it as well is dealing with the emotions and thelong term problems.This nurse believes, as did the other nurses whoparticipated in this study, that her relationship withpatients extends beyond providing technical care. Rather,she perceives that it is just as important to develop aninterpersonal relationship with patients. Suchrelationships are viewed as enabling the nurse to providemore effective care to alleviate emotional distress and to64help patients cope with their problems.A review of the literature indicates that as early asthe 1960's, nurses were expected to establish a rapport withtheir patients (Travelbee, 1963). The term rapport is saidto be an elusive concept to which nurses assign a differentmeaning. The findings of this study also indicate thatnurses assign different meaning to the rapport they havewith patients. The differentiating factor appears to be inthe kind of information nurses seek from patients to helpthem problem solve. According to Travelbee (1963), rapportis more than having 'harmonious relationships' (p. 70) orcooperation between two individuals. Rather, rapport is anevolving dynamic nonjudgemental process whereby thoughts andfeelings are exchanged such that with time there is asharing of mutual concern and interests between twoindividuals. It can be concluded that rapport is "thecatalyst that transforms a series of nurse-patient contactsinto a meaningful nurse-patient relationship (Travelbee,1963).A key factor which seems to determine the nature ofnurse-patient relationships in this study is the degree towhich the participants perceive that patients reciprocatethe nurses' efforts to manage the patients' illness. Thenotion of reciprocity is based on two essential elements:shared responsibility with patients and mutual respect.Based on this notion of reciprocity, the investigator has65characterized nurse-patient relationships into two types:positive nurse-patient relationships and difficult nurse-patient relationships. The notion of reciprocity makesthese types of relationships mutually exclusive.Elements of nurse-patient relationships perceived as positive. The most significant feature of a positive nurse-patient relationship is the mutual respect between nursesand patients who reciprocated their effort to help patients"make the most out of life". The nurses perceive thatpatients who reciprocate their effort share theresponsibility of achieving the common goal of "making themost out of life" without putting their lives at risk. Thenurses interpret the patients' actions as valuing andrespecting the nurses' approach and their efforts to managethe patients' illness. The nurses in this study spoke ofseveral patient behaviors which they perceive reflect theprocess of patients sharing the responsibility with nursesin managing the patients' illness. These patient behaviorsinclude: showing an interest in learning about the regime;following the dialysis regime; and admitting to, andaccepting responsibility for, not following the restrictionsof the dialysis regime.The participants respected patients who showed aninterest in learning and an eagerness to take part in thedialysis regime. These patients were said to have a"perfect" or "positive" attitude because they were66motivated, "want to take control", or "want to knoweverything" about the dialysis regime. In addition, theparticipants perceived their relationships with suchpatients as being positive because they were able to workmore effectively with them:You don't like them any more [than other patients].They're easier in that you put them onto the machine,you're not worrying that they're going to be sick onthe run . . . . They're interested when you sit downand talk about their blood work or the pills . .they'll take an interest in the machine and what'sgoing on.^. It's easier with the one that complies.. . It's easier in that it's less frustrating.This nurse indicates that a positive relationship withdialysis patients is not necessarily based on liking onepatient more than others. Rather, a positive relationshipis viewed as one in which patients and nurses share aninterest in working together, live up to theirresponsibilities, and are able to achieve a mutuallyacceptable goal.Most of the participants expected mentally competentand physically able patients to have an interest in learningand to actively take part in the dialysis procedure.However, as one participant's account indicates, nursesassigned greater value to patients' interest in learningabout the dialysis regime than having patients taking part67in the dialysis procedure:Some of them will come in with hardly any weight gainand they'll have good chemistry, so they'll follow thediet, medication part, but they just don't want . .to even know what that buzz on that machine means.. You can't force somebody to be active in theirtreatment if they're really are not going to. So youjust have to accept it. .^. That's okay, I mean ifthey really don't want to be part of the treatment Iguess . . . as long as they follow the rest of it. Imean if they don't want to know anything about dialysisbut they're willing to follow their diet and bloodpressure medications . . . and we don't have to be inon call all the time with them and . . . . I think it'salright not to know anything about this machine andneedles.The participant acknowledges that patients vary in theirscope of interest in learning about the dialysis regime andconveys respect for individual preferences. Thisparticipant's account reveals the boundaries she is able toset in establishing mutual responsibilities with patientsthat are acceptable to her.The participants also described how patients who showedan interest in learning not only about the dialysis regimebut also in maintaining their interests outside life ondialysis facilitated their relationships with dialysis68patients:There's just certain individuals I can relate to betterthan others. . . . it's probably personalities, it'show you relate to anybody, isn't it? .^. There arepeople that you can talk to or relate to really easily,others you just don't seem to have any interest incommon with them, it's a lot harder to deal with them.. . It's easier to deal with people who have a lifebasically other than dialysis because they've alwaysgot something interesting to say, or they've done someor they're looking forward to something. . . . Thoseare the ones that are a lot easier even to try to tellthem about the medications and things because they'refar more receptive because they've got other things intheir lives. They just want to take what's going tomake them feel the best and get on with it.The participant perceives that having shared interests withpatients improved communication and enhanced their abilitiesto work effectively with patients.The nurses who participated in this study alsorespected patients for being accountable for their illnessmanagement behaviors. The participants spoke of patientaccountability in terms of admitting to not following thedialysis regime and accepting the responsibility for theconsequences of their actions. The following accountillustrate the process whereby nurses' perceptions of their69positive relationship with patients are unaltered by theidentification of patient behaviors usually labellednoncompliant:I get along well with Mr. X. . . . I think he likes mewell enough. He's always telling me this personalstuff. . . . and with someone like that you don't pokeand prod, you just leave it at that. . . . Maybe's he'sgaining weight. I do trust X with his diet. What hesays I usually believe. I really do because he's beenon it long enough . . . and I do believe that he doesthe best that he's supposed to do.The nurse relies upon her knowledge of the patient and thetrust which she has developed over time in this positiverelationship to interpret the patient's behavior. Knowingthe patient allowed nurses in this study to alter theirperceptions of individual patients. According to Benner andWrubel (1989), knowing the patient has been identified as animportant component of an expert nurse's assessment such aswas reflected in this nurse's account.In keeping with the nurses' interpretations of patientbehavior over time, participants also assigned a differentmeaning to patient behaviors if patients were new andunfamiliar with the program or if patients, who were not newto the program, occasionally did not follow the regime.Invariably, participants did not disapprove of patientbehaviors in these kinds of circumstances and perceived that70it is normal for patients to want to partake in life eventseven if it means not following the regime:If it's once in awhile . . . everyone goes on binges,look at what people do at Christmas time, you know youeat more yourself, or if someone's birthday comes up ora special occasion . . . extra load on but that's noproblem.One can also conclude from this segment that these patientsusually follow the restrictions of the regime and in doingso, convey respect for the nurses' approach to manage theirillness or her efforts of helping patients get the most outof life. This response is evident even when patients do notcomply with the regime but are honest:I don't even mind if they come in with eight kilos aslong as they said, I know what I've done but I've had agood time, um and I don't really care. We have somepatients that will say to us I'm here for a short time,not for a long time and I'm going to enjoy my lifestill and carry on with my friends and I can respectthat.The nurse conveys her respect for patients who admit to notfollowing the regime, who share their philosophy towardslife and living with end stage renal failure, and acceptresponsibility for making the decision not to follow it.Taken in the context of the findings of this study, thenotion of reciprocity can be seen as instigating positive71nurse-patient relationships.The nurses' accounts reflect a mutual sharing ofresponsibility with patients in managing the patients'illness to "make the most out of life". This notion ofmutual sharing of responsibility is akin to what Allee(1979) defines as reciprocity: "an action and reaction; thedischarge of mutual duties or obligations" (p. 307).In the following subsection, the investigator willpresent elements of difficult nurse-patient relationshipsand organizational constraints which nurses viewed ascontributing to their sense of powerlessness in theirpractice.Elements of nurse-patient relationships perceived as difficult. Participants' accounts reveal that the essenceof difficulties in nurse-patient relationships is theabsence of reciprocity between the nurses and patients inmanaging the patients' illness. The most significantfeatures of these relationships are the nurses' views of thepatient as being irresponsible and conveying a lack respectfor nurses. These features are characterized by patientbehaviors such as being disinterested in learning or takingpart in the dialysis regime. The nurses who participated inthis study talked about their responses to such patients interms of how they can not respect them for behaving thisway. The nurses also talked about how they are unable towork effectively with patients whom they view as72irresponsible and/or lacking respect for nurses and theirrole in managing the patients' illnesses. Consequently,nurses felt powerless in their relationships with suchpatients.One of the most significant components of nurse-patientrelationships which nurses perceive as difficult is patientirresponsibility. The notion of patient irresponsibilityarises when the participants perceive that patients'noncompliant behaviors are persistent despite efforts tonegotiate with patients in an attempt to accommodate themand arrive at a mutually agreeable compromise.