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Perceptions of uncertainty in family members of adult intensive care unit patients Miller, Pamela Joan 1993

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PERCEPTIONS OP UNCERTAINTY IN FAMILY MEMBERSOF ADULT INTENSIVE CARE UNIT PATIENTSByPAMELA JOAN MILLERB.S.N., The University of British Columbia, 1975A THESIS SUBMITTED IN PARTIAL FULFILMENT OFTHE REQUIRMENTS FOR THE DEGREE OPMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIES(School of Nursing)We accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIADecember, 1993Pamela Joan Miller, 1993In 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_______________The University of Briti1 ColumbiaVancouver, CanadaDate ,DE-6 (2/88)11AbstractThis descriptive correlational study was designedto determine the level of uncertainty perceived byfamily members of adult ICU patients. The studyinvestigated the relationship between the perceivedlevel of uncertainty and illness severity. Inaddition, the study sought to explore family members’subjective perceptions of factors which were related touncertainty during the ICU experience. The Mishel(1988) theory of Uncertainty in Illness guided thisstudy.A convenience sample of 30 family members ofcritically ill ICU patients completed the FamilyMember Version of the Parents Perception of Uncertaintyin Illness Scale (PPUS—FM), the Visual Analogue Scale(VAS) for illness severity, and a demographicinformation sheet. In addition, 12 of the 30 familymembers participated in a semi—structured interview.The findings demonstrated wide variability inthe family members’ perceived level of uncertainty.However, the majority of family members of ICU patientsperceived moderately high levels of uncertainty. Thenature of the uncertainty experienced appears to beprimarily generated in response to ambiguity andunpredictability of the situation.iiiThe relationship between perceived uncertainty andillness severity was not statistically significant.Mishel’s (1988) theory of Uncertainty in Illnesssupports the possibility that this finding may be afunction of the family member’s appraisal of theillness situation. Additional negative correlations,although not statistically significant, were foundbetween the uncertainty factors of lack of clarity andlack of information and severity of illness. Thissuggests family members’ who receive less informationmay have a more positive, although not necessarilyaccurate, appraisal of the illness situation.The guided interviews revealed family membersof ICU patients perceive similar uncertainties duringthe ICU experience. Uncertainty was related to theunpredictable illness or treatment situation, theunfamiliar environment and system of care and changesin family member functioning. The family memberfunctioning theme is not accounted for in the Mishel(1988) framework, and appears to be primarily relatedto changing roles. Although a number of positivebeliefs were used by family members to promote ahopeful outlook, responses indicated that most familymembers’ appraisal of uncertainty fluctuated between adanger and an opportunity appraisal.ivTable of Contents1.bstract. iiTable of Contents.ivI.,ist of Tables \ri jI., ist of Figures. viiiAc]criowledgements ixDedication xCHAPTER ONE: INTRODUCTIONBackground to the Problem 1Statement of the Problem 3Purposes of the Study 4Research Questions 4Definition of Terms 5Significance of the Research 6Assumptioris 6Theoretical Framework 7Antecedents of Uncertainty 9Appraisal 12Coping and Adaptation 14SUIn!flary’ 15CHAPTER TWO: REVIEW OF THE LITERATUREIntroduction . . . . . 17Historical Perspective 18The Needs of Family Members of ICU Patients 21Studies using the CCNFI 22Qualitative Studies of Needs 24PerceptionofUncertainty 26Uncertainty as a StressorinthelCUExperience 28Arnbiguity 29Lack of Clarity 32Lackoflnformation 33Unpredictability 34Studies of Uncertainty in FamilyMembersoflCUPatients 35Background about the MUIS 36Studies Using the Family MemberVersion of the MUIS 39Studies of Family Members’Perceptions of Uncertainty 45Uncertainty and Perceived Illness Severity 47Summary of the Literature Review 49VCHAPTER THREE: METHODSIntroduct ion 53Research Design 53Setting 53Sample 54Data Collection Instruments 56Family Member’s Uncertaintyin Illness Scale (PPUS—FM) 57Visual Analogue Scale (VAS) 59Demographic Information Sheet 60InterviewGuide 61Ethical Considerations 62Data Collection Procedure 64Data Analysis 71Summary 73CHAPTER FOUR: PRESENTATION OF THE FINDINGSIntroduction 74Characteristics of the Sample 74Demographic Characteristics ofthe Family Members 74Demographic Characteristics ofthe ICU Patients 78Findings 80Research Question 1: Regarding Perceived Levelof Uncertainty of Family Members 80Research Question 2: Regarding the RelationshipBetween Uncertainty and Illness Severity 82Additional Findings 83Research Question 3: Regarding Family Members’Perceptions of Factors Related to UncertaintyDuring the ICU Experience 85Illness/Treatment Situation 86The Environment and System of Care 96Family Member Functioning 105SuTninary- 110CHAPTER FIVE: DISCUSSION OF THE FINDINGSIntroduction 111Characteristics of the Sample 111The Perceived Level of Uncertainty 113Total Uncertainty Scores 114Four Factor Uncertainty Scores 121DiscussionofthePPUS—FM 121Uncertainty and Illness Severity 123Family Members’ Perceptions of Uncertainty 124Family Members’ Appraisal of Uncertainty 133Summary 136viCHAPTER SIX: SUMMARY, CONCLUSIONS AND IMPLICATIONSIntroduction 137SuinmaryoftheStudy 137Limitations 144Conclusions 145Impiications 14 7NursingPractice 147Nursing Education 155Nursing Research 155Nursing Theory 159Summary 160References 161AppendicesA: Mishel Uncertainty in Illness ScaleFamily Member Form 168B. Visual Analogue Scale - Perception ofIllnessSeverity 175C. Demographic Information Sheet 177D.InterviewGuide 180E. Protocol for Initial Contact ofFamily Members 182F. Information Letter for Family Members 184G . Consent Form 186H. Information Letter for Head Nurse!Assistant Head Nurse 189I. Information Letter for Medical Director 191J. Uncertainties Perceived ByFamily Members 193viiList of TablesTable PageI Family Members’ Relationship to theICU Patients 75II Occupation of the Family Members 76III Education Level of the Family Members 76IV Other Characteristics of the FamilyMembers 77V Numbers of Days in the ICU at Time ofData Collection 78VI Primary Reason for Admission to the ICU 79VII Total Uncertainty Scores for FamilyMembers 81VIII PPUS—FM Factor and Item Means 81IX Family Members’ Perceptions ofIllness Severity 82X Correlations of Total Uncertainty Scores,Uncertainty Factor Scores and OtherDemographic Variables 84XI Themes and Factors Related to FamilyMembers’ Perceptions of Uncertainty 87viiiList of FiguresFigures Page1 Theoretical Framework for Uncertaintyin Illness (Mishel, 1988) 8ixAcknowledgementsI would like to express my gratitude to themembers of my thesis committee, Dr. Anna Marie Hughesand Dr. Carol Jillings. Their enthusiasm, guidanceand encouragement were invaluable to the completion ofthis challenging project. I would also like to thankGloria Joachim for her thoughtful critique of theresearch proposal and the completed manuscript.Special thanks are due to the Assistant HeadNurses and Head Nurses at both study hospitals who sogenerously gave of their time and energy to assist inthe recruitment of family members for the study. Theirdedication to this project was truly overwhelming.I also wish to extend my appreciation to myfamily, friends and colleagues who continually providedme with encouragement, support and ideas. Thank you toDr. Chris Bradley and Roberta Swanson for their helpfulsuggestions and assistance in setting up my data files.A special thanks to Will, Maureen and Sarah, whosesupport and understanding helped me to complete what,at times, seemed an insurmountable task.Finally, I am indebted to the family members ofICU patients who shared their experiences with me.Without them, this study would not have been possible.xDedicationI dedicate this manuscipt to my parents, Telford andJoan, whose love and support have given me the strengthto complete whatever I have set out to do in life.1CHAPTER ONEBackground to the ProblemLife—threatening illness requiring admission to anintensive care unit (ICU) is usually a highly stressfulevent replete with uncertainty for the hospitalizedindividual and his or her family member (Artinian,1991; Breu & Dracup, 1978; Daley, 1984; Hilton, 1992;Leske, 1986; McDonald, 1992; Moos & Tsu, 1977). Fewevents in the critical care illness experience arerecognizable or familiar. In addition, critical illnessis fraught with set-backs and new complications whichmay magnify the uncertainty which is experienced. Anumber of research studies conducted in a variety ofhospital and community settings have demonstrated thatunresolved uncertainty can result in emotional distressor anxiety for both the ill individual and his or herfamily members (Christman, McConnell, Pfeiffer,Webster, Schmitt & Ries, 1988; Mintun, 1984; Mishel,1981, 1984; Mishel, Hostetter, King, & Graham, 1984;Mishel & Braden, 1988; Webster & Christman, 1988).Several studies have also supported a significantassociation between uncertainty and poor adaptation byindividuals who are ill (Christman et al., 1988; Ford,1988; Mishel, 1984; Simurda, 1988).Nurses have begun to recognize the importance ofsupporting families to cope with the critical illness2of a family member. Family members who are unable tocope with the uncertainty associated with criticalillness may have an adverse effect on the patient’semotional state and ultimate recovery (Doerr & Jones,1979; Gardner & Stewart, 1978; Halm, 1990).Furthermore, family members who experience unresolveduncertainty and anxiety are often unable to providesupport for the patient, and in addition may be unableto support each other (O’Keeffe & Gilliss, 1988; Rasie,1980). A better understanding of family members’perceptions of uncertainty would provide an essentialbasis upon which nurses could begin to plan effectivenursing interventions for family members of ICUpatients.The topic of uncertainty is frequently alluded toin the critical care nursing literature (Burke &Nagle, 1993; Caine, 1989; Cozac, 1985; FitzGerald,1990; Gardner & Stewart, 1978; Mirr, 1991; Rasie,1980). However, the emphasis has been on documentingthe needs and stressors experienced by family membersof critically ill patients (Breu & Dracup, 1978; Leske,1986; Mathis, 1984; Miles, Funk & Kasper, 1991; Molter,1979; Potter, 1979; Stillwell, 1984). In fact, muchattention has been focused on a single area ofresearch, namely family needs. Family needs researchsuggests that uncertainty is a major variable which3influences the needs of family members of ICUpatients. In addition, numerous observations made byhealth care professionals suggest that uncertainty maybe a significant stressor for family members.Minimal attention has been directed todetermining family members’ perceptions of theuncertainty experienced in the ICU. Very few studieshave been conducted whose primary purpose was toinvestigate uncertainty in family members of ICUpatients. The studies which have been done provideinconsistent findings about the degree of uncertaintywhich may be experienced. In addition, it is difficultto glean specific information from these studiesabout family members’ perceptions of factors which arerelated to uncertainty during the ICU experience.Statement of the ProblemIt is recognized that the experience of having afamily member in the ICU is one potentially full ofuncertainty and that uncertainty can have a negativeimpact on the family member and the patient. Yet,there has been little systematic investigation of theuncertainty experienced by family members of ICUpatients. It is not clear what level of uncertaintyis experienced by family members. It is not known ifthe family member’s perception of illness severityinfluences the perceived level of uncertainty. Inaddition, exploration of family members’ perceptions4of factors which may be related to uncertaintyduring the ICU experience have received only minimalconsideration.PurDoses of the StudyThe purposes of this study were to:1) determine the level of uncertainty experienced byfamily members during the first week of theirrelative’s admission to the ICU;2) investigate the relationship of perceived levelof illness severity to the perceived level ofuncertainty;3) explore the family member’s perceptions offactors related to uncertainty during the experienceof having a critically ill relative in the ICU.Research QuestionsThis study was designed to answer the followingresearch questions for family members of critically illpatients in the ICU:1. What is the perceived level of uncertainty?2. What is the relationship between perceived level ofuncertainty and the perceived level of illnessseverity?3. What are the perceptions of factors related touncertainty specific to the ICU experience?5Definition of TermsFamily Member: Any relative, 19 years or older who hasvisited the bedside of the critically ill patient atleast one time, and is identified by health careprofessionals as having a significant relationship withthe patient. Only one family member per patient wasselected for the study.Critically Ill Patient: Any individual who has beenadmitted to the general medical-surgical ICU. Thepatient must have been in the ICU at least 48 hours andno more than 7 days.Intensive Care Unit: A specialized unit within thehospital which is structured to care for individualsexperiencing life-threatening physiological crises.These units will include general medical and surgicalintensive care units which care for adult patients.Perceived Uncertainty: The cognitive state occurringbecause of an inability to determine the meaning of anevent as measured by the Family Member version of theParents’ Perception Uncertainty In Illness Scale (PPUSFM).Perceived Illness Severity: The family member’sestimate of the seriousness of the critically illpatient’s illness as measured at the time of theinterview by the Visual Analogue Scale (VAS).6Significance of the ResearchExploration of family members’ perceptions ofuncertainty has provided information which increasedunderstanding of this experience, and which can becommunicated to nurses and other health careprofessionals. The identification of specific factorswhich are related to uncertainty during the ICUexperience may help nurses and other health careprofessionals to design and implement interventionswhich assist family members to cope with theuncertainty which is prevalent in the ICU experience.In turn, this has potential for a positive impact onthe ICU patient’s recovery.AssumptionsFor the purposes of this study the followingassumptions were made:1. critically ill patients admitted to the icu presentsituations in which uncertainty may be experiencedby family members;2. Subjects will respond honestly to the scales andsemi—structured interview guide used in the study.Theoretical FrameworkThe theoretical framework which will provide thedirection for this study is the nursing theory ofUncertainty in Illness as developed by Mishel (1988).This theory evolved from Lazarus’ and Folkmans’ (1984)theory of Stress and Coping, and Moos’ (1977) theory of7Coping with Illness. Mishel (1981) states uncertaintyis one of the conditions which will produce a stressresponse in physical illness.Mishel’s theory has evolved from a large numberof studies designed to develop and validate the MishelUncertainty In Illness Scale (MUIS) in a number ofdifferent clinical populations. These studies haveprimarily focused on the individual’s perception ofuncertainty in illness. There is also a small, butgrowing body of nursing research which has investigatedthe uncertainty perceived by parents and family membersabout another’s acute or chronic illness using theParental Perception of Uncertainty in Illness Scales(PPUS) or the family member version of the ParentalPerception of Uncertainty in Illness Scales (PPUS-FM).Mishel’s theory, as displayed in Figure 1.,describes three variables which are antecedents ofuncertainty, and explains the relationship betweenuncertainty, appraisal and coping. The threeantecedent variables are stimuli frame, cognitivecapacity, and structure providers. These variablesinfluence the information processed by the familymember, and ultimately shape the degree of uncertaintywhich is perceived in response to the patient’sillness—treatment situation. Uncertainty evolves whenthe family member lacks sufficient information or cuesto adequately appraise the situation.Figure1.MisheltsModelofPerceivedUncertaintyinIllness(1988)AdaptedFrom:Mishel,M.H.(1988).UncertaintyinIllness.JournalofNursingScholarship,(4),pg.226.COPINGCOPINGMOBILIZINGSTRATEGIESAFFECT-CONTROLSTRATEGIES(+)ADAPTATIONANTECEDENTVARIABLESAPPRAISALSTIMULIFRAMESymptompatternEventfamiliarityEventcongruency(-)>COGNITIVECAPACITIESSTRUCTUREPROVIDERSEducation(+)0,9Uncertainty is a neutral experience untilappraisal occurs. Uncertainty is appraised as a dangeror an opportunity utilizing the processes of inferenceand illusion. Following appraisal, coping strategiesare implemented to manage the uncertainty and influenceadaptation.Antecedents of UncertaintyThe major antecedent variable, stimuli frame,refers to the form, composition and structure of thestimuli which are processed in an effort to develop amental picture of the illness event. According toMishel, uncertainty occurs when a clear cognitiveapppraisal cannot be achieved related to the unclearor ill-defined nature of the stimuli. The stimuliframe has three components: symptom pattern, eventfamiliarity, and event congruence.The first component, symptom pattern, refers tothe extent to which symptoms are present in a reliable,consistent pattern. A variable symptom pattern, or aninability to distinguish between disease and treatmentsymptoms creates an ambiguous situation where thefamily member has difficulty making sense of thesymptoms.The second component, event familiarity, refers tothe extent to which events within the health careenvironment are familiar or recognizable in relation topast experience. The intensive care environment is10novel and complex related to the extensive use ofcomplex technology and frequent diagnostic tests.Treatments and procedures are ever—changing making itdifficult for family members to establish a familiarframe of reference.The final component of the stimuli frame is thatof event congruence. Event congruence refers to thestability or consistency between what is expected andwhat is experienced in illness. Life—threateningillness is often characterized by setbacks or newcomplications which may increase the uncertaintyperceived by the family member of the critically illpatient. An example of event incongruence occurs whenthe critically ill patient’s unstable conditioncontinues to deteriorate, despite continuing orescalating treatment, creating an incongruence betweenthe expected recovery and the actual deteriorationwhich occurs. Event incongruence can also occur whenthe timing of an illness event is not synchronous withusual events in the life cycle (Lazarus & Folkman,1984).The individual’s cognitive capacity and structureproviders influence the way in which the threecomponents of the stimuli frame are appraised (seeFigure 1). Cognitive capacity refers to the“information—processing capabilities” of the familymember (Mishel, 1988, p. 225). Mishel indicates11information-processing capabilities may be impeded bythe presence of stress, fatigue, pain, unclear orinsufficient information, confusion or medications. Forexample, the family member may have difficultyaccurately processing information related to shock anddisbelief, extreme stress or fatigue, or the sheersensory overload of the complex, technologicalenvironment.Structure providers refers to the “resourcesavailable to assist the person in the interpretation ofthe stimuli frame” (Mishel, 1988, p. 225). Structureproviders help the family member make sense of theunpredictable symptom pattern, unfamiliar events, andincongruencies which result when that which is expectedis in variance with that which actually occurs. Mishel(1988) identifies structure providers as credibleauthority, social support, and education.Credible authority “refers to the degree of trustand confidence patients have in health care providers”(Mishel, 1988, p. 228). Health care providers candecrease uncertainty by providing information aboutsymptom patterns, the expected progression of treatmentand illness and the unfamiliar health care systemin a consistent and reliable manner.Social support provides reassurance that someoneis there to provide assistance related to financial,emotional or practical concerns thereby reducing the12uncertainty that arises secondary to an unpredictablefuture (Lazarus & Folkman, 1984). Mishel (1988) alsoindicates that social support can come from otherindividuals who have been or are going through asimilar illness experience. Mishel indicates thesharing of information about symptom patterns ortreatment experiences can reduce uncertainty by helpingindividuals to make sense of illness or treatmentevents and to formulate plans of action.In addition to the structure providers of credibleauthority and social support, the individual’s level ofeducation also assists to interpret the stimuli frame(Mishel, 1988). Studies have shown that individualswith lower levels of education have been shown to havehigher levels of uncertainty which may be relatedto increased difficulty in making sense of the healthcare system and complex medical terminology (Christmanet al., 1988; Mishel 1981, 1984).AppraisalMishel indicates that stimuli which are complex,unpredictable, unfamiliar or ambiguous result inuncertainty related to the inability to accuratelyrecognize and give meaning stimuli. The presence ofuncertainty impedes the appraisal process (Lazarus &Folkman, 1984; Mishel, 1988). When the uncertain eventlacks clear form or structure this paves the way formultiple, diverse interpretations. Mishel states13that appraisal in an uncertain situation involveseither the process of illusion or inference (SeeFigure 1).Inference refers to the evaluation of uncertaintyin accordance with past experience. According toMishel, it is mediated by personal commitments andbeliefs, general knowledge and experience andcontextual cues. If the inferences are viewed aspositive, then uncertainty will be appraised as anopportunity. If the inferences are viewed asthreatening, the uncertainty will be appraised as adanger. Uncertainty in critical illness is likely tobe appraised as a danger if the family member is unableto obtain a clear perception of what will occur.Illusion is a process whereby beliefs aredeveloped which are generally positive. Ambiguity,which is an integral part of uncertainty, fosters theconstruction of positive beliefs or illusions, whichallow uncertain events to be appraised as positive oran opportunity. This illusion is valuable in helpingfamily members maintain hope in situations which seemhopeless, and in assisting them to manage devastatinginformation in the initial stages of a severe, criticalillness of a family member (Hilton, 1992; Lazarus &Folkman, 1984; Mishel, 1988). Thus, uncertainty may beviewed “as an opportunity when the alternative isnegative certainty” (Mishel, 1988, p. 231).14Coping and AdaptationAppraisal is followed by coping strategies thatenable adaptation to the situation. Coping is defined“as constantly changing cognitive and behavioralefforts to manage specific internal and/or externaldemands that are appraised as taxing or exceeding theresources of the person” (Lazarus & Folkman, 1984,p. 141). Uncertainty can make coping