^Oneparticipant gives a very colourful description of a patientwhose behavior she describes as "irritating" because hewould not change his behavior. Consequently, theparticipant has labelled him "the king of noncompliance":There's a young male patient who's consistently anhour or an hour and a half late, every single one[appointment], blood pressures are sky high.. . . Hedoesn't want to take his medications. He doesn'tfollow the diet. He's always late, and he won't talk toanybody. . . . I'm always irritated by that.^Weswitched everybody around so that he could run Monday,Wednesday, Friday, have his weekends completely free,on the understanding that he would show up on time.Nothing changed at all. . . . His weight gains aren'tas bad as some people's weight gains, considering that73he's got an active life style . . . and he drinks cansof pop and stuff like that. It's not that bad althoughstill higher than he should be.Another participant perceives that patients whorepeatedly come in with excessive weight gains in betweendialysis treatment are abusing their bodies to the extentthat they risk killing themselves if they continue with suchbehaviors:When you do get the people who just abuse completely,you know, we used to have one lady that came in and shewas ten or twelve kilos overloaded in between a two dayrun . . . she couldn't breathe . . . we put her ondialysis for five or six hours and then you'd find herout in the hallway smoking with a can of pop anddrinking and just doing the same thing all over again,and everybody had a go at her, everybody talked to her,and I mean eventually she did kill herself. It was assimple as that. I mean it was one day she didn'tsurvive these horrendous weight gains. . . . When theystart abusing their bodies to that extent, you've gotto, uh, let them know in no uncertain terms that it's asuicide mission that they're on if they continue whichit is.This participant's account reflects her frustration not onlyfrom observing patients putting their lives at risk but fromthe recurring evidence of "irresponsible" patient behaviors74such as indiscriminate fluid intake. These behaviors areseen as particularly frustrating because they negate thenurse's efforts to help patients manage end stage renalfailure by removing excess fluid which patients have gainedin between dialysis treatments.The participants also describe patients who adopt theextreme opposite attitude towards following the dialysisregime. Participants perceive these patients as followingthe dialysis regime too closely. Some participants labelsuch patients as "totally obsessed" and perceive theirbehaviors as interfering with the patients' ability and thatof their significant others to carry on with "normal" lives.Hence, some of the nurses also describe such behaviors asirresponsible:There are some patients who will do everything youtell them . . . and, just seem to forget abouteverything else. They stick to their diet. They taketheir pills exactly on time and, um, they are probablywhat we call the good patients. . . . Yeah, so calledgood patients but I don't think that it's a good ideato be that way because the patients isolate themselves.They think about their disease so much that everydaytheir life becomes their disease. They can't go outand eat or if they are going to a restaurant they willphone ahead a time.^. . They might be good patientsbut I don't think they, themselves, get much out of75life . . . if you are that compliant. . . . There aresome strange patients. . . . they are that type ofpeople . . . extreme.The participants disapprove of either of these extremeapproaches and perceive them to be undesirable because theyare seen as preventing patients from achieving the goalswhich nurses have for patients: "making the most out oflife" or having a "normal life" while not putting theirlives at risk. Therefore, both extreme approaches towardsthe regime are also seen as "irresponsible" patientbehaviors.Other participants spoke of irresponsible patientbehaviors in terms of patients' disinterest in learningabout the dialysis regime and/or following it. Someparticipants view patients' irresponsible behaviors as being"reckless" or "taking risks". Other participants perceivethat patients' apparent disinterest in following theirrecommendations is related to the patients' beliefs abouttheir illness, its treatment, and their responsibility inmanaging their illness. Statements that reflect theparticipants' perceptions of the patients' beliefs include:"one day they will be cured", "that things are being takencare of", "they deny having renal failure", or they "don'twant more worries".Patients whom the participants perceive asrelinquishing responsibility to health professionals are7 6also seen as being irresponsible for not participating inthe decision making process of managing their illness. Theparticipants perceive that patients who behave in thisfashion view health professionals as being moreknowledgeable about the management of their illnesses.Consequently, these patients defer the responsibility tocare for themselves to the health professionals:The other group are really accepting. . . . put doctorsfor sure on pedestals. . . They're treated with suchreverence that any thing they say is, written in stone.. . . It's distressing to know that there are peoplelike that. . . . They're hard people to talk to toobecause they don't want to share any of their thoughts.They think . . . you are therefore more clever thanthey are when it comes to the medical end and you knowhow could they possibly have any good questions to ask.Other participants have said they thought patients aresometimes disinterested in following the regime because theydo not value the treatment and would rather not have startedon dialysis.We've even had people who have . . . been talked intodialysis. The people who were elderly, who didn't wantto go on dialysis when it was explained to them but . .. because of family pressures on them, they go on . • •for awhile, but, uh, they eventually do sort of succumbto the gut feeling that they had in the first place,77that, this is the end and, uh, they don't want any moredialysis. They didn't want it in the first place. Theydid it sometimes to please a loved one or whatever .. often that, the noncompliance is all part of thatscenario . . . they don't want it anyway.The other most significant component of nurse-patientrelationships which nurses perceive as difficult ispatients' lack of respect for nurses. The nurses whoparticipated in this study frequently express concern aboutpatients' disrespectful attitude towards them. It is thedisrespectful manner in which patients convey theirdisinterest in learning about end stage renal failure andits treatment that contributes to nurse-patientrelationships which the participants described as difficult.The participants used phrases such as "not their job" or"you get paid to do this, you do it" to reflect thepatients' responses to being asked to take moreresponsibility in managing their care. As a result ofpatients' attitudes seen as irresponsible, nurses perceivedthey "don't stand a chance of teaching patients anything".The following account captures the nurse's view of theirresponsible patient attitudes in terms of not taking partin what the nurse perceives as a simple but extremelyimportant procedure:It doesn't seem to click that if my hands will stop it[bleeding fistula], how come their hands couldn't stop78it? . . . I've seen them walk blocks to come back forus to hold the site that they could have stopped in twoseconds somewhere. . . . I tell them that you're prettysilly. You could have bled to death out in the parkinglot, like, hold it. . . . Well, she's not exactlyrunning on high IQ but I did give her quite a lectureabout the next time, put your finger on and she saidit's not my job. . . . Well, she's not exactly toosmart to say that, cause it's not my job to hold itas in I'm the patient, but it's certainly my blood soyou would think you would want to stop it.Some of the participants perceive that the patients'disinterest in learning about the regime and theirdisrespectful attitude is also due to their need to be incontrol. Conceivably, patients' needs to take control inmanaging their illness are inadvertently or unintentionallyexpressed in an aggressive or hostile manner wherebypatients "treat nurses as servants", "snapping", "yelling",and "ordering nurses around".Other patients, the only way they can cope is by havingyou run around and snapping and dictating and that'sthe way they take control.While the nurses can accept that the patients areangry, stressed, and sad because of their health status andlife circumstance, such feelings directed to the nurses areinterpreted as disrespectful. Such behaviors are not only79viewed by nurses as disrespectful, but to them it conveysthe patients' irresponsibility in striving towards achievingmutually agreeable goals within the nurse-patientrelationship. Milliken (1969) supports the view thatattributes patients' verbal aggression such as "criticism,loud talking, profanity, or refusal to cooperate" (p. 157)to patients' hostile feelings of fear or anger and statesthat nurses should not interpret as personal affronts.However, the nurses' accounts indicate that they haddifficulty in not interpreting patients' verbal aggressionpersonally.The participants had little respect for patients whomthey perceived as "self-centered", "using up your time", ornot having any regard for the needs of other patients or therole of the nurse in providing care to the many otherdialysis patients. In discussing common patient copingbehaviors, Milliken (1969) refers to patients' self-centeredbehaviors as egocentrism. According to Milliken (1969),patients' egocentric behaviors are reactions to illness andshould not be misinterpreted as selfishness. The findingsof this study indicate that nurses sometimes interpretpatients' egocentric behaviors as selfish acts.In the following account, the participant describes apatient whom she and other nurses perceive as havingdisregard for the needs of other patients and the nurse'sobligation of caring for them:80Again it's just one patient who we all categorized asthat way. . . . she's got a lot of problems but I thinkwhen she first arrived in the unit she was used toservants. . . . She'll argue over fluid gain with you .. . you'd have to get the doctor in to argue with herbecause she wouldn't listen to you. . . . If it wasonly me that personally had a problem with her, thenI'd probably have to step back and think oh, what areyou doing here, you're not being professional but Ihave clear conscience and say that she drives everybodycrazy for the same reason. . . . when you've got allthe other patients around, it becomes difficult becauseyou can't meet every demand. She starts shouting tocome off and someone else is throwing up and it's whatabout me.The following excerpt illustrates the participant'sdisrespect for what she considers patients' lack ofaccountability when they don't admit to not following theregime:But it's people that come in with eight kilos on andthen lie, not lie to you but they go "I didn't know howthat happened". . . . at least be honest with me. ..I can respect that a lot more than just saying well, Idon't know how this happened.It is apparent in this account that the participantinterpreted the patient's actions as irresponsible.81Every participant's account of irresponsible behaviorsreflects their powerlessness to influence patients to changetheir behaviors. The most common patient behavior whichparticipants describe is when patients repeatedly gain moreweight between dialysis treatment than is expected despitenurses' efforts to convince patients not to gain so muchweight. One participant describes the futility of trying towork with patients with this "chronic problem":Because it seems that the chronic problem, every singletime, they're coming in with seven kilos on, then itbecomes really frustrating and you get the attitudewell if you don't care, I don't care. I'll just putyou on and we'll try to get off as much as we can butif you're not prepared to take responsibility for yourlife, I'm not going to keep banging my head against thewall 'cause you're not listening to me or I don't wantto be bothered wasting my breath. I'm sure there'sother people out there that want to learn something andwant to take responsibility, and I'll spend my timewith them, helping them rather than wasting my breathon you. I think it's the chronic person that does itrepeatedly . . . that's where you get frustrated.This participant expresses her disrespect for patients'irresponsible behavior both for the potential harm tothemselves and for the way in which their repetitivebehaviour inconveniences and possibly endangers others82delayed in being dialysed. Her sense of powerlessness ininfluencing patients to change their behavior gives rise tofeelings of frustration.While nurses frequently spoke of nurse-patientrelationships as a source of powerlessness, they alsoperceived themselves as powerless in working within theconstraints of the organization.Organizational Constraints The nurses who participated in this study spoke ofconstraints within the organization primarily as a secondsource of powerlessness in providing care to hemodialysispatients. The participants' discussions indicate that theyfrequently experience powerlessness as a result of opposingtensions created by the demands and restrictions of theworkplace over which the nurses perceived they had nocontrol. These tensions impact on the nurses' perceptionsof noncompliant patient behaviors and are significantcontributing factors in their labelling patients asdifficult and showing their intolerance for such behaviors.Constraints within the workplace include timerestraints, availability of dialysis machines, the workschedule, patient acuity, and limited resources such asnursing staff. The participants describe time restraints interms such as: "working to a time schedule" and "always on afixed schedule". The participants also describe restraintsin terms of the limited number of dialysis machines83available compounded with an increase demand for dialysis:"...there's not enough space and there's not enough staff",and having "to deal with three lots of patients sometimes".Other conditions of the workplace include the demands of thework schedule: "work four days in a row", the patient acuitylevel: " a lot of med surg nursing...a far larger demand tobe always dialysing but you're also doing all the other careon a regular basis", and patients are "older, sicker, andmore acute".Disruptive patient behavior. Participants describetheir experiences of caring for patients who becomeprecariously ill during dialysis, an occurrence which theyperceive could be prevented if the patients had followed therestrictions of the regime.^The next excerpt illustratesthe participant's sense of powerlessness when a patient'sbehavior affects not only his well being but also impacts onthe functioning of the dialysis unit:We're the ones telling them like hey, you just gainedfour kilos, you're not eating or drinking anything elsefor the rest of the run, that's it . . . 'cause that'sbest for you. . . . I just feel like that's my job isnot to give into it, like you know, set the limits. .. because it's really important for, not only theirhealth, it's affecting the care in the unit. . . . Thefact that they're crashed out on the floor and youcan't get them out everyday and holding up beds and84things . . . then it becomes a big issue. . . . Thenext person can't get hooked up. They have to sit inthe waiting room and wait for an hour because . . . sothen that becomes not fair. . . . that's involvingother people then, not just themselves. . . . You endup lots of times moving in an extra bed . . . squeezingpeople in who have to have a time limit because peoplehave to get their rides home. . . . You know you endup disrupting the whole unit, you get the doctorsafter you. . . . You have such a tight schedule . .there's no leeway now.In this scenario, the participant feels powerlessbecause she is caught between increasing demands andconstraints of the dialysis program and not being able tomeet her goals for the patient.All of the participants conceded to feeling powerlessin light of the increasing demand for dialysis, the limitednumber of dialysis machines, the restraints of governmentfunding, and the inflexibility of the dialysis program. Thefollowing account illustrates how the constraints of theworkplace further restricts patients and nurses in engagingin dialogue for the purpose of reaching mutually agreeabledecisions, and ultimately, working well together:There are times when you feel, as you say powerless .. our hands are tied and there is not much we can do.A lot of times it has to do with the new patients that85are coming onto the program and there is no room forthem and the doctor will say this person has to be donebut it's like where do we do them? . . . There's noroom. The government has stopped its spending, thehospital has a limited number of beds, all of thoseare filled and every week they come with another threeor four that have to be done and if they don't get onthey die basically. But what can you do? You feelpowerless, there's nothing you can do.Lack of control. Another participant's accountcaptures her feelings of powerlessness in terms of nothaving any control over conditions in the workplace such aslimited resources:The only thing is the fact that they are expecting usto deal with so much without staff replacement andthings which we have no control over. So you end upworking short of people. Yeah, you have no controlover that a lot of the them and you know it's reallynot fair they're expecting a lot of things and ifsomething happens they certainly hold you responsiblefor that, even though you were working far too short tohave safe coverage. But you would be responsible ifsomething happened. And that's sort of a powerlessfeeling isn't it? But really you can't do anythingabout it at that time cause it usually happens and whenit's happening it's too late to do something.86The participants described their experience ofpowerlessness in the workplace as a result of limitedresources and the increasing demands for dialysis. As aresult of these conditions in the workplace, participantsdescribed feeling "pulled in all directions" and perceivethat working with dialysis patients "becomes rather afactory line."The participants also perceived that the constantdemands over which they have no control and resultingpressure in the work place affect the way they interactedwith patients. Inadvertently, the participants weresometimes abrupt with patients, a behavior which causedparticipants to feel guilty:I think that when you're under pressure, you know, itdoes affect how you treat other people even how youtreat people you're working with. If you've done fourshifts in a row and you're tired and all these things,you're going to be more short than you should be andit's hard to keep separate from working even if youdon't mean to be that way. It might come out in termsof your voice and that's happened to me. . . . I feltreally guilty about that because she didn't deserve it.. . I just felt terrible for the whole day after that. . cause I made her feel bad.The Canadian Nurses Association (1991) recognizes nurses'reactions such as the one mentioned in this account and87identifies it as ethical distress. "Ethical distress occurswhen nurses experience the imposition of practices thatprovoke feelings of guilt, concern or distaste" (CanadianNurses Association, 1991, p. iii).In the final section of this chapter, the investigatorwill discuss how nurses coped with powerlessness in theirrelationships with patients and in the workplace.Coping With Powerlessness The participants' accounts of their working conditionsand their feelings of powerlessness to control or influenceindicate that these could be potentially overwhelming.Given the average length of time that the participants havebeen working in the dialysis setting, the question wasasked, how do these nurses cope with powerlessness?P: We live with this everyday. . . . I think that ifall nurses all stop and think about it, you'd be kindof upset about it. You'd have no nurses. They'deither all quit or they'd all commit suicide. It'sself preservation as well.I: Not to think about it?P: Or you burn out.I: Do you have denial in your work then?P: I'm very aware of what's happening but I don't dwellon it. . . . You accept to a certain degree, well thisis how this person is going to be.The participant acknowledges the daily problems of working88with hemodialysis patients within a tremendously constrainedwork setting but perceives that nurses would not be able towork effectively, if at all, if they focused on thesedifficulties.Strategies to Work Effectively Within Constraints of the Organization The participants descriptions also indicates thatproviding care for maintenance hemodialysis patients is verystressful. The participants perceives that some nursesexperience burnout as a result of the constant demands fromindividual patients as well as the demands and constraintsin the dialysis unit. However, the participants describedseveral strategies which they used to effectively managework related stress: using humor or cajoling; ventingfeelings to their peers on and away from the dialysis unit;and consulting other members of the team to intervene withdifficult patient situations. All of these strategies wereseemingly perceived as being equally effective but werecontingent upon the nature of the relationships they hadwith either the patients or colleagues who were also on dutyat the time of a