difficult inillness situations as the very nature of uncertaintyprecludes an accurate assessment or appraisalof the situation.According to Mishel (1988), coping strategies areimplemented in response to the type of appraisal.Coping mobilizing strategies, such as direct action,vigilance and information seeking are initiated tominimize the uncertainty and potential harmful outcomeassociated with a danger appraisal. If thesestrategies are ineffective, affect—managementstrategies, such as avoidance, are utilized to manageemotions. These may include fantasizing, faith, anddisengagement (Mishel, 1988).When uncertainty is appraised as an opportunity,coping strategies are designed to buffer or maintainthe uncertainty. Buffering is designed to block anystimuli which would alter the positive view of thesituation. Strategies include avoidance, neutralizingor avoiding information, and ignoring any information15which does not support a positive outcome (Mishel,1988).Mishel (1988) indicates that adaptation occurswhen coping strategies are effective in managing theuncertainty which has been appraised as a danger or anopportunity. Coping strategies are considered effectiveif uncertainty is reduced in a danger appraisal andmaintained in an opportunity appraisal. Mishel’s(1988) theory does not view adaptation in terms oflong—term effects such as psychosocial adjustment orhealth. In addition, the impact of a continued dangeror opportunity appraisal on long-term adaptation is notclear.This study primarily explored the relationshipbetween the antecedent variables and the familymember’s level of perceived uncertainty in the ICUexperience. In addition, the relationship betweenthe family member’s perception of severity of thepatient’s illness and the level of perceiveduncertainty was explored. Coping and adaptation was notdirectly investigated; however, this portion of theframework was addressed during the analysis of thefamily member’s perception of factors related touncertainty specific to the ICU experience.SummaryThis chapter has presented background informationand a problem statement related to the study which16investigated the uncertainty experienced by familymembers of critically ill patients in the ICU. Thepurposes, research questions and significance tonursing have been discussed. In addition, operationaldefinitions pertinent to the study have been givenand assumptions and limitations have been outlined.Mishel’s (1988) theory of Uncertainty in Illness, whichwill guide the study, has been explored. Chapter Twowill present a review of literature pertinent to thestudy.17CHAPTER TWOReview of the LiteratureIntroductionThe purpose of this chapter is to present anexploration and analysis of selected literature whichis pertinent to the study. First, an historical tracingof the literature related to ICU patients and theirfamilies will be outlined. Then, research and non—research based reports of the needs of family membersin the ICU will be presented to reflect this large areaof research and link the findings with uncertainty.This will be followed by an overview of the literaturewhich explains the perception of uncertainty. Finally,the literature pertinent to uncertainty in illness willbe presented, with particular emphasis on studies offamily members of ICU patients.Historical PerspectiveThe literature has long acknowledged that criticalillness presents a serious stressor and potentialcrisis for some family members of critically illpatients (Caplan, 1964; Hill, 1965; Moos & Tsu, 1977).The crisis of the patient’s physical illness may beextremely potent for family members related to theuncertainty associated with serious illness and thehospitalization experience (Moos & Tsu, 1977). However,the critical care nursing literature has only recently18begun to study the impact of critical illness on familymembers.Specialization and technology prompted theevolution of critical care units in the late 1950’s and1960’s (Dracup & Marsden, 1990). Nurses within thesesettings primarily focused on interventions to restoreemotional and physiological stability in the hfethreatened individual and directed minimal attention tomeeting the needs of family members (Bedsworth & Molen,1982; Daley, 1984; Gaglione, 1984; Gardner & Stewart,1978). The critical care nursing literature reflectedthis patient-centred perspective in the vast majorityof publications. Early research tended to focus on thenature of the ICU environment, the patient’spsychological responses to critical illness within theICU setting, and the patient’s physiological responseto illness (Compton, 1991). Research studies whichspecifically focused on family members in the ICU didnot commence until the mid—1970’s.Literature in the 1960’s and early 1970’s reportedmixed feelings about the presence of family members inthe ICU. For example, Kornfeld, Maxwell & Momrow(1968), in a discussion of psychological hazardsin the ICU, contended that family members may be asource of comfort or a source of anxiety for criticallyill patients. These authors also indicated “constant19questioning by family members could interfere withstaff functioning”(p.48). These authors advocatedthat nurses control the presence of visitors todecrease patient anxiety and to improve the nurse’sfunctioning. Strauss (1968), in a description of socialrelationships, agreed the reactions of family memberscould be a source of stress for nursing staff. She,however, felt emotional reactions, such as anxiety,might be attributed to tactics which nursing staff usedto minimize family involvement in the ICU.A number of authors began to speculate in the late1970’s, that, similar to patients, family members mightexperience unique stressors and needs in response tocritical illness in the ICU setting (Breu & Dracup,1978; Gardner & Stewart, 1978; Molter, 1979). Numerousstressors for family members of ICU patients were citedin a number of reports which primarily included theclinical observations of various health careprofessionals. Only a few research studies were locatedwhich specifically investigated family members’perceptions of stressors in the ICU (Bedsworth &Molen, 1982; Doerr & Jones, 1979; Potter, 1979).Some authors then began to promote increasedinvolvement of nursing staff with family members asan intervention to reduce the stress experienced bypatients, family members and staff (Chatham, 1978;20Doerr & Jones, 1979; Gardner & Stewart, 1978; Rasie,1980). Two research studies investigated interventionsfor family members with the goal of reducing thenegative impact on patients which results fromemotional distress in family members. These studiessuggested preparation of family members, in the form ofverbal or written instructions, decreased patientstress in coronary care unit (CCU) patients (Doerr &Jones, 1979) and decreased post—operative confusion inopen heart surgery ICU patients (Chatham, 1978).Research studies of the late 1970’s and the 1980’sbegan to emphasize that critical illness impacts on theentire family as well as the patient. A number ofauthors advocated that critical care nurses expandtheir role to care for family members (Bouman, 1984;Gaglione, 1984; Rasie, 1980). The literature emphasizedhowever, that most critical care nurses did not have astrong knowledge or understanding of the needs andconcerns of family members (Bounian, 1984; Daley, 1984;Geary, 1979; Jillings, 1981; Molter, 1979).Consequently, a series of research studies wereundertaken whose primary purpose was to address thequestion: What are the needs of family members ofcritically ill patients? This intense activity hasresulted in an extensive knowledge base in one focusedarea of research, namely family needs. This researchwas also driven by the evolution of a Critical Care21Family Needs Inventory (CCNFI) originally developed byMolter in 1976. Recently, the focus of research hasbeen expanded to include a few qualitative studieswhich have explored family members’ subjectiveperceptions of needs during the ICU experience.The Needs of Family Members of ICU PatientsResearchers who investigated the needs of familymembers acknowledged that family members must struggleto reorganize roles and functions to cope with theserious illness of one member (Bouman, 1984; Daley,1984; Leske, 1986; Molter, 1979). These researchershave worked from the assumption that identification ofneeds would eventually facilitate the development ofinterventions to meet those needs, and prevent thedevelopment of a crisis situation for family members ofcritically ill patients. Literature that pertains tothe needs of family members of ICU patients falls intotwo categories: 1) studies which have used the CriticalCare Family Needs Inventory (CCNFI) to identifyand rate the importance of family needs; and 2) studieswhich have used a qualitative approach to explorefamily needs. Selected studies which have focused onICU patients will be presented to demonstrate howthe type of information obtained is tied to theuncertainty prevalent in the situation.22Studies Using The CCFNIMolter (1979) constructed a needs instrumentwhich consisted of a 4-point Likert scale with 45 needsstatements developed through a literature review and asurvey which investigated the opinions of 23 graduatenursing students. Molter then conducted a researchstudy to investigate and rank the importance of theneeds of family members of ICU patients within 48 hoursof the transfer from the ICU. Information concerningthe patient’s condition and prognosis, the need forhope, and a caring attitude by hospital personnel wererated as the most important needs.Subsequent studies used a slightly modifiedversion of Molter’s original instrument which was thenreferred to as the CCFNI. Daley (1984) investigatedthe needs of 40 family members of 28 patients who hadbeen in the ICU less than 72 hours. Daley noted familymembers’ needs for information and relief from anxietywere greater than in Molter’s study. The need for hopewas slightly lower. Daley suggested these findings mayhave been related to the fact that Molter collecteddata retrospective to the ICU phase. An open—endedquestion added to the scale did not identify any newneeds.Although the ranking of needs varied slightlyacross studies which used the CCNFI, the 10 needsconsistently identified as important were: 1) to have23questions answered honestly; 2) to know specific factsregarding what is wrong with the patient and thepatient’s progress; 3) to know the patient’s prognosis;4) to be called at home about changes in the patient’scondition; 5) to receive information once every day; 6)to receive information in understandable terms; 7) tofeel hospital staff care about the patient; 8) to havehope; 9) to know exactly what things are being done forthe patient; 10) to have reassurance that the bestpossible care is being given to the patient (Hickey,1990). The need for hope was consistently valued asmost important by family members in several studies(Leske, 1986; Molter, 1979; O’Neill Norris & Grove,1986). Family members rated needs which referred tothe patient, as significantly more important thanpersonal needs in a number of studies (Daley, 1984;Molter, 1979; O’Neill Norris & Grove, 1986). The largenumber of studies producing similar results support theview that these findings are important needs for familymembers of critically ill patients in the ICU.Recent studies which used the CCFNI, have reportedthat nurses may rate the importance of family needsdifferently than family members of critically illpatients in the ICU (Jacono, Hicks, Antonioni, O’Brien,& Rasi, 1990; O’Neill Norris & Grove, 1986). Thediscrepant findings of these studies underscore theimportance of ensuring research is conducted to24determine family members’ perceptions of needs. Thestudies which used a qualitative approach to explorefamily members’ perceptions of needs began to appear inthe mid 1980’s.Qualitative Studies of NeedsThe review of the literature identified four studieswhich examined family members’ subjective perceptionsof their needs during the experience of having acritically ill relative in the ICU (Cozac, 1985;FitzGerald, 1990; Mirr, 1991; Rasie, 1980). Each ofthese studies used a qualitative approach to collectand analyze data from family members of ICU patientswith a variety of medical diagnoses.Many of the findings supported the conclusionsof previous family needs studies which had used theCCNFI. Needs which were not previously identifiedincluded the need to relive the incident (Rasie, 1980)and the need to distract themselves from the situation(Cozac, 1985; FitzGerald, 1990). All of the reportedqualitative needs studies indicated that family membersdesired more information but experienced uncertaintyabout obtaining it. This uncertainty was eitherbecause they did not know what questions to ask (Cozac,1985; FitzGerald, 1990; Rasie, 1980), they experienceddifficulties commmunicating with health care providerswho were perceived as unapproachable (Cozac, 1985), orit was not clear who could provide what information25(Cozac, 1985; Rasie, 1980). Several of theresearchers indicated family members requiredinformation about relevant medical and nursinginterventions (FitzGerald, 1990; Cozac, 1985; Rasie,1980) and directions about what to do at the bedside(FitzGerald, 1990; Cozac 1985). FitzGerald (1990)attributed this latter finding to the highly technicalenvironment and complex treatments required to supportthe care of the patient in the ICU.The qualitative family needs research studiesand the studies which used the CCNFI provide supportfor the problem being addressed in this study.These studies suggested that uncertainty may be avariable contributing to the some of the needs offamily members of ICU patients. Some of thefindings appear to be linked with uncertainty aspreviously identified by Mishel (1981, 1983, 1984).For example, the consistent need for informationappears to be related to the uncertaintyassociated with the patient’s condition or severityof illness and the unfamiliar hospitalizationexperience. The need for hope may be related tothe uncertainty related to the patient’s prognosisand potential for future mental or physicaldisabilities.The limitation of the above literature withrespect to the proposed study is the significant lack26of investigation which specifically addressesfamily members’ perceptions of factors which maycontribute to uncertainty. Findings specificallyreported as related to uncertainty have includedlack of information and uncertainty about prognosis.Further research is required to determine if otherfindings specific to the ICU experience, such aschanges in family roles, create uncertainty forfamily members. Thus, the second section of thisreview will specifically focus on discussionof the literature regarding uncertainty and studieswhich have explored the uncertainty experienced byfamily members of ICU patients.UncertaintyPerception of UncertaintyUncertainty is best defined by Mishel (1988) asthe “inability to determine the meaning of illness-related events” (p. 225). It is the cognitive statethat occurs “in situations where the decision—maker isunable to assign values to objects and events and/or isunable to accurately predict outcomes” (McIntosh, 1974,p. 170). Uncertainty evolves when the individual isunable to adequately structure and classify eventsbecause of insufficient cues or information (Budner,1962; Hilton, 1992).Several authors have identified ambiguity as akey factor which contributes to the development of27uncertainty (Lazarus & Folkman, 1984; Hilton, 1992;Mishel, 1984; Shalit, 1977). Budner (1962) statedsituations which create ambiguity include: completelynovel situations which contain few familiar cues;complex situations which contain a great numberof cues to be considered; and contradictory situationsin which different cues suggest different structures.Lazarus and Folkman (1984) differentiated betweenambiguity or a lack of situational clarity, anduncertainty, which is the state which occurs when theindividual is unable to determine the meaning ofenvironmental stimuli.The perception of events is also influenced byfactors within the individual, such as commitments,beliefs, previous experience, and cognitive abilities(Lazarus & Folkman, 1984; Mishel, 1988). Accordingto Lazarus & Folkman (1984), one of the crucialfactors influencing appraisal is commitment which“espresses what is important to the person” (p. 56).Uncertain events prevent the individual from creatinga clear perception of what is happening or what willoccur (Budner, 1962; Duncan, 1972; Hilton, 1992;Mishel, 1981, 1984; Wiener, 1975). Uncertaintyultimately limits the individual’s ability toadequately appraise a situation and implementappropriate actions or coping responses (Mishel, 1984;Hilton, 1992).28Uncertainty As A Stressor in the ICU ExperienceThe literature suggests illnesses which are hfe—threatening, serious and difficult to control arereplete with uncertainty for family members as well aspatients (Comaroff & Maguire, 1981; Lazarus, 1974;Hilton, 1992; McDonald, 1992; Mintun, 1984). Mishel(1988) stated the events which surround illness rarelyhave the necessary components to allow individuals todevelop a cognitive structure which enables them tosubjectively evaluate the treatment or illnessexperience. This situation may be magnified in the ICUwhere the hospitalization experience is very unfamiliarand complex, and involves significant threats tosurvival and health.Uncertainty is usually evaluated as a threat inillness situations (Lazarus & Folkman, 1984; Hilton,1992; Mishel, 1988). The inability to resolveuncertainty which is perceived as threatening canresult in emotional distress, anxiety, and worrying(Hilton, 1992). Research studies have shown thatuncertainty is associated with emotional distressand/or anxiety in hospitalized patients with medicaldiagnoses, in parents of children admitted to the ICU(Mintun, 1984) and in patients with myocardialinfarctions (Christman et al., 1988; Webster &Christman, 1988).29Uncertainty is evidenced in the numerous examplesof stressors which pervade the literature related tofamily members of ICU patients. The majority of theseexamples are primarily clinical observations from theperspective of the health care professional. Onlythree studies were located which specificallyinvestigated family members’ perceptions of stressorsin the ICU. Although the literature rarely identifiesuncertainty per se, it appears characteristics ofuncertainty are attributes of many of the citedstressors. The stressors identified in the researchand non—research based reports relate to selectedcharacteristics of uncertainty. The characteristicsidentified include: ambiguity, lack of clarity, lack ofinformation and unpredictability.Ambiguity.A major source of ambiguity for family members ofICU patients lies in the highly technological nature ofthe ICU (Mishel, 1983; Miles et al., 1991). A numberof authors have observed that family members may not beable to discern the purposes for many of the complexprocedures, treatments and unfamiliar pieces ofequipment (Gardner & Stewart, 1978; King & Gregor,1985; Mishel, 1983; Rukholm, Bailey, Coutu-Wakulczyk, &Bailey, 1991; Roberts, 1976). In addition, familymembers may have difficulty comprehending the effect of30the various treatments and procedures. According toMishel (1983), the inability to determine cause andeffect is characteristic of ambiguity.King & Gregor (1985) cited the mechanicalventilator as one type of technology which is ofparticular concern to family members because itprevents conimunication between the family member andthe patient. In addition, these authors stated theventilator may serve as tangible evidence that thepatient is seriously ill, thereby heighteninguncertainty about the patient’s outcome.The meaning of technology was explored in aqualitative study conducted by Burke & Nagle (1993).These investigators explored 9 spouses’ perceptions oftechnology in the ICU environment. They determinedthat spouses used technology to monitor the progress ofthe patient. The authors reported all spousesexperienced an initial uncertainty and fear aboutthe technology, especially alarms and changes inthe monitor. Many spouses, however, came to associatethe technology with a sense of security. It was felt“knowing that the patient was being closely monitoredby the nurses and the machine was reassuring” (p. 26).In addition to technology, numerous clinical examplesindicated that family members may experience ambiguityrelated to difficulty in interpretation of thepatient’s symptoms (Mishel, 1983). The patient who31is unconscious or unresponsive was cited as a majorsource of uncertainty for family members (Cozac, 1985;Elliott & Smith, 1985; King & Gregor, 1985; Mathis,1984). In general, this finding is attributed to thepatient’s inability to communicate and increaseduncertainty about progression of illness. Pain, or thefear of future pain which may be experienced by thepatient, was cited as a symptom which is distressingfor family members of ICU patients (King & Gregor,1985; Miles et al., 1991; Roberts, 1976; Rukholm etal., 1991). Finally, the clinical examples indicatedfamily members may experience ambiguity when they havedifficulty distinguishing between symptoms which arethe result of the illness and symptoms which are theresult of treatment.A study conducted by Rukholm et al. (1991)suggested that ambiguous symptoms, such as pain orlevel of responsiveness, can be a major source ofstress for family members. As part of a largerstudy which investigated the relationships betweenfamily needs and anxiety in a convenience sample of 165family members of ICU patients, these investigatorsconcluded that the relative’s pain, followed by levelof responsiveness and the number of tubes created themost worry for family members. The least upsettingworries were physical environmental factors such as thesight of other patients, staff conversations and noise.32The investigators suggested the common nursing practiceof providing information at the bedside may haveexplained the subjects’ lack of concern for elements inthe physical environment. Subjects may haveexperienced other worries but conclusions cannot bedrawn as the investigators did not report specifics oftheir investigator—constructed scale.Lack of clarity.Family members may experience a lack of claritywhen there is insufficient explanation or a lack ofcomprehension. A stressor which is frequently citedappears to be uncertainty about establishingrelationships with unfamiliar health care providers.Family members may also experience uncertainty aboutobtaining information from health care providers whoare perceived as unapproachable or “too busy” tocommunicate (Gardner & Stewart, 1978; King & Gregor,1985; Miles et al., 1991; Mirr, 1991, Mishel, 1983).Lack of clarity may also exist when family members donot receive adequate explanations or if theexplanations provided are conveyed in unfamiliarmedical jargon (Davis, 1960; Mishel, 1983). Familymembers may have difficulty comprehending related tofatigue or limited education (Mishel, 1983). Inaddition, family members of critically ill patients mayexperience a wide range of physical and/or emotionalresponses, such as anxiety, disorganization, and33difficulty eating, sleeping or concentrating (Caine,1989; Gardner & Stewart, 1978; Gilliss, 1984; McDonald,1992; Mintun, 1984; Potter, 1979; Rukholm et al.,1991). These responses contribute to fatigue andstress which may decrease the family member’s abilityto comprehend information.Lack of information.Mishel (1983) stated a lack of information canoccur when information is not shared or known.Uncertainty evolves when there is insufficientinformation to recognize or classify events (Budner,1962; Hilton, 1992; Sadowsky, 1982). Insufficientinformation