particular conflict or stressful event.The participants' descriptions of their use of humor inthe workplace centered around stressful patient situations.The participants perceived humor or cajoling as effectiveand appropriate approaches to convey the concerns theyshared with patients:89In my view, humor is a therapeutic tool. If you canlighten up the situation and try not to make dialysis adrudgery or an awful afternoon . . . I'll tap dancewith them in the night (chuckles). I'll even tell themdirty jokes depending on the patient and I'll beforthright with some of them. . . . You get to knowthem so well. I think being honest and opening up alittle bit about yourself, they appreciate.This nurse empathizes with the patients' indefinite plightof coming for dialysis and the patients' need to alleviatethe distress of this experience. Based on the findings ofher research on the use of humor among patients, Coser(1965) proposes that humor and laughter serve to decrease"social distance" (p. 293) and a means to share commonconcerns. Coser (1965) cautions that the findings of herresearch are limited to this population and cannot begeneralized to other groups wherein there is inequality ofstatus such as when humor is used between patients andstaff. Although the data in this study indicate that nursessometimes use humor in their interactions with patients toindicate their disapproval of patients' behaviors, thesefindings partially negate Coser's (1965) suggestion andindicate that nurses' use humor in the context of both newand evolving long term relationships to close the status gapbetween nurses and patients. In empathizing with thepatients and using humor in sharing the patients'90experience, nurses' accounts of using humor in theirrelationships with patients reflect their attempts to"decrease the social distance" and share a common concernwith patients.Several participants spoke of the importance of timeaway from the dialysis unit:That's why we've been able to work in line of nursingfor so long is that we're able to get away for thosedays off and to get away from some of the problems . .. . That gives you time to breathe, get outside andenjoy your other life. I think it's a very importantcomponent of being successful in this sort of work, isbeing able to divorce yourself from it when you're awayfrom the job.Time away from the unit provides nurses with the opportunityto temporarily disengage themselves from the challenges anddifficulties of working in such a setting. Time away fromthe unit is therefore another strategy which is effective inalleviating stress.Turning to Colleagues The participants coped with their sense ofpowerlessness by turning to colleagues for support anddirection. One participant's account illustrates how she isempowered to work effectively in her practice because of thesupport which she perceives she receives from her colleaguesand dialysis patients:91The staff are a very big part of it, being able tofunction long term in a situation like this becausewithout them to support you . . . it wouldn't work. .. . That's the secret of the success of this unit isthe patient and the staff do really sort of look outfor one another and work together and the patients evenare concerned and interested in the staff's well beingif you like, as well as vice versa.Some participants spoke of working with colleagues inplanning a multidisciplinary approach to provide care forpatients with whom they experience powerlessness in theirrelationships. The effectiveness of this process isillustrated in a participant's account:You can only do so much and then you get the otherhealth care workers to provide the plan. You go to thepatient and say this is what we see. How do you seeit? This is . . . sort of our contract that we'redevising. . . . You have to take responsibility ontoyourself and these are the consequences. If you don'tdo this, there's nothing more you can do. You have togo look after these other patients.Using Guidelines The nurses who participated in this study spoke ofusing guidelines to respond to patient issues they perceiveas problematic or to use resources more effectively. In thefollowing excerpt, the participant describes being empowered92in her practice by guidelines currently being developed bythe nephrology team. The participant perceives that theseguidelines will enable her to work more effectively withverbally abusive patients who won't accept responsibilityfor the consequences of not following the dialysis regime:The rounds I was just at with the doctors, socialworkers, dieticians, they feel that we're not acceptingthese people yelling at us. We're going to setguidelines. . . . It's just the realization that thereare limits to be made and certain things are acceptableand certain things aren't and the options are if youdon't like the area and you don't want the treatmentthen feel free to make a choice. . . . These are yourregular patients. They know what renal failure is.They know what they're doing. They just want to bereally rude or just really noncompliant and if theywant to leave, well yeah, they're accepting theirresponsibility for themselves.This participant is able to cope with situations in whichshe feels powerless such as when patients are "rude" or"really noncompliant" as a result of collegial support tohelp her set limits on behaviors viewed as unacceptable.This participant feels justified in setting limits becauseof her belief that "It's a privilege to be in the unithaving treatments and there's line ups of patients waitingfor it if they don't want it".93Reconciling Feelings of Powerlessness in Nurse-patient Relationships Finally, the participants reconciled their feelings ofpowerlessness when working with difficult patients byreexamining the goals they had for patients and/or trying tounderstand and accept the patients' behavior and approachesto managing their care.Modifying patient goals. The following excerptillustrates how one participant reconciled feelings ofpowerlessness by modifying her goals for the patient:Well you sort of give them just basic care. You makesure that the machine is running properly, that theneedle is in. . . . Get them through dialysis and ifthey have any questions, I answer them for them. But ifthey're not willing to accept it, I'm not going towaste my breath and sit there and talk to them allday long. You give them the information and it's up tothem if they are going to use it or not.Reevaluating patient approaches. Another participant'saccount demonstrates how feelings of powerlessness arereconciled by getting to know the patient and reevaluatingthe patient's approach to achieve the desired goal:P: You know they're feeling that they're doing whatthey have to do which is take these pills because thedoctor told them to and show up here three times a weekand maybe life is less stressful for them because of94that. I mean they get by.I: And you think getting by is their goal?P: Sure, probably is with every other aspect of theirlife too. . . . Well I think you just get to know themas individuals and you'll know very shortly . . . justwhere they fall into the scheme of things. . • •There's a group of patients that . . . after yearscouldn't meet one of your goals or objectives and maybenursing turns a blind eye to that. All people just donot want to know about this information. . . . The waythey look at it is so totally different from what wedo. I mean we think that information and knowledge isreally important and they should all have this, it's amust. Now there is clearly people in there who do notfeel the same way about it and I don't know if they'reany worse or better off.This participant copes with her sense of powerlessness toinfluence this patient by making exceptions for andconveying respect to patients by modifying her approach tosuit the learning needs of these patients. Anotherparticipant shares this nurses' approach to reconciling hersense of powerlessness when providing care to patients whosebehavior she cannot influence to change.It's an existence for them. All they can lookforward to is having a transplant and then somenormality otherwise this is what my life is like and95I'm going to live it within the boundaries that areacceptable to me. And perhaps that's where my feelingof stopping nagging them so intensely comes in becauseyou respect what they're ultimately are deciding forthemselves. . . . It's not that you don't care, butthere comes a point when you feel you've met yourresponsibility 'cause ultimately this is your job.They've got their rights and as long as I believe thatthey understand what I'm saying to them then . . . Ifeel I've met my obligation or my conscience.This participant perceives to have fulfilled herprofessional responsibility and feels justified in no longertrying to convince the patient to follow the dialysisregime. The participant's respect for the patient is basedon her belief, which other participants also share, thatpatients have a right to decide how they are going to livetheir lives. This finding is consistent with Vincent's(1985) view that in the absence of ill effects, nurses aredirected to assess the patients' health status andreevaluate their goals for and expectations of patients whenthey have not been following the prescribed medical regime.Summary StatementNurses' perceptions of compliant and noncompliantpatient behaviors and their responses to patients whosebehaviors they perceive to be noncompliant are revealed asbroad and complex issues which the nurses encounter in their9 6daily practice. The complexity of such issues appears torest with the incongruence between nurses' and patients'perspectives about the most effective approach to managingend stage renal failure. The nurses who participated inthis study are challenged by the dilemmas that arise as aresult of their beliefs that are sometimes dichotomous.These beliefs center around the requirements of the dialysisregime and patients' rights and responsibilities in managingnot only their illnesses but also their lives.The nurses' judging and labelling compliant andnoncompliant patient behaviors are related to their sense ofempowerment or powerlessness in their relationships withpatients. Situations in which the nurses perceive they canachieve a desired goal as a result of mutual respect andreciprocity within their relationships with patients createa sense of empowerment in nurses. In these types ofrelationships, nurses who participated in this study tend totolerate what they perceive as noncompliant patientbehaviors. Work place conditions such as mutual concern andsupport from peers and colleagues also seem to fosterempowerment in nurses. Conversely, some nurses perceivethat nurse-patient relationships which lack reciprocity andmutual respect hinder their ability to achieve a desiredgoal for their patients. Furthermore, these nurses tend toview noncompliant patient behaviors more negatively in suchnurse-patient relationships. Constraints within the work97place are seen to compound the nurses' sense ofpowerlessness and tend to exacerbate nurses' negativeperceptions and intolerance of patient behaviors perceivedas noncompliant.The nurses' accounts frequently reflect theirfrustration as a result of an overriding sense ofpowerlessness in striving to help patients manage theirillness most effectively. However, these nurses are able toresort to several strategies to effectively cope with theirnegative emotions. The two most effective coping strategiesnurses use are turning to peers and colleagues for supportand direction, and trying to re-evaluate and accept thepatients' behavior and approaches to managing their care.98CHAPTER FIVE: SUMMARY, CONCLUSIONS, IMPLICATIONS ANDRECOMMENDATIONS FOR FURTHER STUDYSummaryUsing a phenomenological method, the nurses'perceptions of, and responses to, in-hospital maintenancehemodialysis patients whom they perceived to benoncompliant, were explored in the context of the nurses'experience of providing care to these patients.Participants were selected by means of a theoreticalsampling technique inviting nurses, who could speak to theexperience of providing care to dialysis patients whosebehavior they perceived as noncompliant, to participate.Data analysis occurred concurrently with data collectionthroughout the research process.In discussing their perceptions of, and responses to,patients seen as noncompliant, the nurse participants talkedabout their perspectives of the patients' illnessexperiences, their beliefs about the dialysis regime, andtheir perspectives of the meaning of compliance andnoncompliance.The findings of this study revealed that nurses'perspectives of the patients' illness experience wereinfluenced by their beliefs about the impact of end stagerenal failure and its treatment on patients' lives. Thenurses who participated in this study talked about theirneed to understand the difficulties and challenges patients'99faced in managing end stage renal failure.The participants viewed the patients' abilities to copewith the illness and life on dialysis as primarilyinfluenced by the patients' life experiences and the copingbehaviors they used in the past to deal with theseexperiences. The nurses' empathized with the patients andwere able to relate similarities in their life experiencesto that of the patients. Nurses' drew from their personaland professional knowledge to gain an understanding of thedifficulties of living with end stage renal failure andconveyed their understanding in discussing theirexpectations to patients in managing their illness.Despite this understanding, certain patient behaviorstriggered responses that were not always reflective ofunderstanding or empathy.The nurses' perspectives of the dialysis regimecentered around their beliefs about the regime and theprocess of tolerating or not tolerating patient illnessmanagement behaviors. Although there was consensus amongthe nurses regarding components of the dialysis regime, theparticipants differed in their perceptions of the relativeimportance of the regime components. The nurses'expectations of patients were grounded in their beliefs thatpatients endangered their lives and inconvenienced orendangered the lives of others by exceeding the restrictionsof the dialysis regime. Finally, the nurses' perceptions of100compliant or noncompliant patient behaviors related to theirperceptions of congruence or incongruence of patients inmeeting the nurses' expectations as to the most effectiveapproach to manage the patients' illness. The discrepancybetween a patient's illness management behavior and thenurse's expectations frequently created dilemmas for nurses.However, one participant perceived that the nephrology teamsometimes inappropriately mislabelled patients asnoncompliant for what she perceived as expressing discontentwhen they had failed to live up to promises they made tothese patients.The process of labelling compliant or noncompliantpatients and judging them as being "good" or "bad", "easy","perfect", or "difficult" was unique to each nurse and canbe seen as influenced by the nurses' sense of empowerment orpowerlessness. Empowerment and powerlessness arose as thetwo central themes of the nurses' experience of providingcare to patients.The nurses felt empowered and experienced satisfactionwhen they perceived themselves as working effectively withpatients, peers, and colleagues within organizationalconstraints. Participants experienced powerlessness whenthey were unable to convince patients to change theirillness management behaviors seen as irresponsible, whenpatients showed a lack of respect for the nurses, and whenthey were unable to influence work place conditions. The101emotional impact of powerlessness caused nurses to feelfrustrated, doubtful, guilty, and/or angry. Moreover, therewas a tendency among the nurses to avoid patients who causednurses to feel powerless.There appeared to be two major sources of empowermentor powerlessness: the nurses' relationships with patientsover time and the working environment. With the first,nurses felt empowered or powerless in their practiceprimarily as a result of perceived positive or perceiveddifficult relationships with patients. Nurses experiencedempowerment as a result of positive nurse-patientrelationships. Features of a positive nurse-patientrelationship consisted of reciprocity between nurses andpatients in sharing the responsibility of managing thepatients' illnesses and mutual respect. Conversely, nursesexperienced powerlessness in their practice as a result ofdifficult nurse-patient relationships that lackedreciprocity. Nurses viewed patients' not takingresponsibility and their lack of mutual respect for nursesas a lack of reciprocity in difficult nurse-patientrelationships.The working environment was the second source thatinfluenced nurses' sense of empowerment or powerlessness intheir practice. Mutual concern and support from peers andcolleagues contributed to nurses' sense of empowerment.However, the participants experienced powerlessness in the102work place as a result of opposing tensions created byescalating demands and restrictions of the work place overwhich the nurses perceived they had no control. Thesetensions impacted on the nurses' perceptions of noncompliantpatient behaviors when those behaviors exacerbated the worksituation. Further, tensions from the work placesignificantly contributed to nurses' labelling patients asdifficult and showing their intolerance for such behaviors.Nurses coped with their sense of powerlessness incontrolling work conditions or influencing patient behaviorsby turning to colleagues for emotional support and directionin care planning. Nurses used humor, vented their feelingsto their peers, and consulted colleagues to alleviatestress, diffuse tension, and bring comfort to themselves andpatients. It was also possible for nurses to reconciletheir feelings of powerlessness by modifying their patientgoals, reevaluating patient approaches, and accepting thelimits of their professional responsibility and involvementin helping patients manage end stage renal failure.ConclusionsSeveral conclusions can be drawn from the findings ofthis study:1. Although compliance is a term used by all of the nurses,it does not have the same meaning for everyone.Furthermore, nurses' definitions of compliance are based ona multitude of interrelated factors.1032. Knowing the patient influences the nurses' perceptions ofcompliance and noncompliance. Knowing the patient alsoenables nurses to work more effectively with him or her.3. While nurses seek to understand and empathize withpatients' difficult life situations, they still cannotaccept some of the behaviors patients use, such as verbalaggression, to express their anger and frustration abouttheir situation.4. Hemodialysis nurses' perceptions of, and responses to,patients whom they perceive as noncompliant change over timeas do their expectations of these patients in managing theirillness.5. Hemodialysis nurses do not necessarily negativelyperceive patient behaviors that are incongruent with theirexpectations. Rather, nurses are tolerant of incongruentpatient behaviors as long as they are not seen as harmingthe patient and allow him or her to "have a life" ondialysis. In addition, nurses' tolerance of incongruentbehaviors related to their affect on other patients and/orstaff in the dialysis unit.6. The discrepancy between a patient's illness managementbehavior and the nurse's expectations frequently createsdilemmas for nurses. One such dilemma is experienced whennurses weigh the patient's right to self-determination andtheir autonomy against the nurses' beliefs about the mosteffective approach to manage end stage renal failure.1047. Nurses' experience powerlessness in their daily practice.Nurses link their sense of powerlessness to both theirrelationships with patients and to organizationalconstraints.8. Powerlessness resulting from difficult nurse-patientrelationships and organizational constraints createstensions and frustrations which have a negative impact onthe way nurses interact with patients.9. Nurses cope with powerlessness by using a variety ofstrategies that give them support.ImplicationsNursing Practice One of the most significant findings of this study isthat the term compliance does not have the same meaning foreveryone. This finding is in keeping with the discrepanciesin the use of the term which the investigator discovered inreviewing the literature. The nurses' descriptions ofcompliance were discussed in relation to patients' wellbeing and ability to have a "normal life". When issues ofpatient safety arose as a result of patients not followingthe dialysis regime, nurses had clear expectations ofpatients to "obey" and abide by the restrictions of thisregime. The prospect of negotiation was clearly notadmissible in these types of patient situations. This non-negotiable coercive attitude towards patient compliance isconsistent with that described by Meichenbaum and Turk105(1987); Barofsky, 1978; Quigley & Giovinco, 1988).Furthermore, the nurses' reluctance to negotiate withpatients can also be seen as assuming that patients areunable to make decisions related to how to most effectivelyand safely manage this life threatening illness. Thisfinding is in keeping with DiMatteo and Friedman's (1982)view which was previously cited in the literature review.Contrary to this perspective of compliance, patientsand nurses were sometimes seen to negotiate the boundariesof patient behaviors in relation to the dialysis regime,provided the patients' behaviors did not jeopardizepatients' lives. This finding reflects Dracup and Meleis's(1982) perspective that compliance is a conscious, mutuallyagreed upon decision on the part of the patient and thenurse. However, the notion of setting boundaries remainsevident in the nurses' expectations of patient behavior evenin this perspective of the meaning of compliance.The nurses who participated in this study spoke ofpatient following medical recommendations as predeterminedfor them by the dialysis regime. As previously mentioned inthe literature review, Barofsky (1978) referred to suchpatient behavior, conforming to health professionalsexpectations, as adherence. Situations where nursesdescribed patients as taking responsibility for occasionallynot following the dialysis