is frequently cited as a major stressor forfamily members of ICU patients (Caine, 1989; Chavez &Faber, 1987; Comaroff & Maguire, 1981; Elliott & Smith,1985; Gardner & Stewart, 1978; Hodovanic, Reardon,Reese, Hedges, 1984; Miles et al., 1991). Although theliterature reviewed indicated family members desiremore information on virtually every aspect of thepatient’s treatment and illness experience, very fewfactors are actually cited as contributing to thefamily member’s perception of insufficient information.Lack of information about the patient’s diagnosisand prognosis is the one factor which is consistentlycited as creating uncertainty for family members(Burke & Nagle, 1993; King & Gregor, 1985; FitzGerald,1990, Mirr, 1991). Mirr (1991) noted that family34members of ICU patients who were not competent to maketheir own decisions, often experienced difficultymaking decisions in their role as proxy decisionmakers. These family members indicated a lack ofinformation about the patient’s eventual outcome madeit extremely difficult to make decisions. Thisdifficulty may be explained by Sadowsky (1982) whodescribed uncertainty as “the gap between what is knownand what is unknown to make correct decisions”(p. 342).Unpredictability.A final characteristic of uncertainty may beunpredictability about the outcome of the patient’sillness and the changes that may be necessary in theroles and responsibilities of family members. Familymembers may be unclear on what they can or cannot do tohelp the ill family member and often lack markers bywhich to assess the patient’s progress or recovery(Comaroff & Maguire, 1981; Hilton, 1992; Mishel, 1983).A descriptive study by Potter (1979) suggested thatuncertainty about changes in family responsibilitiesmay be a major stressor for family members of ICUpatients. Potter investigated 75 family members’perceptions of sources of stress in 3 different ICUs.The sampling procedure was not described. Potterconstructed a 5—point Likert response scale to measuresources of stress related to: 1) environmental stimuli;352) information and visitation; 3) family roles andresponsibilities; and 4) the patient’s body image.Potter proposed that environmental stressors would bemost distressing for family members. Findings, however,suggested that factors threatening changes in familyresponsibilities were perceived as sources of greatestconcern. It is not clear what factors may createuncertainty in family members’ roles, as theinvestigator did not describe the specific factorswhich composed the 4 subscales of her instrument.In summary, it appears that uncertainty may be anattribute of many of the stressors identified in theresearch and non—research based reports of familymembers of ICU patients. However, the link betweenuncertainty and the identified stressors is primarilymade by this investigator and rarely overtly describedin these reports. In addition, most of theinformation related to stressors experienced by familymembers of ICU patients is based on the perspective ofhealth care professionals. Studies which reveal familymembers’ own perceptions may be more accurate.Studies of Uncertainty in Family Members of ICUPatientsThe majority of research related to uncertainty inillness has focused on individuals either in thehospital or community. Research studies which haveinvestigated the uncertainty experienced by familymembers and, specifically family members of ICU36patients are limited. The literature reviewedfalls into two categories: 1) studies which used thefamily member version of the Mishel Uncertainty inIllness Scales (MUIS) to measure the uncertaintyexperienced by family members of ICU patients; and2) studies which used a qualitative approach to explorefamily members’ perceptions of uncertainty during theICU experience. An adapted version of the originalMUIS was used to measure uncertainty in this study.Thus, it is appropriate that, prior to reviewing thesecategories, pertinent background about the MUIS will bediscussed.Background About the MUISMishel’s (1988) nursing theory of Uncertainty inIllness, as described in the preceding chapter, wasbased on the work of several theorists. Mishel’stheory evolved over time from the results of a numberof studies which measured uncertainty using the MishelUncertainty in Illness Scales (MUIS) or variousmodified versions of the MUIS. In 1981, the MUIS wasdeveloped from an exploratory interviews of 45hospitalized patients to determine their experienceswith hospitalization. The interviews centered aroundfour illness—related tasks which were a part of Moos’(1977) theory of Coping with Illness. The tasks were:dealing with symptoms, managing technical environmentsand establishing relationships with health care37providers, dealing with special treatments and sideeffects, and assessing the future and independence(Moos & Tsu, 1977; Mishel, 1981). A list of statementsfrom the interviews was compiled and submitted to agroup for judgement to determine which statementsreflected uncertainty. Information was not providedabout the composition of the group which evaluatedthe list of statements. This resulted in a 54 itemscale which was administered to 259 hospitalizedpatients and factor analyzed.Mishel (1981) reported the findings of threevalidation studies which were conducted with the MUIS.The first study tested the proposition in the previous259 patients, that patients undergoing “rule-out”diagnostic procedures perceive more uncertainty thanmedical or surgical patients with confirmed diagnoses.As expected, the total uncertainty score was greater inthe undiagnosed group than the groups with confirmeddiagnoses. The second validation study tested andsupported the hypothesis that uncertainty would bestrongly related to the degree of stress experienced by100 medical patients as measured by the Hospital EventsScale (Volicier, 1977). Construct validity wasdetermined in the third validation study by convergingthe scale with a different scale measuring the sameconstruct. The hypothesis that uncertainty would berelated to a lack of comprehension was tested and38supported when the MtJIS and the ComprehensionInterview adapted from the Recall Test (Cassileth,1980) were administered to 26 cancer patients on theirfirst day of treatment.The original MUIS measured the uncertaintywhich individuals experienced about their own illness.In 1983, Mishel proposed to modify the instrument toallow individuals to evaluate the uncertainty whichwas experienced in response to another’s illness.Mishel modified the instrument to specifically measurethe uncertainty perceived by parents of hospitalizedchildren. The modified instrument was called theParent Perception of Uncertainty in Illness Scales(PPUS). The modified instrument underwent proceduresto establish validity and reliability which aredescribed in Chapter 3.Mishel recommends slight adaptations to the PPUSto measure the uncertainty perceived by family membersof ill individuals. The adaptations to create thefamily member version of the PPUS (PPUS-FM) are alsodescribed in Chapter 3. Mishel does not indicate anysubsequent testing to establish validity or reliabilityhas occurred with the PPUS-FM (Mishel & Epstein, 1990).Multiple studies, primarily of individuals incontrast to family members, have used the MUIS toinvestigate uncertainty in illness. These studieshave resulted in a large normative data base from39which to draw conclusions about the relationshipsbetween uncertainty and demographic variables such asage, education, gender and previous ICU experience(Mishel & Epstein, 1990). A significant relationshipbetween lower levels of education and higher levels ofuncertainty has been suggested (Mishel, 1984;Mishel & Epstein, 1990). Uncertainty scores do notappear to differ by age or gender (Mishel & Epstein,1990). The data base for studies using the PPUS or thePPUS-FM is too preliminary to draw firm conclusionsabout relationships between uncertainty anddemographic variables (Mishel & Epstein, 1990).Studies Using the Family Member Version of the MUISThree studies were located which measureduncertainty using the PPUS-FM in a variety of ICUsettings. In the first study, Mintun (1984)hypothesized parents of children admitted to thepediatric intensive care unit (PICU) on an unplannedbasis would perceive higher levels of uncertainty thanparents of children admitted on a planned basis. Theplanned admissions group consisted of 21 parents, whilethe group of unplanned admissions consisted of 28parents. The total uncertainty score for all 49 familymembers was at a moderate level (j = 77.57, Q = 18.8;range 31 —155; scale range = 31-155; midrangeuncertainty score = 93). Findings supported theexpected hypothesis. Subjects who had no opportunity to40plan for their child to be a patient in the PICUexperienced higher levels of uncertainty than the groupwho were able to plan. Analysis of covariancedetermined the uncertainty subscores of Lack ofInformation ( = 6.59, p = .0136) and Unpredictability= 14.37, p = .004) were statistically significant inthe unplanned group. Mintun explained these resultscould have been due to the types of patients in eachgroup. The planned group was comprised of parents ofchildren hospitalized for a relatively predictablecourse of surgery, while the unplanned group wascomprised of parents of children with medical problemswhich often did not have a definitive diagnosis orclear treatment plan. Other factors, in thisinvestigator’s opinion, which may have contributed tothe increased perception of uncertainty in theunplanned group were: a greater percentage ofchildren under the age of 6, and a greater number ofchildren who may have been more severely ill asreflected by higher percentages of comatose and/orventilated patients. A strong but not statisticallysignificant relationship was noted between uncertaintyand State Anxiety scores.In the second study, Steffan (1988) used anon—experimental descriptive design to measureuncertainty in a convenience sample of 43 familymembers of critically ill adult patients in the41medical-surgical ICU5 of two different hospitals. Thesample consisted of 79% females and 21% males. Sixty—nine percent of the sample were either a spouse oradult child of the patient. Steffan investigated therelationships between uncertainty and the variables ofprior hospitalization, medical diagnosis, familialrelationship to the patient, and seriousness ofillness. The time of data collection in relation topatient stay in the ICU was not stated.Total uncertainty scores suggested a moderatelevel of uncertainty ( = 78.79; range = 54 - 98; scaleuncertainty score range = 29 — 145; scale midpointscore not reported). This finding was not expected norexplained by the investigator. Multifactor analysis ofvariance (MANOVA) demonstrated interaction between thevariables of medical diagnosis, prior hospitalization,familial relationship, and seriousness of illness. Noneof the variables significantly explained variations inuncertainty levels of family members. However,significant relationships were suggested betweensubgroups. Family members of respiratory illness andmyocardial infarction patients and family members ofpatients with a hospitalization experience withinthe previous six months perceived higher totaluncertainty scores than other subgroups. This latterfinding is consistent with other studies which havereported an increased association between recency of42hospitalization and uncertainty (Webster & Christman,1988; Mishel, 1984). However, one-way ANOVA contrastingsubgroups was not statistically significant. Findingsalso indicated that subgroups of spouse and adult childwithin the variable of familial relationshipexperienced the most uncertainty. Findings within thespouse and adult child subgroups were statisticallysignificant. Overall, findings should be viewed withcaution as the small sample size (n = 43) may not besufficiently large for the number of investigatedvariables. In addition, this is the first study wherefamily members completed the instrument without anyinvestigator to provide instructions or answerquestions. This may have affected the accuracy ofof the responses given the stress experienced by manyfamily members in ICU.In the third study, McDonald (1992) employeda descriptive correlational research design to explorethe relationship between uncertainty and hope withinthe first six days in the ICU (Time 1) andapproximately two weeks later (Time 2) on the wardsetting. The original sample consisted of 30 familymembers of 30 patients at Time 1. This sample wasreduced to 20 of the original subjects by Time 2,related to patient death or transfer and/or familymember unavailability. Uncertainty was measured usingthe PPUS-FM and hope was measured using the Herth Hope43Scale (HSS). Findings suggested family membersof brain-injured ICU patients experience relativelyhigh levels of uncertainty overall at Time 1 ( =98.2, SD = 12.26, range = 61 - 116) and at Time 2(M = 91.4, $ = 14.04, range = 63 - 123). Thetotal uncertainty range for the scale was reported as31 - 155; midpoint scores were not available. Usinga paired t test, uncertainty scores approachedstatistical significance between Time 1 and Time 2(t = 2.23, p < .057). Pearson’s Correlationdetermined a statistically significant negativecorrelation between uncertainty and hope at Time 1(r = -.64, p < .003). At Time 2, the correlationapproached but did not reach a correlation ofstatistical significance (r = —.44, p < .053). Nosignificant relationships were found betweenuncertainty and the variables of gender, age,trauma/nontrauma, occupation, and relationship topatient.The study by McDonald (1992) provides statisticalsupport that, regardless of relationship to patient,family members of brain—injured patients experiencehigh levels of uncertainty in the ICU phase. Thisfinding is different than the previously discussedstudy by Steffan (1988) which found certain subgroupsof family members of general medical—surgical ICUpatients experienced more uncertainty than other44subgroups within the variable of familial relationship.McDonald explained the finding of high levels ofuncertainty for all family members may be relatedto the unresponsive nature and incredibly uncertainprognosis of the majority of brain—injured patients.It is not clear if this finding will be reflected inother studies of family members of general medical—surgical ICU patients.In addition to investigating the correlationbetween uncertainty and hope, McDonald (1992) alsoexplored family members’ perceptions of the ICUexperience by asking subjects a series of open—endedexploratory questions to obtain more qualitative data.Subjects were asked to describe the “worst” and “mosthelpful” things about the experience of having a brain-injured relative in the ICU. At Time 1, subjects wereinterviewed within 72 hours of the patient’s admissionto the ICU. The investigator used content analysis toclassify responses to the exploratory questions intocategories. Categories were ranked according to thefrequency of occurence. The purpose of the interviewswas to explore the overall ICU experience, in contrastto specifically exploring uncertainty. However,eighty-five percent of the responses to the descriptionof worst things reflected uncertainty at Time 1.Examples of worst things included: not knowing thefuture, not having enough information about the brain45injury and potential brain damage, and dealing with theunfamiliar environment. The investigator did notdescribe the method used to determine the category ofuncertainty. Description of helpful things included:expert care, supportive people, and information. Alimitation of the study findings, in relation to theproposed study, is the minimal description offactors which were classified in the uncertaintycategory.qualitative Studies of Family Members’ Perceptionsof UncertaintyOne study was located which specificallyexplored family members’ subjective perceptions ofuncertainty in the ICU. Turner, Tomlinson, & Harbaugh(1990) used a modified grounded theory method toexplore the dimensions of uncertainty in 13 parents ofcritically ill children in the pediatric intensive careunit (PICU). Ages of children ranged from 3 months to16 years, with the majority of children’s ages rangingfrom 3- 6 years. The children had a wide varietyof medical and surgical diagnoses and all but one childwas intubated and mechanically ventilated. Data werecollected 2 — 4 days after the child’s admission to thePICU. Data were coded and categorized into emergingthemes. The investigators concluded that familymembers in the PICU experienced four categories ofuncertainty.46The first category was environmental uncertaintywhich was related to uncertainty about the locationof resources and physical layout in the PICU, rules ofconduct, unit management or routines, and the staffhierarchy. The second category was illnessuncertainty. The majority of themes in this categorywere very similar to those identified by Mishel (1983).Findings which were different from previous studiesincluded specific concerns about the use and functionof equipment in the PICU and whether or not treatmentwas really necessary.The third category of uncertainty encompassed thecaregiver role. Parental uncertainty was minimized ifparents perceived there was sufficient staff to providequality care and if the caregiver was perceived ascompetent and empathetic. The parent’s concern overcaregiver competency also intensified with theperceived severity of the child’s condition.The final category of uncertainty was within thefamily as a system. Four themes emerged within thiscategory. First, parents experienced role ambiguityrelative to overlap between roles in the family systemand roles related to caregiving by staff. In thesecond theme, parents experienced uncertainty abouthow well they performed their parental role with thesick child and the children who remained at home.Parents described a sense of helplessness that stemmed47from their inability to comfort their child. Thirdly,uncertainty was experienced about juggling multiplerole demands such as child care, work and personalneeds. Finally, parents expressed concerns about thefuture impact of the child’s illness on each memberof the family.Although the study by Turner et al. (1990) wasconducted in a pediatric ICU, many of the categoriesof uncertainty appear relevant for family members ofcritically ill adult patients. This is the onlystudy conducted in ICU which specifically addressedfamily members’ perceptions of uncertainty related tofamily roles. The study design and methods aredescribed in detail and represent a carefulapplication of grounded theory. A limitation is themodification of the grounded theory method to eliminatea reinterview with parents to confirm data. However,measures to ensure content validity included colleaguereview and comparative coding by 2 investigators.Uncertainty and the Perceived Seriousness of IllnessIt is clear that admission to the ICU is usuallyviewed as a life-threatening situation by patientsand their family members. The literature consistentlycites concerns about the the outcome of the patient’sillness as a major stressor for family members of ICUpatients. In addition, some authors have noted that48the perceived severity of illness may influence theranking of the importance of needs perceived by familymembers (FitzGerald, 1990; Stiliwell, 1984). Forexample, in one study which investigated therelationship between the perceived importance ofvisiting needs and perceived seriousness of illness,Stiliwell (1984) found a statistically significantpositive correlation between the perceived condition ofthe patient and the “need to see my relativefrequently” (r = .63, p < .05).It seems reasonable to assume based on thepreceding examples that seriousness or severity ofillness would be positively correlated with theperceived level of uncertainty. However, two studieswhich have investigated the correlation betweenuncertainty and perceived level of illness severitysuggest this relationship is not clear. Both studiesused a visual analogue scale to measure perceivedseverity of illness. In the first study, Mishel (1983)investigated uncertainty with the PPUS in parents ofhospitalized children. She concluded total uncertaintyscores were significantly related to the parent’sperceived seriousness of the child’s illness ( = .16,p < .004). In addition, the subscale factor labelledlack of information was negatively associated with theparental perceived seriousness of illness (r = —.12,p < .03). Mishel concluded, with more information,49judged seriousness of illness increased, and with lessinformation family members were able to maintain anoptimistic or hopeful outlook. In the second study,Mishel et al. (1984) measured uncertainty using theMUIS as part of a larger study which examined thepredictors of psychosocial adjustment in 54 women newlydiagnosed with gynecological cancer. In contrast tothe 1983 study, Mishel found that although there was aweak positive relationship of seriousness of illnesswith uncertainty, it was not statistically significant.This finding was not explained by the investigator.Mishel reported that while uncertainty, less optimism,and loss of control over physical function werepredictors of adjustment difficulties, perceivedseriousness of illness was not supported as a majorvariable influencing adjustment. She also noted thatmore information about the illness situation, even ifit was life—threatening, was associated with greateroptimism about the future. She concluded that womenwho had a better understanding of their illnesssituation were better able to activate coping resourceswhich resulted in a more positive frame of mind andfewer adjustment difficulties.Summary of the Literature ReviewIt is apparent from the selected review of theliterature that the life-threatening nature of criticalillness and its associated unpredictable illness50trajectory is an experience which is potentially filledwith uncertainty for family members as well aspatients. The literature suggests this uncertaintymay be magnified in the complex and unfamiliar ICUexperience. The historical overview of the literatureindicated nurses have only recently begun to studythe impact of the ICU experience on family members.Much of this research has focused on the investigationof family needs, with a few studies conducted on thestressors experienced by family members. The findingsof these studies frequently alluded to the uncertaintyexperienced by family members, however this phenomenonhas received minimal investigation in family members ofadult general medical-surgical ICU patients. Theliterature presented demonstrated a significant gap inthe area of family members’ subjective perceptions,particularly in the area of uncertainty.Only two studies were located which measured theperceived level of uncertainty in family members ofadult ICU patients, specifically general medical-surgical ICU patients and brain-injured ICU patients.Both studies demonstrated inconsistent findings relatedto the level of uncertainty perceived by family membersof adult ICU patients. Further investigation todetermine the level of uncertainty perceived by familymembers of general medical—surgical ICU patients wasdetermined to be warranted.51The literature reviewed consistently citedconcerns about the patient’s condition and prognosis asmajor stressors for family members of ICU patients.Several studies indicated that perceived seriousnessof illness may have a major impact on the ranking ofthe importance of needs by family members of ICUpatients. It seemed reasonable to assume thatperceived seriousness or severity of illness wouldbe positively correlated with uncertainty. However,the two studies which were located that investigatedthis