regime and promising to followits restrictions can be seen as patients actively106negotiating with nurses. This finding reflects Barofsky's(1978) and Quigley and Giovinco's (1988) notion of alliancewhere patients actively participate in the decision-makingprocess of managing their illnesses.The findings of this study also indicate that nursessometimes perceived patients' noncompliance to be attributedto patients' lack of knowledge or understanding of thetreatment and the possible consequences of not following theregime. Some nurses also spoke of patients' noncompliancein terms of their unwillingness to make lifestyle changes.These findings are consistent with DiMatteo and Friedman's(1982) view of factors that influence patients to deviatefrom the dialysis regime. Other nurses attributed patients'noncompliance as unintentional acts where patients simplycould not remember particular aspects of the dialysis.Dracup and Meleis (1982) refer to this type of patientbehavior as acts of omission. Furthermore, some nursesspoke of situations where patients not only consciouslychose not to follow the dialysis regime but made theirdecisions explicit to the nurses. This finding isconsistent with what Dracup and Meleis (1982) viewed as actsof commission. However, most of the nurses spoke ofpatients voicing their choices as their right to decide howthey live their lives. This perspective conveys a morepositive attitude of acceptance and respect for patients'illness management decisions despite their not following the107nurses' advice. Such a perspective of noncompliance in thisstudy is supported by a recent study (Thorne, 1990) alsopreviously mentioned in the literature review.The nurses' sense of powerlessness was seen to belinked to nurse-patient relationships which nurses perceivedas difficult as a result of a lack of reciprocity both insharing the responsibility to manage patients' illness andmutual respect. Nurses felt unable to influence patients tochange their behaviors that reflected a lack of reciprocity.Embedded within this finding is the implication that nurseswould sometimes like to be able to influence or controlpatient behaviors. This finding is consistent with Edel's(1985) concern of what is implied when nurses label patientsas noncompliant or compliant. However, nurses also spoke ofsituations where they were able to make exceptions forparticular patient behaviors and modify their expectationsof patients. This finding indicates that influencingpatients to follow or to comply with the restrictions of thedialysis regime is not the primary goal of these nurses.The nurses who participated in this study also acknowledgedand respected patients' autonomy and individuality.Therefore, the nurses' goal is to establish behaviors thatare acceptable to both the nurse and the patients, enhancepatients' ability to make the most out of life, and do notjeopardize patients' lives or inconvenience or harm others.Inherent in this goal is the nurses' desire to work108collaboratively with patients. However, one can concludethat nurses would like to influence or control patientbehaviors such that they are consistent with their goal.Therefore, the term compliance, even described in thecontext of collaboration between nurses and patients, stillsuggests domination over patients.Another significant findings of this study is thatknowing the patient influences nurses' perceptions ofcompliance and noncompliance. Hemodialysis nurses'perceptions of, and responses to, hemodialysis patientschange over time as do their expectations of patients'involvement in the management of their illness. Thisfinding has significant implications for the application ofthe nursing process as an effective tool to manage the careof in-hospital maintenance hemodialysis. The notions oftime and knowing the patient as influential factors inhemodialysis nurses' perceptions and expectations ofpatients direct nurses to conduct on-going assessments ofthe physical status and psychosocial needs, beliefs, andvalues of patients. It also directs nurses to validatethese perceptions with the patients.According to O'Brien (1974), validation is the processthrough which nurses not only clarify and confirm theirobservations and feelings about a given patient situationbut also conveys their interest and concern for patients.However, patients may not necessarily "be ready to discuss"109(O'Brien, 1974, p. 83) the issues or concerns as identifiedby the nurse at any given time. Therein lies the indicationfor on-going patient assessments.Finally, the changing perceptions of nurses over timealso direct hemodialysis nurses to integrate new findingsinto the planning and decision-making process of providingcare to hemodialysis patients. The assessment phase of thenursing process is most critical in the care planning of in-hospital maintenance hemodialysis patients. It providescurrent, accurate, and valid information that hemodialysisnurses require to develop and evaluate expectations ofpatients and plan mutually acceptable goals. The nursingprocess should be used in conjunction with a nursing modelthat will direct nurses to gather specific data that wouldfacilitate nurses' "knowing the patient" and the impact ofend stage renal failure on individual patients' lives.^Asa result, nurses would provide more effective nursing careand feel more empowered in their practice.Lubkin (1990) advocates the use of an illnesstrajectory model in conjunction with the nursing process toincrease the effectiveness of caring for chronically illpatients. Lubkin (1990) draws her perception of illnesstrajectory from the research conducted by Glaser and Strauss(1968) and Strauss et al (1985). As a result, Lubkin (1990)proposes that illness trajectory is a concept that focuseson the patients' and caregivers' changing perceptions of the110patient' situation, the impact and patients' responses totheir situation, and the tasks involved in managing theentire course of illness. Nurses could use an illnesstrajectory framework such as this one to guide the interviewprocess during on-going data collection and assessment todetermine the nature of changes over time in hemodialysispatients.To further facilitate the process of "knowing thepatient", nurses need opportunities to learn effectiveinterpersonal skills. However, nurses also need to be givenopportunities to spend time interacting with patients tofurther develop their interpersonal skills and be moreeffective in their interactions with patients. Therefore,administrative support which would enable nurses to spendmore time interacting with patients needs to be consideredin future program planning and development.The nurses in this study emphasize the importance ofknowing the patients as enhancing their ability to workeffectively with them. One of the organizational changesthat could be introduced is a primary approach wherebynurses have the opportunity to repetitively take care of thesame patients. This approach promotes continuity of carewhich can facilitate getting to know patients. Both nursesand patients benefit from establishing a rapport in that itprovides the context where their beliefs, values, feelings,and concerns can be exchanged and validated. This exchange111and validation can further enhance mutual respect andunderstanding and promote collaboration between nurses andpatients to identify and work towards a common goal.However, this could not be successfully accomplished untilissues around anger, related to nurses' feelings ofpowerlessness and the dynamics of providing care tochronically ill patients who themselves are angry, areresolved. The issues of anger will be discussed further inthe section of this chapter entitled Nursing Education.Case presentations of individual patients could provideanother opportunity for all members of the nephrology teamto share information and to identify common problems andmutual goals. Team participation empowers nurses byproviding a broader perspective on patient situations andtheir specific needs which the nurse can incorporate intocare planning for individual patients. The end result ofsuch a collaborative effort is more effective nursing care.One of the participants described the challenges ofproviding care to patients who felt compelled to start andcontinue dialysis because of family pressures. Patientsituations such as these create ethical dilemmas forhemodialysis nurses. Given that hemodialysis nursesfrequently experience ethical dilemmas in their practice,periodically providing them with a forum for dealing withethical issues could enhance their understanding of thesedilemmas and provide guidance in responding more effectively112to them.The notion of patients' illness management is anothersignificant theme in this study. Strauss et al (1984)propose a framework that focuses on the problems of livingwith a chronic illness. One of the problems cited withinthis framework alludes to the notion of patients' illnessmanagement behaviors in terms of managing problems thatresult from having to carrying out prescribed medicalregime. The essence of the Strauss et al (1984) frameworkis that it demonstrates how chronic illness creates problemsthat impact on every aspect of patients' lives. Strauss etal (1984) further proposes that "To begin to develop both anempathy with the ill and some effective ways of thinkingsystematically about their experience" (p.16) healthprofessionals must consider the impact of the problems thatresult from illness and its treatment. In addition,patients' coping strategies, access to family andorganizational support, financial and medical resources, andthe consequences of patients' attempts to handle keyproblems must also be assessed.Administrative Support For Nursing Practice Administrative support for nurses could take the formof providing nurses with opportunities for debriefing orclosure at the end of a shift. These sessions could providepeer support with regularly scheduled meetings where nursescould express their feelings and perceptions of patients as113a result of confrontations or conflicts with patients abouttheir illness management behaviors. Further, thesedebriefing sessions would show institutional support for themental health of nurses, supplementing the informal networksthat nurses have established for themselves. This type ofsupport for nurses would also serve as a recognition ofnurses' shared experiences with patients and provide anopportunity to systematically deal with nurses' emotionalresponses and concerns about any given patient. Similarly,patients could be given some space where they could sharetheir feelings of fear, anger, and frustration amongthemselves and provide a social outlet and opportunities tovalidate their feelings and life situations.The findings of this research demonstrate a need fornurses to be able to recognize responses to powerlessness intheir practice. Nurses may be assisted by knowledge oftheories and models to explain the experience ofpowerlessness for both patients and nurses. Furthermore,nurses should be provided opportunities to learn and developstrategies empower themselves and patients.The nurses who participated in this study