relationship reported inconsistent findings.Therefore, investigation of the relationship betweenuncertainty and perceived level of illness severity wasneeded.The literature presented primarily represents theperspective of health care professionals. Only twostudies were located which explored family members’perceptions of uncertainty in the ICU experience.These studies were conducted with parents of childrenin the PICU and family members of brain-injuredpersons. No studies were found which specificallyinvestigated family members’ perceptions of factorswhich are related to uncertainty in the adult medicalsurgical ICU. This research study specificallyaddressed the need for increased understanding offamily members’ perceptions of uncertainty during theICU experience.The following chapter will present the methodsused to guide this research study.5253CHAPTER THREEMethodsIntroductionThis chapter describes the research design,sample, data collection procedure, instruments for datacollection, ethical review process, and the approachused in data analysis.Research DesignA descriptive correlational design was used inthis study. The investigator sought to answer thequestions regarding the level of uncertainty perceivedby family members of critically ill patients in theICU and to describe the relationship between thevariables of uncertainty and perceived illnessseverity. The relationship between the level ofuncertainty and the demographic variables was alsodetermined. In addition, the investigator exploredfamily members’ perceptions of factors whichrelated to uncertainty during the ICU experience.SettingThe study took place in two large tertiaryreferral hospitals located in Vancouver, BritishColumbia. Subjects were recruited from the generalmedical-surgical ICU located in each of the twohospitals. Both ICUs admit patients who areseverely ill and often referred from other centres inthe province. Each of the units admit approximately54600 patients per year. The average length of stay in1991 was 7 days with a range of 3 — 50 days.The ICU setting in each hospital varied slightly.In Hospital A, the ICU consisted of 10 general ICUbeds and 4 step-down ICU beds. The ICU in Hospital Bconsisted of 12 general ICU beds. Both ICUs admittedcritically ill patients with a wide variety of medicaland surgical diagnoses. In addition, the ICU ofHospital B admitted patients with transplantation oforgans and patients with burns.SampleA convenience sample of one family member for eachof 30 critically ill patients was selected for thestudy. This was based upon the number of familymembers which could be assisted to complete thequestionnaire and interview within an 8 week timeconstraint of the investigator. This sample size wassimilar to other studies which used the PPUS-FM tomeasure uncertainty in the ICU setting (McDonald, 1992;Steffan, 1988). Specific criteria established toselect the subjects for inclusion in the sample were asfollows:1. The family member was either a spouse, parent,adult child, or other person who had a significantrelationship with the patient as identified by theAssistant Head Nurse (AHN) and validated by theinvestigator.552. Only one family member for each patient wasinterviewed.3. The family member was 19 years of age or older.4. The family member had visited the patient in theICU at least once prior to the data collection.5. The family member was able to read and writeEnglish.6. The family member was not experiencing severeemotional distress as identified by the Head Nurse(HN) or AHN.As indicated in Chapter One, the critically illpatient was defined as any individual admitted to thegeneral medical—surgical ICU, who was in the ICU for aperiod of at least 48 hours and no more than sevendays. This definition was altered to exclude patientson whom treatment was being withdrawn or who werepotential organ donors. The criterion of exclusion ofpatients who were terminally ill was establishedbecause the investigator wished to focus on familymembers of individuals who, at the time of the study,were considered critically ill as opposed to terminallyill.The criterion of selection of family members whowere not experiencing severe emotional distress, asidentified by the AHN, was established to avoid furtherburdening family members who appeared to be havingdifficulty coping with the ICU experience. To further56prevent any undue stress on family members, it was alsoestablished that family members who met the criteriawould only be contacted after initial emergencyprocedures were completed and the patient wasstabilized.Data were collected over a period of seven weeks.The relationships of subjects to patients varied.There were 14 spouses, 4 parents, 9 adult children,1 adult sibling, 1 cousin, and 1 subject who, althoughnot related to the patient, confirmed with theinvestigator that he had a very significant or “close”relationship with the critically ill patient.Data were collected on each of the 30 subjectswithin the first nine days of the patient’s admissionto the ICU. Family members of patients who had been inother ICU5 prior to the patient’s admission to thestudy ICU5 (23%) were included in the study sample.The investigator felt this was appropriate as thesepatients were transferred as their situation becamemore critical. Thus, their family members perceivedadmission to the study ICU as a “new situation”.Data Collection InstrumentsThe instruments that were used for data collectionin this study are as follows:1) Parents Perception of Uncertainty in Illness Scale —Family Member Form (PPUS-FM).2) Investigator-developed Visual Analogue Scale (VAS)57to measure the perception of illness severity.3) Investigator-developed Demographic InformationSheet.4. Investigator—developed Interview Guide of semi—structured questions to explore family members’perceptions of specific factors in the ICUexperience which are associated with uncertainty.Family Member’s Uncertainty in Illness Scale (PPUS-FM)The family member form of the Parental Perceptionof Illness Scale (PPUS-FM), (see Appendix A) is amodified version of the Mishel Uncertainty in IllnessScale (MUIS) developed in 1980 and discussed in theliterature review. The MUIS was originally designed tomeasure the patient’s perceptions of uncertainty duringhospitalization. In 1983, the MUIS was modified tomeasure the uncertainty experienced by parents of illchildren. The modified scale was called the ParentalPerception of Uncertainty in Illness Scale (PPUS).The PPUS was reviewed to ensure content validityin terms of the pediatric hospitalization experience.This resulted in a 34 item Likert-format scale whichmeasured the factors of ambiguity, complexity, lack ofinformation and unpredictability. This scale wasadministered to a sample of 272 parents of childrenhospitalized for surgical, medical or diagnosticpurposes. Data obtained was used to establishreliability and validity for the new form.58Factor analysis resulted in a 31 item four—factorscale with the 31 items loading at .40 or greater.Standardized alpha was .91. Nunnally (1970) indicatesreliability ratings greater than .7 are consideredacceptable for psychosocial instruments. Preliminarysupport for the construct validity of the scale wasprovided by the finding that the surgical treatmentgroup experienced less uncertainty than the medical ordiagnostic treatment groups. This finding was expectedin light of the more stable, predictable course oftreatment for surgical patients as compared to medicalpatients.A normative data base has been established formultiple populations of parents of ill children.Coefficient aiphas are in the moderate to high range(I: = .86 — .93).The PPUS has been adapted to a family member form(PPUS-FM) to measure the uncertainty experienced byfamily members. The PPUS-FN (see Appendix A) was usedin this study to measure the uncertainty experienced byfamily members of adult ICU patients. For the purposeof the study, the PPUS-FM was modified in accordancewith guidelines established by Mishel. Items werechanged by the investigator to reflect the relationshipof family members of adult patients in the ICU. Mishelalso indicates items referring to “pain” can bechanged to “symptom” or to the type of symptom most59prevalent in the patient’s illness. This change wasnot made by the investigator as the unchanged itemswere more applicable to the diverse patient populationin the ICU.Only four studies with family members of patientsare cited as contributing to the normative data basefor the PPUS—FM (Mishel & Epstein, 1990). Samples haveincluded family members of patients with diagnoses ofcancer or “rule out” myocardial infarction andpatients undergoing hemodialysis. Total scalereliabilities are in an acceptable range from .71 to.91, however, the data set is too small at present todetermine consistency in sample means (Mishel &Epstein, 1990).Visual Analogue Scale (VAS’)A visual analogue scale was developed by theinvestigator to measure the family member’s perceptionof the ICU patient’s severity of illness. (see AppendixB). The scale was patterned on other visual analoguescales used to gather information about internalperceptions or sensations, such as pain, which may bedifficult to measure on scales with predeterminedintervals (Lee & Kieckhefer, 1989). Visual analoguescales represent a type of measurement techniquewhich can be used to obtain interval level data(Woods & Catanzaro, 1988).The typical VAS is composed of a 100 mm or greater60horizontal line with end anchors that allow for theentire range of sensations regarding the phenomenonbeing studied (Lee & Kieckhefer, 1989). For the purposeof this study, the VAS that measures perceived severityof illness was 100 mm in length with end anchors of notserious to very serious. Subjects were asked to mark aline vertically through the point on the scale whichrepresented how seriously ill he or she perceived thepatient to be at the time of the interview. Perceivedseverity of illness was determined by measuring thepoint on the line and comparing to the predeterminedtotal length.Demographic Information SheetThe demographic information sheet used in thestudy was designed by the investigator to collectrelevant data about the subject and the patient (seeAppendix C). Data collected from the family member ofthe ICU patient included information about thesubject’s age, gender, relationship to the patient,employment status, education level, primary language,religious affiliation, understanding of the reasonfor the patient’s admission to the ICU, and whetherthe ICU admission was anticipated or not anticipated bythe family member. Data collected from the medicalrecord which concerned the patient included thepatient’s age, gender, number of days in the ICU,and medical diagnoses. The participating agency61was also identified as Hospital A or B on thedemographic information sheet.Interview GuideAn investigator—developed interview guide wasused for the collection of data related to familymembers’ perceptions of specific factors whichcontribute to uncertainty in the ICU experience (seeAppendix D). Mishel (1981) indicated uncertaintyoccurs in response to 1) illness concerns, such assymptoms or discomfort; 2) unfamiliar treatments orsymptoms; 3) the complex system of care, includingtechnical environments and relationships with healthcare providers; and 4) concerns about the future. Thesefour classes of events were used to develop semi—structured questions to guide the interview process. Anadditional question was developed to investigatefactors related to uncertainty about family roles orfunction as this was an identified concern in thereview of the literature which examined the stressorsexperienced by family of ICU patients. The intent ofthe interview was to describe the family member’sperceptions of factors in the ICU experience which areassociated with uncertainty.The interview questions were reviewed for clarityby a colleague, who had investigated uncertainty inbrain-injured ICU patients, and by the supervisorycommittee. Feedback from these reviewers was used to62revise the guide prior to conducting interviews in theclinical setting.Ethical ConsiderationsThis study protected the rights of its subjectsand was conducted in an ethical manner. Prior toconducting the study, permission was obtained from theUniversity of British Columbia Behavioral SciencesScreening Committee for Research and Other StudiesInvolving Human Subjects and the two participatingagencies. The initial contact of all family memberswas conducted by the Assistant Head Nurses (ABNs) ofeach of the ICUs according to a written protocoldeveloped by the investigator (see Appendix E). Theprotocol was designed to ensure family members were notunduly burdened by actual or potential participation inthe study. The protocol emphasized that family memberswho, in the opinion of the Assistant Head Nurse, werein severe emotional distress should not be contactedabout participation in the study. Thus, family memberswho were especially vulnerable were not approachedabout the study unless their stress appeared to beunder control within the time frame set for datacollection. In addition, family members were notcontacted about the study until all emergencyprocedures required by the patient were completed andthe patient was stabilized. Once these criteria weremet, the Assistant Head Nurse provided the family63member with a simple explanation about the study and aletter of information (see Appendix F). Family memberswere informed that participation in the study wasvoluntary and were given time to consider whether ornot they wished to participate. The AHNs of each ICUmaintained a record of family members who had beencontacted and whether they wished to meet with theinvestigator or not. This record was maintained toavoid duplication of initial contact which couldhave created increased stress for family member.The investigator maintained daily contact with theAHN of each ICU to determine which potential subjectscould be contacted. The investigator did not contactpotential subjects until the patient had been in theICU for at least 48 hours. Written consent (seeAppendix G) was obtained after the subject wasprovided with a detailed explanation of the study bythe investigator. The consent form was designed toallow family members to consent to completion of thequestionnaires and interviews or just thequestionnaires. When the desired number of interviewswere completed, the information letter and consent formwere altered to ensure the family member was informedabout and agreed only to completion of questionnaires.Prior to obtaining the consent, the investigatorreviewed with subjects that participation wasvoluntary, and that refusal to participate or64withdrawal from the study at any time would not impacton the care received by their ill relative. Risks andbenefits to participation in the study were describedby the investigator and outlined in the consent form.Assurances of confidentiality were also provided. Eachsubject was assigned a code number to ensure anonymityof the data. The investigator, two faculty advisors,and two secretaries who transcribed the data andperformed computer data entry were the only individualswho had access to the data. Subjects’ names were knownonly to the investigator and the consent forms werekept separate from the data. Subject’s names were notidentified on the audiotapes, written transcripts ofthe interviews, or on the questionnaires.Completion of the questionnaires and interviewswas conducted in a quiet room located near to the ICU.Nursing staff were made aware of the location of theinterview and encouraged as necessary to contact thefamily member. All subjects were offered theopportunity to discuss any feelings, concerns orquestions elicited through participation in the studyat the completion of either the questionnaires orinterviews.Data Collection ProcedureFollowing ethical approval to conduct the study,the investigator sent letters to the HN5 and AHN5 ofeach of the participating ICUs describing the study and65requesting their assistance in selecting and contactingpotential subjects (see Appendix H). Meetings wereheld with the AHN5 and HNs of both agencies to outlinethe protocol for subject selection and initial contact.In addition, the investigator sent letters to theMedical Directors of each ICU to inform them of thestudy (see Appendix I). At the request of the EthicalReview Committee of Hospital A, the investigator alsosent letters to each of the Associate Directors of theICU and ensured any questions about the study wereaddressed prior to proceeding with data collection. Theinvestigator also met with the social worker andpastoral care representative of the ICU of Hospital Ato describe the study and address any potentialconcerns. At the request of the HN, an informationpackage describing the study procedures was providedfor the social worker at Hospital B.For the first week of the study, the investigatorhad approval to proceed at only one agency, Hospital A.The investigator came to the ICU on a daily basis andwas available to assist as necessary with questionsabout subject selection and contact. The investigatorencouraged the AUN to exclude family members frominitial contact until the ARN felt comfortableapproaching the family member about potentialparticipation in the study. The decision to approach a66potential subject and the timing of the initial contactwas ultimately the responsibility of the AHNS.Initially, subject recruitment had been restrictedto within the first week of the patient’s admission tothe ICU. Ninety percent of the subjects met thiscriterion. However, either because initial contact wasdelayed or because the family member was not yet readyto meet the investigator, this criterion was altered toinclude 3 subjects with an ill relative in the ICUfor a period of up to 9 days. These subjects wereenrolled in the study as the subjects’ relativesremained critically ill. In addition, these familymembers expressed a strong desire to be involved in thestudy.Once the names of potential subjects were obtainedfrom the AHN, the investigator approached familymembers in the ICU or the ICU waiting room toestablish an interview time. This approach wasonly moderately successful as family members tended toeither want to meet with the investigator immediatelyfollowing recruitment by the AHN or were only availableto meet when they planned to visit the patient in theICU. Subject recruitment was facilitated by theAHN determining an interview time with the familymember which matched the family member’s visitingschedule and availability established by theinvestigator. The investigator was informed of67interview times by a daily telephone call to theAHN. In addition, the AHN left messages on theinvestigator’s answering machine if additionalinterviews were scheduled after the daily telephonecall. The investigator also ensured that familymembers who could only meet at a time outside of thepreestablished availability were not lost to thestudy by altering this availability as required.Four family members decided not to meet with theinvestigator after the interview times had beenestablished. One family member indicated she was “notup to it”. Two family members did not meet with theinvestigator as their ill relatives died subsequent toestablishing the time to meet with the investigator.The fourth family member chose to reschedule the timerelated to a deterioration in her relative’s condition.The fourth family member then chose to meet with theinvestigator when her relative’s condition stabilized.The data collection procedure followed for eachsubject was consistent, following the guidelinesdiscussed in the ethical considerations. At thebeginning of the interview, the investigator reviewedthe purpose of the study and subjects were also givenan opportunity to ask questions. Once all questionswere answered, the researcher obtained the familymember’s written consent, and a copy was given to thefamily member.68At the time of the interview, two family membersdecided not to participate in the study at thesuggestion of the investigator. The first familymember has just received “bad news” from the physicianand appeared very upset. The second family member hadsigned the consent but indicated she would “rather justtalk”. Both family members used the interview time todescribe their feelings and concerns related to theexperience of having a critically ill relative in theICU.Once written consent was obtained, theinvestigator provided instructions on completionof the study questionnaires. The investigator provideddetailed instruction on completion of the PPUS-FMand observed the family member complete the first twoquestions of this scale. The investigator thenremained with the family member during completion ofthe scale to provide assistance or clarification asrequired. Most family members were able to readilycomplete the questionnaire with only minorclarification, generally on items which were negativelyworded. During completion of the questionnaires,some family members verbalized factors which createduncertainty for them. Initially notes were not keptof these comments. In later interviews, if thefamily member was willing, the investigator madebrief field notes of these comments.69Several family members had difficulty completingthe PPUS-FM related to an inability to concentrate orto comprehend the scale items. Two of these familymembers had attained an educational level of Grade 8 orless, while the third family member appeared to be in astate of disbelief. One of the three family membersasked the investigator to read each item and then towrite her verbal response on the questionnaires.Despite assurances from the investigator that they werefree to withdraw from the study if they desired, allthree family members chose to continue. The majorityof participating family members were eager to completethe uncertainty questionnaire.After completion of the PPUS-FM, each subjectcompleted the VAS to measure illness severity. Subjectswere asked to base their responses on their perceptionof the present situation. None of the subjectsexperienced difficulty completing the VAS.Subjects then completed the demographicinformation sheet which concerned information about thefamily member. Following completion of all thequestionnaires, the investigator interviewed thosesubjects who had agreed to be interviewed up to a totalof 12 interviews. The semi—structured interview guidedeveloped by the investigator was used to guide theinterviews. Once again, family members were advisedthey could stop the interview at any time or refuse to70answer any question. With the exception of onesubject, all subjects were able to respond readily tothe exploratory questions used in the interview guide.The investigator endeavored to ask all the questions onguide. Additional questions were asked by theinvestigator as the interview progressed to validatethe family member’s perception of the situation or tohave the family member elaborate on examples ofevents which appeared to relate to uncertainty.The subject who had difficulty responding to thequestions was the same subject who had difficultycompleting the PPUS-FM due to an apparent state ofshock or disbelief. Despite the ongoing assurancefrom the investigator that he was free to withdraw fromthe study, this subject appeared to want to talk andchose to continue the interview. The investigatorlistened to the subject’s concerns and tried to supportthe subject during the interview.Completion of the study questionnaires tookapproximately 15 - 30 minutes, with the exception ofthe three family members who had difficulty completingthe PPUS-FM. These three family members tookapproximately 45 minutes to complete the studyquestionnaires. The interviews ranged from 30 — 