also conveytheir sense of powerlessness in the workplace in the contextof being understaffed to meet the growing demands of thedialysis program. The participants perceive that managementhas unrealistic expectations of them yet would hold themaccountable should patients be harmed as a result of114constraints in the workplace. Within the participants'descriptions of their experience of working within theconstraints of the work place is the assumption that theyneed for management to validate their concerns. Theseconcerns include patient safety, fears of potential lawsuits and, uncertainty of having support from managementshould a patient be harmed as a result of an inadequatenurse-patient ratio.The findings of Benner and Wrubel's (1989) studymentioned above, support the idea that nurses can alleviatesome of their fears and concerns through participatorymanagement whereby nurses are empowered to shape theirpractice. Participatory management could consist of a forumwhere hemodialysis nurses and other members of thenephrology team collaborate to identify staff nurses' rolein managing patients' illness and the special needs of thisunique group of patients. Subsequently, the special needsof in-hospital maintenance hemodialysis could be related tomanagement in terms of patient-nurse ratio, length andnumber of consecutive shifts, scheduling of patients, andsafe and effective nursing.Nursing Education The results of this study indicating that hemodialysisnurses' perceptions of, and responses to, hemodialysispatients change over time has implications for nursingeducation. As previously mentioned in the literature115review, Wolfsen's study (1989) indicates that acute carenurses generally perceive hemodialysis patients as beingdifficult. However, Wolfsen (1989) did not explore if theseparticipants' positive or negative perceptions ofhemodialysis patients changed over time. Lubkin (1990)states that acute care health professionals' predominantlynegative perceptions of and attitudes towards chronicallyill patients may be due to the fact that they see thepatients at their worst, for only brief and intermittentperiods of time. The results of this study suggest that thelack of continuity in their interactions with patients mayhamper the health professionals' ability to gain insightinto the life experience of patients in coping with a lifethreatening chronic illness. As a result of this lack ofinsight, health professionals may in fact draw falseconclusions about the reasons for patient behaviors whichthey perceive as being difficult. Consequently, they mayalso be unable to direct their attention to the cause of thebehavior which they perceive as undesirable and hinderingtheir ability to work effectively with chronically illpatients.Better understanding of life threatening chronicallyill patients could result if undergraduate and graduatecurricula provided comprehensive programs whereby studentsgained knowledge of living with chronic illness, emotionalresponses to chronic illness, and related ethical dilemmas116in addition to practical clinical experience with suchpatients. Nursing students also need to be provided withopportunities to reflect and discuss the challenges anddilemmas they experience in caring for such patients. Theselearning opportunities could help prepare nurses for theclinical realities of nursing patients with life threateningchronic diseases such as end stage renal failure.Moreover, nurses have to understand that dialysispatients not only have a life threatening chronic illnessbut also that these patients have so many constraints ontheir lives that create a certain kind of tension in theirillness experience. To be effective in their interactionswith patients and to capture the patient's experience ofliving with the constraints of the dialysis regime, nursesneed highly developed interpersonal skills. The use of suchskills enables nurses not only to assess patients but alsoto convey warmth, respect, empathy, and sympathy and promotemutual problem solving (Smith, 1986). As previouslymentioned in the Implications for Nursing Practice sectionof this chapter, it can be concluded that nurses feel a needto control or influence patients' illness managementbehaviors, even in the context of collaborative nurse-patient relationships. Nurses' perceived inability toinfluence or control patients' behaviors was also describedearlier as contributing to nurses' sense of powerlessness.A better understanding of patients' responses to living with117a life threatening illness such as end stage renal failuremay assist nurses to relinquish the need to dominate theirrelationships with such patients. Having acquired suchinsight into patients' responses, greater trust in patients'decisions to manage their illnesses and patients'willingness to negotiate and take added responsibility mayoccur.The results of this study also indicate that thenurses' feelings of powerlessness in their daily practicehas an emotional impact on the nurses who participated. Theparticipants' feelings of frustration and anger have themost significant impact on their relationships withpatients. Most frequently, these nurses cope with theirfeelings of anger and frustration by avoiding patients withwhom they cannot work effectively and whom they perceive asa source of powerlessness in their practice. The danger inavoiding patients is that it increases barriers tocommunication whereby problems or concerns never getresolved. More importantly, nurses who avoid patients mightinadvertently miss a subtle cue which could have indicatedthe presence of a potentially devastating patient problemthat could have been prevented. Patient avoidance is indirect conflict with the process of working together towardsmutually desirable goals such as maintaining a normal lifeor making the most out of life. Therefore, nurses needopportunities to learn about the dynamics of anger to gain118both an understanding of their experience with anger in thework place and an insight into the consequences of how theymanage their own feelings of anger and frustration.Moreover, nurses need to learn skills that will empower themto constructively deal with anger such that patient care isnot compromised.Nurses in this setting are dealing with some patientswho are also angry. The nurses perceive that the manner inwhich patients express their anger is often unacceptable.Although the nurses who participated in this study interpretpatients' verbal aggression as a reaction to their illnessand try not to perceive it as a personal affront, thesenurses also respond to such patient behaviors. The nurses'affective and behavioral responses to patient's verbalaggression create a dilemma for the nurses because theystill attempt to value and maintain respect for patients whobehave in an unacceptable manner. Support to assist nurseswith such patients could also be in the form of educationabout the dynamics of anger. Such educational sessionswould help nurses gain a greater understanding of patients'expression of anger as a healthy response to illness.Furthermore, these educational sessions would also helpnurses to develop skills to effectively respond to patients'expression of anger. As a result, nurses would have theopportunity to learn to validate the patients' feelings byacknowledging the affective message. In addition, the119nurses could learn to deal with the separate issue of theunacceptable manner in which patients express their anger.The educational sessions could also provide opportunitiesfor nurses to learn about more constructive alternatives forpatients to express their anger. Nurses will then be ableto develop their relationships with patients and get to knowthem as barriers to communication caused by feelings ofanger and frustration are diminished. Furthermore, nursescould draw from their newly acquired knowledge of anger tocollaboratively develop a systematic approach to deal withpatients' verbal aggression. This systematic approach couldfacilitate a more consistent response to verbally aggressivepatients. Consequently, nurses may feel empowered toprovide more effective care to patients who exhibit suchbehavior.The findings of this study indicate a need for ongoingcontinuing education for nurses working with in-hospitalmaintenance hemodialysis primarily in the areas ofpsychosocial aspects of patient care and ethical issues ofhealth delivery. Major psychosocial concepts related topatients' long term chronic illness experience such as theillness trajectory, role theory, and change theory could bealso be incorporated into learning modules or take the formof educational sessions.Given the economic climate, undergraduate and graduatenursing programs as well as continuing education for nurses120should integrate knowledge of the current status and growingdemands of the health care system. These sources ofeducation for nurses also need to create a forum in whichnurses can discuss the challenges and difficulties ofproviding care in such a context. Salient to the healthprofessionals' awareness of the impact of the health caresystem is their ability to communicate with patients,families, and other health professionals to work effectivelywithin this context. According to Smith (1986), "theresponsibility of encouraging this interchange of ideas,values and skills is a task for which the nurse isaccountable" (p. 20). Therefore, it is essential thatstudents develop a sound understanding of the process ofcommunication and learn the skills that facilitatecommunication in their relationships with patients,families, and health professionals involved in the care ofhemodialysis patients.In keeping with the theme of economic restraints, itspotential negative impact on health care, and ethical issuesthat arise as a result of these economic restraints, nursesalso need opportunities to learn knowledge and skills thatwould enable them to effectively resolve ethical dilemmas intheir practice.