45minutes in length. The majority of subjects indicatedthey were pleased to have an opportunity to sharethe experience of family members of ICU patients with71the investigator. Most subjects chose to participatein the questionnaires and the interview until onlythe option of the questionnaire was offered. At thecompletion of either the questionnaire or theinterview, the investigator asked family members ifthey had any concerns or feelings related to thestudy procedures which they would like to discuss.Family members then described a wide variety ofconcerns which were related to the ICU experienceas opposed to study procedures. In situations wherethe family member appeared to be requesting furthersupport, the investigator asked the family member ifthey would like assistance with specific concerns. Ifthe family member did not wish any assistance, theinvestigator listened to their comments and empathizedwith their situation. Two family members requestedassistance from the investigator to meet with thesocial worker and the physician. With the familymembers’ permission, these requests were passed on forfollow-up by the Head Nurse. All information from theinterview remained confidential.Data AnalysisData from the questionnaires were coded, enteredinto the computer file and analyzed using the SPSS-Xcomputer program. Measures of central tendency wereused to organize the data related to the demographicvariables which describe the study sample. Total scores72and subscale scores on the family member version of thePerception of Uncertainty in Illness Scale (PPUS-FM)were calculated to determine the level of uncertainty.Cronbach’s alpha coefficient was also calculated forthe total uncertainty scale. Then, measures of centraltendency were calculated for each subscale and totalscale of the PPUS-FM and the Visual Analogue Scale(VAS).The Pearson Product Moment Correlation wasused to determine the correlation between the totallevel of uncertainty and the perceived level of illnessseverity. In addition, correlations were performedbetween the total level of uncertainty and thedemographic variables of family member age, sex, andeducation level, the relationship to patient, previousICU experience, and whether or not the experience wasanticipated. Correlations were also determined betweeneach subscale and these variables.The taped responses to the semi—structuredquestions were transcribed verbatim by a typist. Thetransciptions were then checked for accuracy by theinvestigator by reviewing the recordings. The data wasthen subjected to qualitative content analysisfollowing a method recommended by Pout and Hungler(1985). First, the investigator reviewed the responsesto identify themes that related to uncertainty. Inaddition, notes were made as relationships between the73themes became evident. Then, the themes were collapsedinto larger categories. The investigator went back tothe data to see if the categories fit and revisedthemes as necessary. The investigator then tabulatedthe frequency with which the themes were supported byeach subject’s data. The investigator then describedthe understandings gained from the content analysis.Quotes from the data were used to illustrate theinvestigator’s findings. The draft content from thedescriptions of each of the themes was then compared tothe frequency information. Negative cases were thenreviewed to identify their impact on the investigator’sfindings. Finally, the descriptions were revised asnecessary by interpreting the insights derived from thepreceding validity check.SummaryThis chapter had described the methods whichguided the research study. The criteria and processfor selection of participants were outlined. Inaddition, the processes of data collection andanalysis were discussed in detail. Finally, ethicalconsiderations were described. The following chapterwill present the findings of the study.74CHAPTER FOURPresentation of the FindingsIntroductionChapter Four consists of two sections. Thefirst section provides a description of thecharacteristics of the sample. This descriptionincludes characteristics of the patients as well as thefamily members. The second section presents theresearch findings related to each of the three researchquestions.Characteristics of the SampleThe sample consisted of 30 family members of 30critically ill patients who were hospitalized inthe general medical—surgical ICU of one of twotertiary care hospitals in the lower VancouverMainland. Quite incidentally, fifteen family members(50%) were recruited from each of the two participatinghospitals. Characteristics are reported first interms of the study sample of family membersand then the associated critically ill ICU patients.Demographic Characteristics of the Family MembersDemographic data collected from the family membersof the ICU patients were gender, age, relationship tothe patient, occupation, educational level,country of birth, primary language, and religiousaffiliation. Of the 30 family members in the sample,7519 were female (63.3%) and 11 were male (36.7%). Theage of the subjects ranged from 29 to 73 years (14 =47.1, = 14.16)Twenty—nine of the 30 of family members (96.7%)were related to the patient by kinship or marriage.One subject was an “extremely close” friend andconsidered himself to be the “only family of thepatient.” The majority of subjects were either spouses(48.7%) or adult children of the ICU patient (30.0%).The subjects’ relationship to the ICU patients ispresented in Table 1.Table IFamily Members’ Relationship to ICU PatientsFrequencyRelationship PercentWife 11 38.7Daughter 5 16.7Son 4 13.3Husband 3 10.0Mother 2 6.7Father 2 6.7Other (Cousin, Friend) 2 6.7Brother 1 3.3Total 30 100.0The family members’ occupations were categorizedby the researcher (see Table II). The majority ofsubjects 36.7% were employed in the professional oradministrative/manager category. Homemakersrepresented another 16.7%.76Table IIOccupation of the Family MembersOccupation Frequency PercentProfessional 6 20.0Administrative/Manager 5 16.7Homemaker 5 16.7Technician/Trades 3 10.0Sales/Business 3 10.0Retired 3 10.0Unemployed 3 10.0Student 1 3.3Office Worker 1 3.3Total 30 100.0The educational level of the sample of familymembers is presented in Table III. Eighteen of thefamily members (60.0%) were educated at the universityor college level. A total of 5 family members (16.7%)had attained less than a high school education.Table IIIEducation Level of the Family MembersEducation LevelUniversity/collegeHigh School GraduateGrade 9 — 11Up to Grade 8Total2 6.73 10.030 100.0The majority or 23 family members (76.7%) were bornin Canada. Of the remaining 7 family members, 5 wereborn in Great Britain (16.6%), 1 was born in China(3.3%) and 1 was born in Tanzania (3.3%). The lattergroup of family members emigrated to Canada between theyears of 1920 and 1972. English was the primaryFrequency187Percent60. 023.377language of 27 of the family members. (90.0%). Allfamily members were fluent in English, including the 3family members (10.0%) who did not consider English tobe their primary language.Table IV displays additional data re: previousICU experience and location of family members duringthe patient’s ICU experience. Nineteen family members(63.3%) had previous experience in the ICU eitherthrough personal experience or with another ill familymember or friend. The remaining 11 family members(36.7%) had no previous ICU experience.Eighteen of the family members (60.0%) livedoutside the lower Vancouver Mainland. Family memberswere not asked if they had relocated at the time ofdata collection. This data was retrospectively recordedfrom the investigator’s knowledge of each familymember’s situation as discussed at the time of datacollection.Table IVOther Characteristics of the Family MembersCharacteristic Frequency PercentICU Experience:Previous experience 19 63.3No previous experience 11 36.7Location durina ICU stay:Remained in hometown 18 60.0Relocated to Vancouver 12 40.0Total 30 100.078Deiuocraphic Characteristics of the ICU PatientsPatient data collected from the medical recordwere age, gender, number of days in the ICU, andmedical diagnoses. Twenty patients were male (66.7%)and 10 patients were female (33.3%). Age of thepatients ranged from 23 - 83 years ( = 54.07, =17.81). Table V displays the number of days the patienthad been in the ICU at the time the family membersresponded to the questionnaires. The number of daysranged from 2 to 9 days ( = 5.03, = 1.89).Table VNumber of Days in the ICUDays Frequency Percent2 1 3.33 7 23.34 6 20.05 2 6.76 8 26.77 3 10.08 2 6.79 1 3.3Total 30 100.0The ICU patients had a wide variety of medicaldiagnoses which were categorized according to thethe most specific reason for ICU admission (see TableVI). At the time of data collection, 22 of the 30patients (73.3%) had multiple medical complications inaddition to the primary admission diagnosis.79Table VIPrimary For to th ICUDisease Category Frequency PercentCardiovascular/Vascular 6 20.0Cardiac Arrest x 1Open Heart Valvular/Bypass Surgery x 2Peripheral Artery Bypass Surgery x 1Abdominal Aneurysm Repair x 2Respiratory 9 30.0Adult Respiratory Distress Syndrome x 2Pneumonia x 2Respiratory Arrest x 1Pulmonary Emboli x 1Lung Transplant x 1Respiratory Neoplasm x 2Trauma 5 16.7Multiple Trauma (including burns) x 4Head Trauma (no multiple trauma) x 1Gastrointestinal 4 13.3Gastrointestinal bleeding x 1Gastrointestinal perforation/rupture x 2Pancreatitis x 1Miscellaneous (Sepsis,Metabolic) 4 13.3Septic Shock x 2Drug Overdose x 1Diabetes x 1Neurologic 2 6.7Subarachnoid Hemorrhage x 1Guillian Barre x 1Total 30 100.080FindincisThe level of uncertainty and level of illnessseverity were examined using descriptive statistics.The Pearson Product Moment Correlation Coefficient wasused to examine the relationship between uncertaintyand illness severity. Following reporting of thefindings related to the first two research questions,findings related to the interviews or the thirdresearch question will be reported.Research question 1: What is the perceived level ofuncertainty of family members of critically ill ICUpatients?To establish the level of uncertainty perceived bythese subjects, scores obtained on the uncertaintyscale were calculated. In addition, scores for each ofthe factors on the uncertainty scale were calculated todetermine which factors reflect the highestuncertainty.The total score on the uncertainty scale (PPUS-FM)ranged from a low of 53 to a high of 119 ( = 86.8,SD = 16.26). These findings indicated the majorityof family members perceived moderately high levelsof uncertainty. Uncertainty scores were treated as acontinuous variable for data analysis. However,uncertainty scores are arbitrarily grouped in intervalsof eight for ease of data presentation (see Table VII).81Table VIITotal Uncertainty Scores for Family MembersTotal Score Frequency Percent53 — 60 2 6.761— 68 3 10.069 — 76 2 6.777 — 84 6 20.085 — 92 5 16.793 — 100 5 16.7101 — 108 5 16.7109 — 119 2 6.7Total 30 100.0Note. The PPUS-FM consists of 31 items each scoredfrom 1 - 5. The minimum possible score is 31and the maximum possible score is 155. Midrangeuncertainty score is 93.There are four subscales of the uncertainty scale.Factor means and item means for each subscale identifyareas of higher and lower uncertainty (see Table VIII).Table VIIIPPUS-FM Factor and Item MeansFactor Items in Factor Itemthe Factor Mean MeanI Ambiguity 13 40.13 8.3 3.09II Lack of Clarity 9 19.57 5.79 2.17III Lack ofInformation 5 11.90 3.35 2.38IV Unpredictability 4 15.20 3.09 3.80Total Scale 31 86.8 20.53Note. Possible range of scores in each factor are asfollows: Factor 1 (13 - 65), Factor II (9 — 45)Factor III (5 — 45), Factor IV (4 - 20). Itemmeans are scaled 1 — 5.82The item means for the factors of ambiguity andunpredictability reflected the highest uncertainty.Research question 2: What is the relationship betweenuncertainty and the level of illness severity perceivedby family members of critically ill ICU patients?The family member’s perceived level of illness severityfor their critically ill ICU patient was measured witha 100 mm visual analogue scale which ranged from notserious to very serious. The frequency anddistribution of the subjects’ overall perceptionof illness severity were examined (see Table IX).Subjects’ rating on the visual analogue scale rangedfrom 34 mm to 100 mm (j = 83.8, = 17.63). Themajority (76.6%) of the 30 subjects rated theirperception of illness severity 81 mm or greater. Foursubjects (13.3%) perceived an illness severity withratings of below 61 mm.Table IXFamily Members’ Perceptions of Illness SeverityRating Frequency Percent0 — 10 (not serious) 0 0.011— 20 0 0.021— 30 0 0.031— 40 1 3.341— 50 1 3.351— 60 2 6.761— 70 1 3.371— 80 2 6.781 — 90 10 33.391 — 100 (very serious) 13 43.3Total 30 100.083The relationship between perceived level ofuncertainty and perceived level of illness severityusing Pearson’s Product Moment Correlation Coefficientwas r = - .02, p = .914. This indicated there was nostatistically significant relationship between thefamily member’s total uncertainty score and theperceived seriousness of their relative’s illness.However, the direction of the correlation wasnegative. Correlations between perceived severity ofillness and scores on Factor II ( = —.06, p < .74) andFactor III (r = - .22, p < .226) of the uncertaintyscale, although not statistically significant,supported this negative trend.Additional FindingsOther analyses were performed for the purpose ofidentifying relationships between uncertainty andfamily member age, gender, educational level andpatient age and gender. The Pearson Product MomentCorrelation was used to correlate the relation betweenthe continuous variables of uncertainty scores and agein years. Point biserial correlations were used tocorrelate the relationships between uncertainty and thefamily member categorical data related to gender,education level, relationship to patient and ICUexperience. Point biserial correlation provides ameasure of relationship between a continuous variableand a two—categoried, or dichotomous variable84Ferguson, 1966). categorical data for education leveland the family member’s relationship to the patientwere converted to dichotomous data because of the smallnumber of participants in each category. Educationlevel was changed to above and below high school andthe family member’s relationship to the patient wasgrouped as spouses and other. The findings of thesecorrelations are summarized in Table X.Table XCorrelations of Total Uncertainty and UncertaintyFactors and Other Demographic VariablesDemographic Uncertainty FactorsVariable 1 2 3 4 TotalPearson’s r:Family Member Age .15 .06 —.04 —.04 .08Patient Age .10 .17 .07 —.04 .11No. of ICU days .02 —.04 .04 —.23 —.04Point Biserial rpbi:Family MemberGender —.09 —•37* —.09 .05 —.19Education Level .10 —.13 -.03 •39* .07Relationship toPatient .07 39* .09 —.20 .16ICU Experience .00 .16 —.04 —.10 .03Patient Gender .05 .23 .04 -.05 .11Note. Two—tailed significance, * p < .05Uncertainty Factor 1 = Ambiguity,Factor 2 = Lack of ClarityFactor 3 = Lack of InformationFactor 4 = UnpredictabilityNo significant relationships were found betweenuncertainty and age and uncertainty and previousICU experience (see Table X). Three statistically85significant relationships were found between theuncertainty factors and the variables of gender,education level and relationship to patient. First,a positive correlation was found between spouses’uncertainty scores and the uncertainty factor of lackof clarity (rpbi = .39, p = .035). In addition, therea negative correlation was found between males’uncertainty scores and the uncertainty factor of lackof clarity (rpbi = - .37, p = .042). Finally, apositive correlation was found between the uncertaintyfactor of unpredictability and the uncertainty scoresof family members who had less than Grade 12 education(rpbi = .39, p = .033).Research Question 3: What are family members’perceptions of factors related to uncertainty specificto the ICU experience?Content analysis of the data was used to determinethe factors related to the uncertainty perceived byfamily members of critically ill ICU patients.Responses which reflected not knowing, not being sure,not being clear, vagueness, being in doubt, beingundecided, and unable to rely or count on someone orsomething were used to identify uncertainties perceivedby the family members. Sixty four uncertaintiesspecific to the ICU and general illness experience wereidentified (see Appendix J). The list of uncertainties86is helpful to visualize the wide range of uncertaintiesexperienced by family members during the ICUexperience. However, this list does not adequatelyreflect specific factors which contribute to familymembers’ perceptions of uncertainty. Thus, the datawere further explored to identify common themes. Threemajor themes related to family members’ perceptions ofuncertainty were identified from the interview data:the illness/treatment situation, the environment andsystem of care, and family member functioning. Anumber of subthemes which reflected factors related tofamily members’ perceptions of uncertainty wereidentified in each of the three themes. Table XI onthe following page displays the themes and factorswhich were related to family members’ perceptions ofuncertainty. The factors in each major theme will nowbe presented in the context of the supporting familymembers’ perceptions of uncertainty.Illness/Treatment SituationThe first major theme included those factors whichinfluenced family members’ perceptions of uncertaintyrelated to the patient’s illness or treatmentsituation. Factors included: the critical condition ofthe patient, the cause of the condition, the expectedcourse and treatment plan, monitoring the patient’sprogress, making treatment decisions, and futureoutcome.87Table XIThemes and Factors Related to Family Members’Perceptions of UncertaintyThemesIllness/TreatmentSituationThe Environment Quality of careand System of Care Relationships with healthcare providersLocating resourcesFamily Member Physical/emotional responsesFunctioning Supporting the ICU patientSupporting family membersRole conflictUncertain futureCritical condition of the patient.Family members spoke of the patient’s conditionas: “really bad, very critical, unstable, very serious,potentially fatal, a delicate balance”. Most of thefamily members directly or indirectly acknowledged thepossibility that the patient might not survive. Allfamily members but one acknowledged the patient’scondition was serious. The fact that the patient was inICU underscored the precariousness of the patient’scondition. One family member described the admissionof the patient to the ICU as both overwhelming andcomforting:FactorsCritical conditionCause of the conditionExpected course/treatment planMonitoring patient’s progressMaking treatment decisionsFuture outcome88“It had sort of a double meaning....to see allthis equipment and know that skilled people arehere to use it and understand it and do all thatwas wonderful ... but the fact that he had to behere was something else again, because it reallydid point that he was very, very ill to have to behere”.The occurrence of unpredictable complications,such as infections, relapses and secondary organfailure, contributed to the family members’ perceptionsthat the patient’s condition was critical. Althoughover half of the family members had a clear perceptionof the patient’s complications and treatment plan, theremaining family members were vague about thecomplications that existed or how they would betreated. Ambiguity seemed most prevalent when theinformation about the condition was unclear or did notexist. The following response by a daughter whosemother experienced one complication after anotherillustrates this perception:“they don’t seem to know, I don’t know whatinformation they could give me, yeah I guess itwould really help if they could find somethingand then provide me with the information”.The extent of the complications was particularlyworrisome if the family member perceived vital organs,such as the brain or liver, were involved. Some familymembers actively sought information on the extent ofthe complications while others openly admitted toavoiding such information. One family member whose89father appeared to have developed a growth in his lungssaid “maybe if I don’t ask it will go away”.The degree of uncertainty appeared to be relatedto the extent to which complications or changes in thepatient’s condition could be controlled by health careproviders. One family member who perceived her father’ssituation as extremely precarious indicated “...there’sso many other things that are going on that they feellike they’re not on top of them all”. Another familymember whose husband’s condition had stabilized stated“the technicians and doctors they really didn’tknow what they were working with at first...a lot ofthings were out of control, but then it did settle downone thing at a time as it was brought under control”.Cause of the Condition.Uncertainty appeared to increase when familymembers did not know the cause of the patient’scondition. Most family members were able to clearlystate the patient’s primary diagnosis. However, anumber of family members did not know what caused thepatient’s original problem or subsequent complications.The following responses from two different familymembers illustrate the family members’ desire to knowwhat caused the patient’s condition:“Knowing that, now that he has the cancer and thatthere is a chance with the chemotherapy that hecould respond to it, gives us some hope... it’sstill a waiting game, but I do feel morepositive ... I feel now that at least we havesomething to go on...”90“I’m unsure of what’s happening and its becausethey’re not sure what’s happening with herand that’s worrisome, cause I guess they haven’tgot down to the underlying cause. ..“In a similar vein, family members of two patients whowere trauma victims struggled to identify a reasonfor the trauma. The attempt to make sense of thesituation by one of these family members is reflectedin the following response:“ my husband has always been there, he’s beenan excellent husband really and a very goodfather, I think that’s why my kids are all soupset they don’t understand why this happened..in fact, I don’t understand either, and I knowthis is a question we’ll never have answered...why did it happen?”In the situations where the cause of the illnessor reason for the injury remained unclear, familymembers struggled for answers. Feelings related toan appraisal of the situation as a threat, such asanxiety, stress, and occasionally guilt were evident.Expected course and treatment plan.All family members in the study were eager toobtain information which would help them to predictthe expecte.d course of illness and treatment. Themajority of family members perceived they were aswell—informed as they could be given the uncertaintyand complexity of the patient conditions. Familymembers felt particularly well-informed about theexpected treatments and procedures in ICU. However,they perceived a lack of information about the expectedcourse of illness, particularly in the long—term. Some91family members acknowledged it was not always possiblefor health care providers to predict this informationwith any certainty. The wife of one ICU patient said:“I think really the questions that I want answeredare questions that they can’t answer yet, likethey don’t know if his voice box...has it beendamaged is he going to have to learn to talk allover again...things like this I wonder about butthey can’t answer that there is too much swelling...its too soon to tell”Responses to the uncertainty associated with “notknowing” the expected course ranged from resignationto frustration. Two family members who felt veryuninformed about the future course of illness andtreatment had been coping with the patient’s chronicillness prior to the ICU experience. A third familymember who also expressed an intense desire to knowthe expected course did not yet have a definitivediagnosis despite a total stay in hospital of ninedays. All three family members expressed uncertaintyabout the patient’s progress.Family members varied in their preoccupationwith the uncertainty associated with not knowingthe patient’s future course or treatment. For themost part, the family members of patient focused onobtaining information about the immediate courseand treatment plan. Family members found it helpfulto know the expected stages or steps which mightoccur during the patient’s ICU stay. One familymember found it reassuring to predict what steps92might occur next:reassuring to, the goal in my mind was tofind out what was wrong and then we foundout what was wrong, the next goal is to seehow he manages with the chemotherapy and ifthat progresses fine, then the next goal tosee him get off the ventilating machine, we’redoing it step by step”Monitoring the patient’s progress.Monitoring the patient’s progress to drawconclusions about condition and treatment constitutedthe fourth factor which influenced the family members’perceptions of uncertainty in the illness/treatmentsituation. Family members assessed the patients’progress by observing for signs that the patientwas returning to “normal”. These observations primarilycentered about everyday signs such as the patient’sphysical appearance, level of responsiveness,and ability to eat, drink or breathe. In addition, afew family members attempted to interpret treatmentchanges, such as a decrease in the amount of painmedications. Family members usually relied onphysicians and nurses to clarify their questions aboutthe patient’s progress. However, at times, some familymembers placed more emphasis on their own assessment ofthe patient’s progress or depended on the observationsof other family members to form conclusions. Theaccuracy of their conclusions varied, Signs which wereambiguous tended to result in uncertainty, while moredistinct signs decreased family members’ perceptions of93uncertainty. Responses from two different familymembers illustrate these findings:“Today for the first time I picked up his hand andgave a supportive squeeze like I’ve done in pastdays and received no response but today I receiveda squeeze back that said he’s there and he looks,you can see his eyes, there’s life and presencebehind his eyes, its not doing slates [j)...weknow its a positive progression, it seems to bethat he’s making positive steps”“His legs kind of thrash and he keeps lifting hisarm, trying to get it to his face so we know thatthere is pain in the face. . .1 don’t really knowat this point, how much he really knows its painor just an agitation, like hair falling on yourface”Family members experienced particular difficulty ininterpreting symptoms related to the patient’s levelof consciousness or responsiveness. Family membersbecame anxious or worried if they concluded therewas a possibility that the patient might be in painor emotional distress.In addition to monitoring the patient’s physicalsigns, family members sought to evaluate treatmenteffectiveness through their knowledge of the expectedcourse, time frames and the results of tests.Two family members commented:“I’m anxious to see what the cat scan shows, andif there are any new things that we have to thinkabout or be concerned about or new things todecide ...its one of those things we like to say,we’ll know more after the scan, so you let thescan be the milestone...”“By the end of this treatment by Sunday or Mondaywe should have some indication of how well he isresponding...”94Making treatment decisions.Another factor which related to uncertainty inthe illness/treatment situation was the making ofdifficult treatment decisions by family members.Several family members in the study expressed doubtsabout decisions they had made to commence or continuetreatment. Family members wondered if they hadsufficient knowledge about the patient’s wishesand the eventual prognosis to make decisionswhich were in the patient’s best interests. Inaddition, these family members questioned if itwas morally right for them to make critical life anddeath decisions on behalf of the patient. Decisionswere particularly difficult if the family memberperceived there was a possibility that the patientwas suffering or might suffer. The agony experiencedby one family member is captured in the followingquote:“We know mum’s seriously ill and we say that wehave doubt whether we should have allowed her togo peacefully or continue giving her treatment,the bottom line is how much is she hurting, howmuch is she aware, is she still angry atright now its okay for a few days.. . . let’s carryon but make sure she doesn’t hurt, make sure shedoesn’t hurt, make sure she doesn’t hurt, its allwe ask...”Future outcome.The final factor related to uncertainty in theillness/treatment situation which was acknowledged byall family members was uncertainty about the patient’s95outcome. This uncertainty varied widely from vaguestatements about “not knowing the future” to specificquestions about future complications, disability orquality of life. A number of family members directlyor indirectly indicated the prevailing concern relatedto future outcome was not knowing if the patient wouldlive or die. This uncertainty so overwhelmed severalfamily members that they had difficulty moving beyondthe present to contemplate the future. One familymember’s comments illustrate this finding:“this could be it, he might not come out thistime, so its, I mean when he comes out then itwill be a bonus to have him home again. I haven’teven really thought about that, even just gettingout of the ICU up to another ward, I haven’teven.. •“A number of family members wondered if the patientwould have future complications or disabilities. Mostfamily members acknowledged it was “too soon to know”.Some of these family members tried to put theseconcerns to the “back of the mind”, while othersmonitored the patient’s condition for signs that thepatient was returning to “normal”.Four family members had been alerted to thepossibility that the patient might have suffered abrain injury. This uncertainty was perceived asdisturbing for the family members who collectively hadvery negative beliefs about brain injury. In addition,these ICU patients had varying levels of responsiveness96making it difficult for the family members to interpretprogress.Almost all of the family members expressed doubtsabout the patient’s eventual quality of life. Familymembers’ responses indicated a good quality of lifeinvolved “returning to normal activities, no majormental or physical disability, no major pain orsuffering”. Doubts were primarily related to thefamily member’s perception that the patient was or hadbeen so seriously ill that they may never be able toachieve full recovery. In addition, the family memberswho had expressed doubts about making treatmentdecisions for the patient were particularly concernedabout the present and future quality of the patient’slife.The Environment and System of CareThe second major theme related to family members’perceptions of uncertainty was the critical careenvironment and system of care. Responses indicatedthat the majority of family members perceived minimaluncertainty about unfamiliar routines, procedures ortechnology. Family members attributed this perceptionto “feeling comfortable, informed, reassured” in theICU setting. Factors which influenced family members’perceptions of uncertainty about the environment andsystem of care included: quality of care, relationshipswith health care providers, and locating resources.97Quality of care.Family members’ responses indicated the perceptionof a high quality of care in ICU was related to healthcare provider competency, caring approach, and the useof high technology. Most family members perceivedthat health care providers in the ICU were highlyknowledgable and competent. They relied on health careproviders to maintain “control” over the patient’sprecarious condition. Some family members feltreassured by the presence of highly visible staff insufficient numbers to handle sudden changes incondition or emergencies.The majority of family members also perceived ahigh quality of care related to the caring andempathetic attitude demonstrated by health careproviders towards the critically ill ICU patients.Talking to the patient who may or may not be aware,relieving the patient’s pain, and touching the patientwere examples of behaviours viewed as caring by familymembers. Uncertainty was modified when this caringapproach was extended to family members as well aspatients. The importance of a caring approach towardsfamily members is reflected in the following response:“they’re concerned about us, this is their job,we are almost one, a larger group than my brother,he’s the patient and of course the main concern,but they are embracing the whole family as a unitthey’re there to help and its very supportive”Receiving regular updates about the patient’s condition98and progress, being allowed access to the patient andfeeling that the staff were concerned about the familymember were viewed as caring behaviours towardsfamily members.Family members also perceived the high quality ofcare in ICU was related to the use of technology. Mostfamily members acknowledged that seeing the patient inICU surrounded by tubes and monitors was initiallyoverwhelming. Family members spoke of technology as“having a purpose, a necessary procedure, keepingthings under control, providing information.” Inaddition to relying on health care providers’interpretations of technology and related changes inthe patient’s condition, some family membersacknowledged attempting to interpret monitor readingson their own. Some family members used thisinformation to draw conclusions about the patient’scondition and progress; others drew no conclusions butfelt a sense of control when they attempted to “makesense of what was going on”.Some family members perceived that they felt “muchsafer when the patient was hooked up to machinery”.This perception was particularly evident in theuncertainty expressed about discontinuing “lifesupport” technology, such as the mechanical ventilator.While the majority of family members expressed faith intechnology, one family member who had previously99experienced the death of a child in a pediatric ICU,expressed doubts about the use of technology to prolonglife.The majority of family members expressed greatconfidence in the overall quality of care provided byICU staff. However, a few family members had doubtsabout the specific actions of some health careproviders. For example, one family member expressedconcern about an “unexpected” complication in theoperating room. She was not sure she was receiving the“full story” about this complication and indicated shewas not “totally happy with the physicians and theirapproach to the family”. Some family members perceiveddoubts when they observed behaviour which was notcongruent with their expectations of ICU staff. Forexample, one daughter was uncertain when the physicianand nurse did not appear to collaborate on the plan oftreatment. She commented:“How come she [the nurse] didn’t know that, howcome you guys [physicians and nurses] don’t get ittogether, he [the physician) told me not to do itand now you’re doing it...”Although family members rarely criticized thequality of care provided by ICU staff, they were lessreluctant to express concerns about the quality ofcare delivered outside the ICU setting. Several familymembers were perplexed how the patient reached such a“state of crisis” on the ward before they were100transferred into the ICU. Other family membersperceived uncertainty and anxiety about the eventualtransfer of the ICU patient to the ward. They doubtedthat there would be sufficient staff or technologyoutside the ICU setting to adequately assess or monitortheir ICU patient.Relationships with health care providers.Family members depended on the health careproviders to manage the patient’s critical condition,to keep them informed, and to allow them access to thepatient. Some family members placed their trustglobally in all health care providers; while othersfelt more comfortable when they interacted with aconsistent physician or group of nurses.Uncertainty increased for some family members whenthey were unsure of the health care provider’s identityor scope of responsibility within the staff or hospitalhierarchy. One family member commented:“it would be nice to have a nametag or RN or JPor whatever, whatever their name is.. .1 wonderwho they are, what they’re objectives are...”Information from health care providers played amajor role in modifying the uncertainty experienced bymany family members. Unanswered questions primarilyrelated to future complications or prognosis. Mostfamily members perceived they had received “lots ofinformation” during the ICU experience. One familymember commented:101“I’m beginning to learn all kinds of medicalknowledge I never knew before, being that you canunderstand some of the equipment and know whatthey’re doing when they are doing it, not reallyknowing, but kind of having an idea what is goingon...And I think that’s because while they’redoing things, they’re giving you information and Ithink that’s really important...”A number of factors influenced the extent to whichfamily members felt they could rely on the informationconveyed by health care providers. All family membersin this study indicated they wanted to hear honest andaccurate information from health care providers. Themajority of family members stated they wanted to hearthe “good news and the bad news”, although responsesindicated that one or two family members avoided askingquestions if they thought the response might benegative. Reports which were inconsistent tended toincrease uncertainty about the reliability ofinformation. The perception of inconsistency seemed toemerge when family members were receiving informationfrom a number of different health care providers. Somefamily members perceived that although the content ofthe information was essentially the same, the tone ofcommunication or degree of optimism varied withdifferent health care providers. The responses oftwo family members reflect this perception:“the doctors would come in and say you’re makinglot of progress...and another one would come inoh, there’s not much change, they might be talkingabout relatively the same thing its just that itseems one person sees it different from anotherI don’t quite know what, who I should reallybelieve”102“this doctor said, its almost like he said thesame things that the doctor said yesterday onlyhe looks... I don’t know maybe he just looks atthe silver lining, not the clouds and stuff”.The latter family member monitered the patient’sappearance in an attempt to reconcile conflictinginformation:“you know, its like the doctor saying that he’sbetter today and when I look at everything,everything seems to be the same. . . everythinglooks the same and he looks worse so I try tostraighten it out in my own head”The majority of family members indicated theywanted to hear specific information about the patient’streatment or condition. Some family members weredistressed when they perceived information was “glossedover” or the health care provider simply stated “don’tworry” in response to specific questions about thepatient’s treatment or changes in condition. In theseinstances, family members felt their right to fulldisclosure of information had not been acknowledged.Family members relied on physicians to providethem with information about the patient’s condition,treatment plan, and prognosis. In contrast, familymembers relied on nurses to provide them withinformation on the patient’s current status, changes,procedures and the daily treatment plan. Most familymembers perceived that information was offeredfreely and regularly by medical and nursing staff.The following comments by two family members reflect103this perception:“whenever anybody comes in they usually explain tomy father or to us what they are doing.. .itsalmost like they’re teaching a class on the side”“the doctor came over and introduced himself andwondered if we had spoken to any of the staff thatday and he was just bring us up to date and Ithought that was really great you know, that hecame over to us without us having to go search himout”Although most family members perceived there was anabundance of information, the occasional family memberexperienced uncertainty which primarily seemed to berelated to accessing specialists within the ICUsetting. One daughter whose mother was cared for bymultiple specialists stated:“I’m not sure who is in charge of her [thepatient] they don’t tell you which specialty theyare with and that makes it difficult as there area number of them...so its difficult to getquestions answered”Family members also depended on health careproviders for support. Support for many family membersmeant being made to feel welcome and “involved”. Thismeant they were free to ask questions, had frequentaccess to the patient, and were considered an importantpart of the patient’s illness experience by health careproviders. The following responses made by differentfamily members of ICU patient illustrate the importanceof this involvement:“making us feel comfortable to be close to him andnot saying don’t touch this or that, its verysupportive...making us feel like we’re notintruding, not in her working space, and we havea right to be here and we feel welcome”104“I realized I was involved and I could ask themalmost anything. . . and I thought that was good...I don’t feel totally as if I’m somebody whocomes in now and then. .1 have some understandingof what is going on and what the plan is”The family members relied on nurses to facilitateaccess to the patient. The majority of family membersexperienced conflict between their desire to be withthe patient and not “bothering” health care providerswho were providing essential care to the patient. Somefamily members felt uncomfortable using the intercomor phone to obtain access to the ICU. Uncertaintyabout the patient’s condition tended to increase whenfamily member’s perceived they had been waiting anunduly long time or if they had been “forgotten” in thewaiting room.Locatinci resources.In discussing the final factor about theenvironment or system of care, almost all the familymembers in the study experienced uncertainty related tolocating resources in the unfamiliar health careenvironment. Receiving an orientation to the physicallayout of the hospital seemed to minimize uncertaintyfor some family members. Some of these family memberswere not sure how to find reasonably inexpensive andaccessible facilities to eat, sleep or park, or whereto turn to for spiritual or emotional support. Othersappeared hesitant to ask for help or information.105Some family members relied heavily on friends andfamily to help them meet practical concerns such astransportation or childcare or for emotional support.Those family members who came from large families orclose—knit communities commented on the importance ofthis support. One family member demonstrated relianceupon support from family members which seemed to berelated to his cultural background. He perceived hecould count on “extended family”, who were “flying infrom all over the globe”, to help him with future careof his mother as long as necessary.Particularly striking were situations in whichfamily members had to relocate to be near their familymember. These family members experienced uncertaintyrelated to an unfamiliar hospital environment and city.In addition, some family members spoke of “missingtheir usual family and friends”. One family member whowas from a small town and alone in the city stated :“if I didn’t have a place to stay, what would I do,sleep on a park bench?...the first few days I was soscared, scared to walk to the bus stop, scared to geton the bus...”