^Therefore, educational sessions should beprepared to fulfil this educational need of nurses byfocusing on principles of ethical dilemmas, the experienceof ethical distress in the clinical setting, and strategies121commonly used to effectively deal with concerns oruncomfortable feelings experienced with ethical distress.Just as educators in the graduate and undergraduatecurricula act as role models for nursing students, clinicalnurse specialists in nephrology provide role modelling andongoing education to staff. These means of continuingeducation may empower hemodialysis nurses to effectivelydeal with the challenges of caring for end stage renalfailure patients.Nursing Research The investigator used phenomenology to explore theunique lived experience of hemodialysis nurses' perceptionsof patients receiving in-hospital maintenance hemodialysis.This research method allowed the investigator to describehow these perceptions affected hemodialysis nurses'responses to patient behavior which they perceived to benoncompliant. While the group of hemodialysis nursesinterviewed for this study is likely to be comparable toother hemodialysis nurses working with in-hospitalmaintenance hemodialysis patients, the findings of thisstudy cannot be assumed to be representative of the generalpopulation of hemodialysis nurses working in similarhemodialysis settings. Rather, a generalization of thisstudy's findings to other hemodialysis nurses in similarhemodialysis settings would only be appropriate if similarfindings were discovered from further qualitative or122quantitative research. For instance, a survey could beconducted of all hemodialysis nurses working in a similarcontext throughout the greater Vancouver area to establishto what extent other nurses experience empowerment andpowerlessness in their relationship with hemodialysispatients and in the workplace.Although all of the implications previously mentionedin the first two sections of this chapter are amenable tofurther research, the investigator has identified severalspecific questions that arise from the analysis anddiscussion of the data:1. What are the effects on the nurse-patient relationshipwhen nurses overtly show their feelings of anger andfrustration towards patients?2. What are the effects of debriefing or closure on nurse-patient relationships?3. Does the nurses' acquisition of theoretical knowledgerelated to living with a terminal chronic illness make adifference to the process of providing care to in-hospital maintenance hemodialysis patients?4. Is the experience of providing assistance and guidance toself-care hemodialysis patients different from providingcare to in-hospital maintenance hemodialysis patients?5. Does reciprocity in showing care and appreciation make adifference in the patients' and the nurses' perception oftheir relationship with one another?1236. Is the experience of providing care to in-hospitalmaintenance hemodialysis different for an individualhemodialysis nurse after 1 year, 5 years, 10 years, 15years, 20 years, and 25 years in the same setting?In closing these recommendations for further research,the findings of this study indicate a need to conductresearch on the ethics of providing nursing care to patientswho make an informed decision not to follow the advice ofhealth professionals but to continue with dialysis. Such astudy would be particularly timely in light of theincreasing demand for dialysis and the economic restraintsof the health care system. The Canadian Nurses Association(1991) supports the need for research in relation toproviding nursing care to patients who wish to live at risk:"The nurse does more than respond to the requests ofclients; the nurse accepts an affirmative obligation withinthe context of health care to aid clients in theirexpression of needs and values, including their right tolive at risk" (p. 2).In conclusion, this study has examined the concept ofnoncompliance as perceived and responded to by hemodialysisnurses caring for in-hospital maintenance hemodialysispatients. This study has demonstrated that hemodialysisnurses' perceptions of noncompliant patient behaviors cannotbe viewed in isolation of the nurses' experience ofproviding care to these patients. 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Inpartial fulfilment of my graduate education, I would like toconduct my nursing research study at your hospital.This study is entitled Nurses' Perceptions of and Responses to In-hospital Maintenance Hemodialysis Patients whom Nurses Perceive to be Noncompliant. Therefore, thepurpose of the study is to investigate and describe hownurses perceive noncompliance of patients receiving in-hospital maintenance hemodialysis, and how nurses'perceptions of noncompliance impact their responses to suchpatient behavior.Four to five hemodialysis nurses will be selected andinterviewed to obtain this information. The selectedparticipants will meet the following criteria: 1. be aregistered nurse, employed for a minimum of 6 months in yourunit, 2. be fluent in English, 3. be interested in speakingto the topic, and 4. be willing to have 2-3 tape-recordedinterviews, each one lasting 1-1.5 hours, at a mutuallyagreed location.The participants will be informed that their identitywill be kept strictly confidential by assigning each one acode name. Participation is voluntary. Participants mayrefuse to answer any question, withdraw at any time, tochoose not to participate in this study without penalty orrisk to their employment status.I am enclosing a copy of my research proposal and eightcopies of St. Paul's Research Application Form as you haverequested.Thank you for considering my application.Sincerely,Denise Gaudet, RN134Appendix BLETTER TO HEAD NURSEDear ^My name is Denise Gaudet. I am a graduate student inthe Masters of Science in Nursing program at the Universityof British Columbia School of Nursing. In partialfulfilment of my graduate education, I am conducting anursing research study entitled, Nurses' Perceptions of and Responses to In-hospital Maintenance Hemodialysis Patients whom Nurses Perceive as Noncompliant.The purpose of this study is to investigate anddescribe how nurses perceive noncompliance of patientsreceiving in-hospital maintenance hemodialysis, and hownurses' perceptions of noncompliance impact their responsesto such patient behavior. I would like your assistance torecruit participants for this study. Four to fivehemodialysis nurses from your unit will be selected andinterviewed to obtain this information. The selectedparticipants will meet the following criteria: 1. be aregistered nurse, employed for a minimum of 6 months in yourunit, 2. be fluent in English, 3. be interested in speakingto the topic, and 4. be willing to have 2-3 tape-recordedinterviews, each one lasting 1-1.5 hours, at a mutuallyagreed location.The participants will be informed that their identitywill be kept strictly confidential by assigning a code nameto each one. Participation is voluntary. Participants mayrefuse to answer any question, withdraw at any time, orchoose not to participate in this study without penalty orrisk to their employment status. Written consent will beobtained from the participants prior to taking part in thestudy.I will provide you with a letter of information whichyou could distribute to the nurses on your unit. Nurses whomeet the preceding criteria and wish to participate shouldbe encouraged to identify themselves to the researcher. Theresearcher will then set a preliminary appointment todiscuss any questions or possible concerns which potentialparticipants may have about the study. I would appreciateyour speaking to the nursing staff about the study and itsselection criteria. Please contact me or my faculty advisorif you have any further questions about the study.Sincerely yours,Denise Gaudet, RN BNPhone: XXXXDr. Anna Marie Hughes, RN Ed.D.Assistant Professor, Faculty AdvisorUBC School of NursingPhone: XXXX135Appendix CINFORMATION LETTER TO PARTICIPANTSResearch Project: Nurses' Perceptions of and Responses toHemodialysis Patients Whom Nurses Perceive to beNoncompliantTo ^My name is Denise Gaudet. I am a Registered Nursecompleting my master's degree in nursing at the University ofBritish Columbia.The study which I am conducting examines how hemodialysisnurses perceive noncompliant behavior of patients receivingin-hospital chronic hemodialysis. This study also looks at howhemodialysis nurses perceive they respond to patients whosebehavior nurses identify to be noncompliant. A review of theliterature lacks information about nurses' perceptions ofnoncompliant behavior of hemodialysis patients and nurses'responses to such behavior. The descriptions of your experienceswith such patients can contribute to developing a betterunderstanding of this phenomenon. PLEASE UNDERSTAND THAT YOU AREUNDER NO OBLIGATION TO PARTICIPATE IN THIS RESEARCH AND THAT YOURREFUSAL TO PARTICIPATE WILL NOT AFFECT YOUR EMPLOYMENT STATUS.Participants will be interviewed 2-3 times, at theirconvenience in a mutually agreed upon location. Each interviewwill take approximately one hour. During these interviews, Iwill tape-record the two of us talking about your thoughts,feelings, and experiences with hemodialysis patients whom youperceive to be noncompliant. An example of a question that Imight ask you is: When providing care to patients on chronichemodialysis, can you describe concerns you have had aboutpatients' difficulty in following the treatment regimen? You mayrefuse to answer any question or request that any section of thetaped interview be erased. I will be considerate of yourthoughts and feelings throughout the interviews.Your identity will be kept strictly confidential, and I willuse code names on all documents formulated from the interviews.Any presentation or publication of the data from the study willnot identify you in any way. The accidental mention of names orother identifying information will also be erased.PLEASE NOTE THAT YOU MAY ALSO WITHDRAW FROM PARTICIPATING INMY RESEARCH AT ANY TIME WITHOUT PENALTY. Please call me if youwish to participate in this study. You may also call me or myfaculty advisor if you have further questions before agreeing toparticipate.Thank you,Denise Gaudet, RN^ Phone: XXXXDr. Anna Marie Hughes, RN, Ed.D.,Assistant Professor,School of Nursing, UBC^ Phone: XXXX136Appendix DPARTICIPANT CONSENT FORMTitle of Research Project:Nurses' Perceptions of and Responses to Hemodialysis Patients Whom Nurses Perceive to be Noncompliant Upon consenting to participate in Denise Gaudet'sresearch project, I understand that:1. I am under no obligation to participate in this research.2. I will be interviewed 2-3 times, at my convenience in amutually agreed upon location. Each interview will takeapproximately one hour.3. I will allow all interviews with the researcher to beaudiotaped.4. I may withdraw from the research project or refuse toanswer any questions at any time without penalty.5. My identity will be kept confidential.6. I will receive no monetary compensation for participatingin this research project.7. Data resulting from this study may be used in professionalpublications and/or presentations.I hereby give my consent to participate in DeniseGaudet's research for her master's thesis. I acknowledge that Ihave a copy of the letter of information and consent form, andthat the study has been adequately explained to me.Signed ^Witness DateDenise Gaudet, RN,MSN student,UBC School of NursingDr. Anna Marie Hughes, RN, Ed.D.,Assistant Professor,Faculty Advisor,UBC School of Nursing137Appendix ETRIGGER QUESTIONSI. Have you ever had concerns about a patient's ability tofollow through on his or her prescribed treatment regimen?2. Can you think of an example of someone that you have workedwith that was having difficulty following treatmentrecommendations?3. When talking to hemodialysis patients, what is it like todiscuss discrepancies in their behavior as these relate tothe prescribed treatment regimen?4. What factors do you think influence patients' decision tofollow a prescribed treatment regimen?5. Have there been any instances where you felt that you and thepatient have not agreed upon what's important for them to doto take care of themselves? Can you tell me about thatsituation?6. In retrospect, would you have changed the way you approachedthis situation?

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