.Family Member FunctioningThe third and final major theme identified wasfamily member functioning. Family members’ responsesrevealed that all family members experienceddisruptions in family roles, responsibilities and106functions in response to the critical illness of afamily member. Common factors in the theme of familymember functioning which related to uncertainty were:physical and emotional responses, supporting thepatient, supporting family members, role conflict, andan uncertain future.Physical and emotional responses.The subjects experienced a wide range of physicaland emotional responses to the stress of having afamily member in the ICU. A number of family membersspoke of experiencing a state of disbelief. One familymember commented: “I dwell between the reality of itand the unreality”. Emotional responses primarilyincluded worry, anxiety, fear, helplessness, confusionand despair. Associated physical responses includedexhaustion, gastrointestinal upset, nervous tension,and difficulty sleeping or eating. Family membersworried about the impact of the illness on their ownphysical and emotional health. Some family memberswere not sure they could keep going to support thepatient and other family members. The daughter of oneof the ICU patients stated “I just about passed out, Ihaven’t had that before and I’m thinking I’ve got tokeep my own health, so many people depend on me”.Although most of the preceding responses reflecta negative appraisal, some family members spoke of107feeling hope. In particular, they expressed the beliefthat a positive outcome was possible.Supporting the patient.All family members in the study perceived theirrole as protecting and supporting the patient. Personalneeds and concerns were submerged as family membersfocused all their energies and concern on the patient.Family members were primarily concerned with “beingthere” for the patient. One family member, speaking onbehalf of his family, stated that just being there “putus at ease, to know we’re in a position of control orat least know we’re doing all we can”. Family membersexperienced less uncertainty about performing this rolewhen, as described previously, they were made to feelwelcome and “involved”.Family members also viewed an important part oftheir role in supporting the patient was to protectthe patient. Family members perceived uncertainty aboutthe patient’s ability to cope with the impact of theillness. The family members made every effort toprotect their ICU patient from information or decisionswhich might be upsetting. The family members spoke of“being strong, controlling emotions, and communicatingan optimistic outlook” to the patient. Some familymembers experienced a sense of helplessness aboutprotecting the patient when they perceived the patientmight be in pain or distress.108Supporting family members.Subject responses indicated that the threatenedpotential loss of a member impacted on all members ofthe family. Subjects talked about disrupted homeroutines, the emotions of other family members, andshifting family responsibilities. Some subjectsexperienced uncertainty about the impact of the illnesson the physical and emotional health of other familymembers, particularly children. Others experienceduncertainty about coimuunicating information which theydid not fully comprehend at times to other familymembers. The subjects varied in their ability toextend their support beyond their ICU patient toinclude other family members.Role conflict.Family members’ responses indicated that most ofthe family members experienced role conflict as theytried to balance multiple roles such as going to work,supporting the patient, supporting other familymembers, and meeting their own needs. Most familymembers experienced doubts about leaving the patient tofulfill other responsibilities. Family members wereafraid that the patient might not survive or might befrightened if they awoke in the ICU environment. Therole conflict experienced by one of the family membersis reflected in the following comment:109“when I’m here I think about the kids, and whenI’m with the kids, I think I should be next toher. .. . I hate to think that there’s no one aroundher when she becomes somewhat aware”Uncertain futureFamily members varied considerably in theirability to project the impact of an uncertain future.Some family members spoke of “not being able to predictthe future”, while others spent considerable timeanticipating changes that might be required in theirown life and by the family as a whole. Family members’uncertainty about the impact of the illness on theirfuture seemed to be related to their role and thepatient’s role in the family unit. For example, thefamily members who had been primary caregivers to thepatient prior to the ICU admission were not sure theywould be able to care for the patient in the future.One family member whose husband was self—employed wasparticularly concerned about the financial impact ofpotential long-term disability.Most family members talked about placing their“lives on hold” for the present. Not being able topredict the future impacted on the ability of familymembers to make decisions for themselves or the familyas a whole. Some family members perceived uncertaintyabout making major decisions without the input of thehospitalized family member. Other family membersperceived uncertainty about having to take over110shifting responsibilities. In general, only the mostessential decisions or changes had been made atthe time of the interview.SummaryA description of the characteristics of the sampleand the findings of the study has been provided in thischapter. First, demographic characteristics of thefamily member sample and the associated ICU patientswere reported. Findings related to each of the threeresearch questions were also presented. In the chapterto follow, the findings which have been presented willbe discussed in relation to the theoretical framework,research studies, and problems inherent with the studymethods.111CHAPTER FIVEDiscussion of FindingsIntroductionThe findings of the present study, representingfamily members’ perceptions of uncertainty during theICU experience, are discussed in relation to thetheoretical framework, other research studies andproblems related to the study methods. The discussionconsists of five sections. In the first section,characteristics of the sample are discussed. The secondsection addresses findings related to the level ofuncertainty perceived by family members. Therelationship between illness severity and uncertaintyis discussed in the third section. This is followed bya discussion of the factors within the ICU experiencewhich influenced perceptions of uncertainty. Thechapter concludes with a discussion of the familymembers’ appraisals of uncertainty.Characteristics of the SampleThe sample, with respect to age, gender, andprevious ICU experience, appears representative of thetypical sample accessed in the majority of family needsstudies. The sample was predominately female (63.3%),had experience in the ICU setting (63.3%), andreflected a wide distribution of subjects’ ages ( =47.1, range = 29 — 73 years).112The study sample appears dissimilar from previousfamily needs research samples with respect to the levelof education and relationship to patient. Almost half(48.7%) of the study sample was represented by spouses,while the category of parents was quite small (13.4%).It is difficult to explain this finding as no detailswere available to the investigator on the reasons whysome family members chose or did not choose toparticipate in the study. The investigator notedduring discussion with family members that a number offamilies selected the family member to participate whowas viewed as “closest to the family member” and/or wasthe family spokesperson. In addition, the family memberwho “needed to talk” may have been encouraged toparticipate in the study. It may be that this personis typically the spouse of the ICU patient.The educational level of the sample was high.Eighteen family members (60.0%) of the sample hadattained an education at the university or collegelevel. As the education level of those family memberswho did not participate is unknown, it is difficult toknow if education level influenced participation in thestudy. The majority of the subjects were employed(80%). This finding is consistent with the mean age ofthe sample ( = 47.1 years).Subjects in this study were primarily Caucasiandespite an attempt to recruit subjects from different113cultures. The responses of one family member who hademigrated to Canada a number of years ago suggestedsome differences in the dimension of culture. Overall,however the sample was very limited from a culturalperspective. It is possible the criterion of fluencyin English may have limited recruitment of familymembers from other cultures. The subjects who were bornoutside of English speaking countries consideredEnglish to be their primary language.Many family members in the study sample (40%) hadrelocated on a temporary or permanent basis from theirhometown to the Vancouver region. Five subjects (2 0%)spent considerable time travelling between theirhometown and the hospital.The patient sample in this study is representativeof the typical ICU patient population at Hospital B.ICU statistics at Hospital B, for the period from April1, 1992 to March 31, 1993, indicate patients’ ages(n = 657) ranged from 16 — 92 years of age ( = 52,Q not reported). These statistics also indicate a widevariation in the types of medical diagnoses admitted tothe general medical—surgical ICU. No statistics wereavailable from Hospital A.The Perceived Level of UncertaintyThis section will discuss the perceived level ofuncertainty for family members of critically ill adultICU patients and possible reasons for variations in114perceived uncertainty. It concludes with a discussionof the uncertainty instrument in terms of reliabilityand difficulties which were encountered with datacollection.Total Uncertainty ScoresThis sample of family members of adult criticallyill ICU patients perceived levels of uncertainty thatranged from 53 - 119 ( = 86.8, = 16.3). Subj ectsscores on the PPUS-FM appear to reflect moderately highlevels of uncertainty compared to normative data(Mishel & Epstein, 1990). The range and standarddeviation of family members’ scores reflect widevariability in the measured level of uncertainty.It appears subjects’ scores in this study fallsomewhere in between the mean uncertainty scoresperceived in the studies reported by Mishel & Epstein(1990) and McDonald (1992). Mishel & Epstein (1990),reported 42 parents of critically ill newbornsperceived mean uncertainty scores of 76.3 ( = 20.4)as measured by the 31 item Parent Perception ofUncertainty Scale (PPUS). In contrast, McDonald(1992) reported family members of critically ill adultbrain-injured patients in the ICU perceived high levelsof uncertainty as measured by the 31 item PPUS-FM= 98.2, = 12.26, range = 61 to 116).One factor that may explain the moderately highlevels of uncertainty in this study may be related to115the events in the critical care illness experiencewhich are novel and unfamiliar. Mishel (1988) suggestsfamiliarity with the health care environment isdeveloped over time and through experience in asetting. The level of uncertainty in the present studywas measured within the first 7 days of the ICUexperience, with the exception of 3 subjects whereuncertainty was measured at 8 or 9 days. Studyfindings indicated that uncertainty was not correlatedwith previous ICU experience. While some subjectsreported previous ICU experience was very helpful,other subjects perceived the current ICU settings asalien to their past ICU experiences.Another factor which may have contributed to themoderately high levels of uncertainty may be theintense emotional states experienced by family members.Similar to other research studies which have studiedfamily members’ perceptions of the critical careillness experience (McDonald, 1992; Mirr, 1991; Titler,Cohen, & Craft, 1991), family members in the presentstudy experienced emotions such as disbelief, anxiety,helplessness, and fear. High threat situations canimpair the individual’s ability to process informationwhich may ultimately elicit uncertainty (Mishel, 1988).As noted in Mishel’s (1988) theory, another reasonfor the uncertainty may be a function of theincongruence between what is expected and what is116experienced. Family members may have initially held theview that a positive outcome was possible (McClowry,1992). However, as time went on family memberswho were interviewed (n = 12) acknowledged that thepatient’s illness situation was fraught withunpredictable complications and setbacks. Uncertaintymay have been generated as family members realizedthe patient’s situation may not be readily cured, andthus expectations and experience were incongruent.The moderately high levels of uncertainty may alsohave been related to the subjects’ difficulty ininterpreting or making sense of the patient’s ambiguoussymptoms or complications. Many of the patients in thestudy were unconscious or unable to communicate whichmay have made it difficult for family members makesense of the patient’s condition. Interviewedsubjects’ reports also suggest that moderately highlevels of uncertainty may have evolved when familymembers received information which conflicted withtheir view of the patient’s appearance or condition.The moderately high levels of uncertainty may havealso been a function of how aware the family members inthis study were of the clinical uncertainty associatedwith illness. Davis (1960) states that “as in allapplied fields of endeavour, medicine deals inprobabilities rather than absolutes” (p. 43). Clinicaluncertainty is related to actual difficulties in117determining diagnosis and prognosis (McIntosh, 1974).Many of the subjects who participated in theexploratory interviews acknowledged the inability ofmedicine to provide all the answers. Comments such as“I don’t know but then nobody knows . . . . the questions Iwant answered [refers to outcome of multiple injuries]they can’t answer yet” illustrate family members’awareness of the clinical uncertainty associated withcritical illness.An additional explanation for the moderately highlevels of uncertainty may be related to the significantnumber of spouses (48.7%) in the sample. There wasa statistically significant positive relationshipbetween spouses and the uncertainty factor of lack ofclarity (rpbi = .39, p = .035). Although all subjectsin the study acknowledged a close relationship to theill family member, it is possible the high degreeof commitment perceived by most spouses may havecontributed to high levels of uncertainty and threat.Although the levels of uncertainty in the presentstudy were moderately high, they were significantlylower than those obtained in McDonald’s (1990) studywhich measured levels of uncertainty in family membersof critically ill brain-injured patients (N = 98.2,= 12.26). The differences in levels of uncertaintymay be related to family members’ perceptions of thethe adequacy of information. Most subjects in the118present study perceived that information was frequentlyoffered and that they were “well—informed”. Incontrast, subjects in McDonald’s study perceived theyreceived “inadequate information”. It is not clearif the differences in perceptions in the two studiesare related to the acknowledged lack of informationassociated with acute brain injury resulting inambiguous situations, or differences in the manner inwhich information was communicated.Although the uncertainty scores were fairly evenlydistributed above and below the mean ( = 86.8,SD = 16.26), there was variability in the levels ofuncertainty perceived by some subjects in the presentstudy. One reason for variation in the levels ofuncertainty may be a function of the degree of socialsupport perceived by family members. Mishel (1988)indicates supportive persons are essential foremotional and practical support and to facilitate thesharing of information about the unfamiliar illnessexperience. Over 40% of the family member sample hadrelocated to be near the patient in Vancouver. Familymembers’ responses to the exploratory interviewsindicated that some family members were isolated fromtheir usual support persons and experienced difficultyin establishing links to tap into available spiritual,financial or shelter resources. The lack of availablesocial support may have generated high levels of119uncertainty for these family members. On the otherhand, other family members who spoke of their relianceon family and friends to help them “get through theICU experience” may have perceived lower levels ofuncertainty.Another possible reason for the variation inlevels of uncertainty may be related to the degreeto which family members perceive they can rely onor trust health care providers. Mishel & Braden (1987)report that trust and confidence in the health careprovider is one of the major means of reducing levelsof uncertainty. The majority of family members whowere interviewed expressed a high level of confidencein the “expert care” provided by ICU staff. However, afew family members who perceived they could not rely onhealth care providers may have perceived higher levelsof uncertainty.The variability in uncertainty scores may havebeen related to the educational level of the sample. Astatistically significant positive correlation wasfound between the factor of unpredictability and familymembers who had less than Grade 12 education (rpbi =.39, p = .033). This suggests family members in thestudy who had less education perceived more uncertaintyrelated to an inability to predict the course ofillness or outcome. This finding supported previousstudies (Mishel 1981, 1984) which found individuals120with lower levels of education perceive higher levelsof uncertainty related to illness and the system ofcare. The findings of this study should be viewed withcaution, however as the high education level of mostsubjects in the study sample may have skewed thedistribution.A final reason for the variability in uncertaintylevels may have been an actual or perceived lack ofinformation. According to Mishel (1990), there is anexpectation in the Western world that “the cause of theillness can be determined with certainty and theillness can be controlled” (p. 257). The interviewsrevealed that some family members may have perceiveduncertainty when physicians had difficulty providinga definitive diagnosis or prognosis. In addition,some family members may have experienced difficultycomprehending information which was provided. Thismay have been related to their previously discussedintense emotional states or the nature of theinformation. One family member who perceived shereceived inconsistent reports from multiple specialistsstated: “I don’t quite know what, who I should reallybelieve”. Some family members members who received“bad news” may not have acknowledged this information.According to Lazarus & Folkman (1984) paying selectiveattention to comfirmatory information is a commonresponse to threatening information.121Four Factor Uncertainty ScoresAccording to the item means of each of the fourfactors of the PPUS-FM, family members’ perceptions ofuncertainty were primarily related to unpredictability.This was followed by ambiguity, lack of information,and finally, lack of clarity. McDonald (1992) alsoreported that unpredictability reflected the highestlevel of uncertainty, Comparison of this study withMcDonald (1992) is difficult because subscales scoreswere reported as percentage means.The item means with higher scores suggested thatfamily members perceived uncertainty related to theirinability to predict or control the patient’s illnessor treatment situation or eventual outcome. Item meanswith lower scores generated the least uncertainty forfamily members in the study. The low scores on theseitems suggested that most family members perceived theyreceived adequate, understandable information and thatthey could rely on health care providers during the ICUexperience.Discussion of the PPUS-FMThe PPUS-FM had an internal consistency alphaco—efficient of .87 reflecting high reliability.The four factors had internal consistencies rangingfrom .55 to .87 indicating medium reliability. Thisfinding is consistent with four other studies whichused the PPUS-FM and determined coefficients of .71 to122.91 and internal consistencies which ranged from .55 to.89. Thus, there is reasonable confidence in thereliability of the scales. However, Factor 3 (lack ofinformation) and Factor 4 (unpredictability) have lowalphas which may be a reflection of the small number ofitems in each of these factors.Some subjects experienced difficulties ininterpreting some of the items in the uncertaintyscale. Subjects found it difficult to respond toitems which referred to both doctors and nurses in thesame item. In addition, the term doctor was ambiguousas it could mean resident, interne, specialist, or ICUphysician. Some subjects also found it difficult todisagree with a negatively worded item. Finally,subjects’ comments may indicate one or two items werenot representative of the uncertainties experienced bythis sample of family members.The accuracy of the uncertainty scale inconditions of high threat may be questionable. Theinvestigator noted that some family members foundsome of the items to be threatening. Consequently,some of these family members responded to some itemsaccording to what they wished to believe as opposed towhat they actually felt or perceived. Mishel (1988)indicates that illusions, or beliefs constructed out ofuncertainty, may help individuals to maintain anopportunity appraisal. It may be that some family123members misinterpreted some items to maintain theirfragile optimism.Uncertainty and Illness SeverityThe family members perceived high levels ofseverity for their critically ill ICU patients with amean score of 83.8 mm and a range from 34 mm to 100mm. Findings revealed that there was no statisticallysignificant relationship between perceived level ofuncertainty and perceived level of illness severity.This finding supports the results of Mishel et al.(1984) who found no relationship between uncertaintyand perceived illness severity in women diagnosed withgynecological cancer.The results clearly indicate that the majority offamily members perceived the ICU patient to be severelyill. It was therefore surprising to the investigatorthat no relationship was found between perceivedillness severity and uncertainty. The finding may beattributed to a conceptual difficulty in explaininghow appraisal is interrelated with illness severity anduncertainty. The level of illness severity may bevary with the type of appraisal as opposed to beingrelated to uncertainty. For example, family memberswho perceive an opportunity appraisal may perceive thepatient is less severely ill. However, the levelof uncertainty may be low, moderate or high. Thisconclusion should be viewed with caution as the sample124was very positively skewed with respect to illnessseverity.It is interesting to note there is a negativecorrelation between Factor II (Lack of Clarity),Factor III (Lack of Information) and perceived illnessseverity. Similar to Mishel (1983), these findingsimply that with more information and understandingof the illness and system of care, judged seriousnessof illness increases. This suggests that a lack ofinformation may allow family members to maintain amore optimistic, although possibly less accurate,appraisal of the illness situation.Family Members’ Perceptions of UncertaintyThe fourth section of the discussion of findingsrelates to the factors which influenced family members’perceptions of uncertainty during the ICU experience.Numerous factors related to uncertainty were identifiedthrough analysis of the exploratory interviews. Manyof these factors were highly individualized accordingto each family members’ unique perception of theillness situation. However, three common themesemerged from the family members’ responses whichwere: the illness/treatment situation, the environmentand system of care, and family member functioning (seeTable XI, p. 90). The first two themes fit withinthe Mishel (1988) theory of Uncertainty in Illness.125However, the family functioning theme is not consideredwithin this theory.The themes and the factors which emerged in thepresent study were very similar to the uncertaintythemes identified by Turner et al. (1990) who exploredparents’ perceptions of uncertainty in the pediatricICU. These results suggest that overall family membersexperience many similiar uncertainties during the firstweek of the ICU experience, despite differences in theage of the patient.Role kmbicruity and Environmental UncertaintyThere were some differences in the areas of roleambiguity and environmental uncertainty. Turner et al.(1990) found that parents perceived a high degree ofuncertainty with respect to the physical environmentand role performance in the ICU. In contrast, familymembers in the present study perceived minimaluncertainty in these areas. The subjects in bothstudies perceived a need to protect the ill familymember. However, this need may have been felt moreintensely by parents of critically ill children whoperceived less confidence in the competency of healthproviders. In contrast, the majority of subjects inthe present study perceived a high degree of confidencein the ability of health care providers to care fortheir ICU patient. This perception may have resultedin less environmental or role performance uncertainty.126Cocrnitive Schema or MaFamily members experienced difficulty in creatinga cognitive schema or map by which they could interpretthe illness or treatment situation (Mishel, 1988).Unexpected complications, relapses and changes incondition resulted in an unreliable and ambiguoussymptom pattern which was difficult to interpret.Comaroff & Maguire (1981) state that persons who arein the hospital “seek to systemize information andconstruct norms against which to guage their presentstate and future prospects” (p. 117). Family membersin this study used expected stages, time frames,and their expectations of everyday norms to guage thepatient’s progress. Uncertainty resulted when thepatient’s progress was not congruent with the normsexpected by the family member. In addition to theirmonitoring of the patient’s progress, family members’were also preoccupied with knowing the cause of thepatient’s condition. These behaviours may have been anattempt to control or create the illusion of controlover the patient’s illness/treatment situation. Hilton(1988) indicates “a causal search may be an effort topredict, understand, and control threat” (p. 233).Technology and ProceduresThe family members’ perception of minimaluncertainty related to technology or the physicalenvironment may be related to their perception of127receiving adequate information. A comment made by oneof the family members supports this conclusion: “it’sall quite, quite clear [refers to ICU environment] theytell us everything...they’re always explainingprocedures as they do them”. Numerous studies offamily members’ concerns in the ICU have identifiedthat family members desire more information (Daley,1984; FitzGerald, 1990; McDonald, 1992; Mirr, 1991,O’Neill Norris & Grove, 1986). Similar to conclusionsfound by Rukholm et al. (1991), the present studysuggests it is now becoming common practice for nursesto explain the physical environment to family membersat the bedside.Social SuortMishel (1988) indicates that social support canprovide assistance which reduces uncertainty. It isinteresting to note that while some family memberscommented on the importance of support from familyand friends, others did not seem to acknowledge thisarea. Although some family members had benefited frominteractions with pastoral care or the social worker,others perceived uncertainty related to accessingresources in the complex system of care. It may bethat health care providers who were focusing on theneeds of the patient may not have provided the familymember with information in this area. In addition,some family members who were “in limbo” following the128impact of life-threatening illness may have beenpowerless to mobilise resources (Jillings, 1990).Finally, similar to family needs studies (Daley, 1984;Molter, 1979; O’Neill Norris, 1986), some familymembers may have viewed their needs as minor comparedto patient needs. Family members who were reluctantto “bother” health care providers were concerned thatthey might be detracting from necessary patient care.Relationship with Health Care ProvidersThe family member’s relationship with health careproviders was critical to reducing perceptions ofuncertainty about the environment and system of care.Most family members expressed great confidence ortrust in the “expert care” provided by health careproviders in the ICU. According to Washington (1990),trust is “seen as only possible in familiarenvironments” (p. 418). Therefore, the level of trustperceived by most family members was a surprisingfinding.It is possible family members perceived lessuncertainty as they felt they could trust the actionsor words of ICU staff because they viewed the ICU staffas credible authorities (Mishel, 1988). Establishmentof trust may also have been fostered by the observationof a caring and empathetic approach which was extendedto family members as well as patients. Comaroff &Maguire (1981) note that “the hospital specialist may129become the object of optimistic faith” (p. 117). It isnot surprising that family members were sometimesreluctant to express concerns about the competency ofhealth care providers to the investigator. Familymembers’ faith or belief in the health care providerswas integral to maintaining their hope for a positiveoutcome. The majority of family members tended tominimize or excuse situations in which they doubted theactions or words of ICU staff.Family Member FunctioningMany of the factors in the category of familymember functioning, with the exception of the roleambiguity previously discussed, bear some similarity tothe family system uncertainty reported by Turner et al.(1990). However, as aspects of family memberuncertainty have received minimal investigation,differences which existed between the two studies willbe highlighted.In contrast to the caregiver role perceived byparents in the Turner et al. (1990) study, familymembers in the present study were more concerned withprotecting and supporting the patient. Family memberuncertainty evolved when family members were unable tocarry out this role due to conflicting role demands orfactors within the ICU setting. Family members inboth studies experienced helplessness and uncertaintyin situations where they were unable to comfort or130interact with the ICU patient. The importance of theprotective and supportive role was particularly evidentin the responses of one family member in the presentstudy who represented a different culture. Hebelieved the support of the extended family mightbe the factor which promoted a positive outcome forthe patient. This finding suggests the culturaldimension related to family member uncertainty shouldbe explored in greater depth.The concept of family members protecting andsupporting the critically ill patient is not unique.Mishel & Murdaugh (1987) noted partners caring forpatients prior to heart transplant blocked their ownneeds and “pledged themselves to the welfare of thepatient” (p. 334). In addition to monitoring thepatient’s physiological state, partners protected thepatient by filtering information which might beupsetting. Family members in the present studyperformed similar protective actions.Family members experienced uncertainty associatedwith making proxy treatment decisions. Family memberswere concerned about their ability to make decisions inthe best interest of the patient, particularly as itrelates to quality of life. Similar to Mirr (1991),family members experienced uncertainty related tomaking proxy treatment decisions when there was a lackof information about eventual prognosis. Turner et131al. (1990) did not report uncertainty related to proxydecision making. It is possible parents were morecomfortable in the proxy decision maker role thanfamily members of adult ICU patients. Family membersexperienced uncertainty when they made proxy decisionswhich could potentially prolong patient suffering. Itis possible this activity conflicted with their role toprotect and support the ICU patient.Family members in both studies perceiveduncertainty related to their ability to support otherfamily members. Turner et al. (1990) noted thatparents were concerned about how well they cared forchildren at home. Family members in this studywho were parents also expressed this uncertainty.However, as family members played multiple diverseroles, such as adult children or siblings, theiruncertainty was a function of their role in the family.For example, one adult son whose mother was criticallyill was predominately concerned about supporting hiselderly father. Given that all members of a family areimpacted by the illness of a member (Jillings, 1990),it is not surprising that many of the family membersfelt a need to support one another. Their ability todo so may have varied because of the “tendancy offamily members to focus all their energy and concern onthe critically ill patient” (McClowry, 1992, p. 561).Both Turner et al. (1990) and the subjects in the132present study did experience role conflict betweentheir need to be with the patient and their need toperform other roles. Turner et al. suggested that theparents’ role conflict was related to their doubts thathealth care providers could adequately care for thechild in their abscence. However, the family members’role conflict appeared to be related to their need tosupport the adult patient. This need is possibly aa reflection of the intense commitment towards theill patient which was reflected in all the familymember interviews. McClowry (1992) suggests familymembers who feel intense cohesion or love and affectionfor one another are highly motivated to support thecritically ill patient.A final aspect of family member uncertaintyinvolved predicting and managing role changes whichwere necessitated by the absence of the ill familymembers. Most family members who were interviewedhad put their “lives on hold” and were making onlythe most essential changes. However, some familymembers in this study perceived uncertainty related toanticipating role changes or actually taking overessential roles traditionally performed by the illfamily member. In contrast, Turner et al. (1990)perceived less uncertainty in this area. Althoughparents anticipated future changes, it is doubtful133they would have to take over any major responsibilitiesfrom their ill children.Family Members’ Appraisal of UncertaintyMishel (1988) notes uncertainty is a neutral stateuntil appraisal occurs. Given the importance ofappraisal in determining the family members’ perceptionof uncertainty, this final section will briefly discusskey factors which influenced family members’ appraisalof uncertainty during the ICU experience.Each family member’s appraisal of uncertaintywas related to individual variables such as pastillness experiences, developmental stage, personalbeliefs and commitments. In addition to these uniquevariables, the responses of family members revealeda number of common factors which appeared to influenceappraisal during the ICU experience.The family members’ need to maintain a hopefulor opportunity appraisal was consistent with the familyneeds studies (Leske,1986; Molter, 1979; Daley, 1984).Miller (1991) defines hope as “a state of beingcharacterized by an anticipation for a continued goodstate, an improved state, or a release from a perceivedentrapment (p.307). The family members in the presentstudy primarily focused on the specific hope that thepatient would survive, although two family membersexpressed hope that the patient would not suffer.The process of illusion, or the construction of134beliefs with a positive outlook (Mishel 1988), may havepermitted some family members to appraise uncertaintyas an opportunity. Some family members believed theexpertise which was present in the ICU in the form ofskilled staff and technology would “pull the patientthrough” the ICU experience. The belief that God or ahigher being was in charge of the situation promotedhope for other family members. A few family membersbelieved their own inner strength would in some waysupport the patient through the experience. Finally,most family members held the belief that a positiveoutcome was possible.The belief in a positive outcome was most evidentin family members who were interviewed within the firstfew days of the patient’s admission to ICU. In somecases, this belief appeared to slowly disintegrateover time making it difficult for the family memberto maintain an opportunity appraisal. McClowry (1992)suggests family members initially hold the view thatthe illness is time limited and may expect a completecure. This view is initially protective, but may bedifficult to maintain as the family member develops amore realistic appraisal of the situation.A number of family members who were interviewedperceived that uncertainty was dangerous resulting ina threat appraisal. This type of appraisal wasparticularly evident in family members of patients who135had been chronically ill prior to the admission to theICU. One elderly spouse stated: “ this [the ICUexperience) is just one piece of being sick for manyyears...I’m worn out, I can’t take much more”. Familymembers of ICU patients who had been chronically illmay have had previous negative experiences with illnesswhich contributed to a threat appraisal. In addition,these family members may have realized that fullrecovery was not possible. These conclusions aresupported by Mishel & Murdaugh (1987) who reportedthat, over time, partners of heart transplant patientsgradually realized that returning to normal was notpossible.Other family members may have perceived a threatappraisal related to their sense of helplessness orlack of control over the situation. For the most part,family members’ responses indicated that mostfamily members vacillated between an opportunityand a threat appraisal. One family member stated:“it makes it confusing...to be so up and then sodown, I mean I’d rather have the hope but if itgoes up and down...like tomorrow if we have adifferent doctor and its way worse again...Ifound that really hard to bounce up and down”In the appraisal coping section of the Mishel(1988) theory of Uncertainty in Illness, individualscan only chose a danger or opportunity appraisal. Thus,the model does not account for the fluctuations inappraisal that were evident in family members’ accounts136of their experience. Mishel (1990) notes the theoryneeds reformulation to reflect the changes in appraisalwhich occur over time.SummaryThe findings of the study were discussed inrelation to the Mishel’s (1988) theory of Uncertaintyin Illness and other research studies. First, thecharacteristics of the sample were discussed. Then,the level of uncertainty perceived by the familymembers and problems inherent with the uncertaintyinstrument and study methods were reviewed. Thiswas followed by a discussion of the factors whichinfluenced family members’ perceptions and appraisal ofuncertainty during the ICU experience. The finalchapter will present a summary of the findings,conclusions, and implications that arise from thethe study.137CHAPTER SIXSummary, Conclusions and ImplicationsIntroductionThis study was designed to answer questionsregarding the level of uncertainty perceived by familymembers of critically ill patients at one point intime during the first week of the ICU experience. Thestudy also sought to describe the relationship betweenthe family members’ perceived level of uncertainty andthe level of illness severity. In addition, familymembers’ perceptions of factors which were related touncertainty were explored. An overview of the studyand its conclusions are presented in this chapter.This is followed by discussion of the studyimplications for nursing practice, education,and research.Summary of the StudyThis study was undertaken to describe andexplore family members’ perceptions of uncertaintyand illness severity during the ICU experience. Theimpetus for the study came from the investigator’sobservations that family members experienced a highlevel of stress which may be related to uncertaintywhich evolved in response to the critical illnessexperience and the ICU environment. The findings ofstudies which investigated family needs and stressorsduring the critical care experience suggested138uncertainty might be a significant phenomenon whichinfluences the perceptions of family members. Thereare, however, a significant lack of studies which haveinvestigated family members’ subjective perceptions,particularly in the area of uncertainty. It wasrecognized that a study was needed which would providehealth care professionals with a better understandingof the uncertainty experienced by family membersduring the ICU experience.This descriptive correlational study was conductedin two large tertiary referral hospitals located inVancouver, British Columbia. Data were collectedfrom a convenience sample of one family member for eachof 30 critically ill patients who met the samplecriteria. Subjects were contacted by the AssistantHead Nurses of the study ICUs according to a writtenprotocol developed by the investigator. The subjectscompleted the Parents Perception of Uncertaintyin Illness Scale - Family Member Form (PPUS-FM),the Visual Analogue Scale (VAS) to measure illnessseverity, and a demographic information sheet. Inaddition, 12 of the 30 family members wereinterviewed according to a semi—structured interviewguide developed by investigator. A number ofconsiderations were employed to ensure anonymityand confidentiality of the data. Perceptions of139uncertainty and illness severity were measured atone point in time.The age of the family members at the time of thestudy ranged from 29 to 79 years. There were 19females and 11 males. The majority of the familymembers were spouses (48.7%) or adult children of theICU patient (30%). The family members had a widevariety of occupations which were primarily in theprofessional, administrative/manager, or homemakercategories. Most of the family members were educatedat the university or college level (60.0%). Thesample of family members demonstrated limitedcultural diversity as the majority of subjects wereCaucasian, had been in Canada at least 20 years, andconsidered English to be their primary language.The age of the associated ICU patients rangedfrom 23 - 83 years. Twenty of the ICU patients weremale and 10 were female. The number of days thepatient had been in the ICU at the time of datacollection ranged from 2 to 9 days. The vastmajority of patients had multiple diagnoses andcomplications.The Uncertainty in Illness theory of Mishel(1988) served as the theoretical framework for thestudy. According to this theory, the processes ofof uncertainty, appraisal and coping work together todetermine the meaning individuals construct for illness140events. Three variables (stimuli frame, cognitivecapacity, and structure providers) precede uncertaintyand offer the information that is processed by theindividual. The process of appraisal plays a key rolein determining the impact of uncertainty. Uncertaintyevolves when the individual lacks sufficient cues orinformation to adequately appraise the illnesssituation. Uncertainty can be appraised as a dangeror an opportunity. Coping strategies are effortsgenerated in response to the type of appraisal toto manage uncertainty and influence adaptation. Thestudy primarily explored the relationship betweenthe antecedent variables and the family members’perceptions of uncertainty in the ICU experience.Coping was only briefly discussed in relation to theappraisal of uncertainty process.Answers to the three major research questionswere examined using the Mishel (1988) Uncertainty inIllness theory to explore the family members’perceptions of uncertainty and illness severity.Overall, family members of ICU patients perceivedmoderately high levels of uncertainty as measured bythe uncertainty scale. Subjects’ uncertainty scoresfell between the levels of uncertainty reported intwo research studies which addressed uncertaintyin family members of critically ill newborns andcritically ill adult brain-injured patients. The141uncertainty appeared to be generated primarily inresponse to ambiguity and unpredictability of thesituation.Findings demonstrated wide variability in thefamily members’ perceived level of uncertainty. TheMishel (1988) theory of Uncertainty in Illness wasuseful to explain possible reasons for the variationsin levels of uncertainty found in the study sample.The moderately high levels of uncertainty appeared tobe associated with factors such as event familiarity,event congruence, ambiguous symptoms or complications,the subjects’ degree of commitment to the patient,intense emotional states, and the clinical uncertaintyassociated with critical illness. Variations inlevel of uncertainty appeared to be associated withthe amount of social support, the degree of trustestablished with health care providers, educationallevel, and characteristics of the information whichwas provided and received.Findings also indicated that there was nostatistically significant relationship betweenuncertainty and illness severity. This finding wasnot expected by the investigator who had expected tofind a positive correlation between uncertainty andillness severity. This finding may be related toa conceptual difficulty in explaining how appraisalis interrelated with illness severity and uncertainty.142The level of illness severity may vary with the typeof appraisal as opposed to being related touncertainty. Additional negative correlations,although not statistically significant, were foundbetween uncertainty factors of lack of clarity and lackof information and severity of illness. This suggestsa lack of information and understanding may be linkedto a more positive appraisal of the illness situation,a finding which is supported by other research studieswhich have investigated uncertainty. The findingswhich are related to uncertainty and illness severityshould be viewed with caution as the sample was highlypositively skewed with respect to illness severity.Qualitative content analysis of the familymembers’ responses to the exploratory interviewsrevealed a number of factors which were related touncertainty during the ICU experience. Many ofthese factors were highly individualized for eachfamily member according to their unique perceptionsand appraisals of the situation. However, three commonthemes and associated factors were identified whichsuggests family members experience similaruncertainties during the ICU experience.Factors related to uncertainty with the firstmajor theme, the illness/treatment situation, seemedto be primarily related to the unpredictability of thepatient’s condition, illness, or future outcome.143Uncertainty appeared linked to the family members’perception of the degree to which the situation wasunder control. Unpredictable complications, changes incondition, lack of medical certainty about the illnessor treatment and deviations from expected normsincreased the uncertainty perceived related to theillness/treatment situation.The environment and system of care constituted thesecond major theme related to the family members’perceptions of uncertainty. Contrary to that whichwas expected by the investigator, subjects experiencedminimal uncertainty related to the unfamiliar routines,procedures or technology. Perceptions of uncertaintywithin this setting seemed to be modified by thebelief that the patient was receiving expert care,faith in technology and the supportive, caringapproach of health care providers. A major factorassociated with perceptions of uncertainty seemed tobe the extent to which family members could rely onor trust the actions or words of health care providers.In addition, a number of family members perceiveduncertainty related to establishing links topractical, emotional and spiritual resources.Family member functioning was the third andfinal theme related to family members’ perceptions ofuncertainty. Uncertainty was primarily generated inrelation to the family members’ roles in supporting144the patient and other family members, role conflict andchanging roles. A unique finding was the uncertaintyfamily members experienced in relation to their roleof making treatment decisions for the patient. Furtherresearch is required to explicate this finding.The responses revealed that family membersfluctuate between an opportunity or hopeful appraisaland a danger appraisal. Positive beliefs were criticalto maintain an opportunity appraisal. A dangerappraisal seemed to be related to previous negativeexperiences, intense emotions, and lack of progressover time.The Mishel (1988) theory of Uncertainty in Illnesswas found to be appropriate to study family members’perceptions of uncertainty during the critical careillness experience within the illness/treatmentsituation and environment and system of care themes.The theory needs to be expanded in the areas of familyroles and appraisal over time in order to adequatelyexplain the theme of family member functioning andfluctuations in uncertainty over time.LimitationsThe generalizability of this study’s findings islimited by the small sample size which may havecontributed to the lack of significant correlations.The use of a convenience sampling method, themeasurement of uncertainty at only one point in time,145and restriction of the sample to two ICU settings andto those who can read or write English also limitgeneralizability. It is not known if the familymembers who participated in the study are significantlydifferent from family members who did not participate.Family members may have given socially desirableresponses related to their vulnerability and dependencyon health care providers during the ICU experience. Inaddition, family members’ responses to the uncertaintyscale may not always have been accurate related totheir intense need to give responses which maintained ahopeful appraisal.ConclusionsThe findings of the study suggest some tentativetrends and conclusions:1. Family members of critically ill ICU patientsdescribe many similar factors which are related toperceptions of uncertainty during the illnessexperience.2. Overall, family members perceived moderately highlevels of uncertainty. However, there were widevariations in these levels which may be explainedby the antecedent variables which influenceuncertainty in Mishel’s (1988) Uncertainty inIllness theory.3. Family members’ perceptions of the level ofuncertainty and illness severity do not appear to146be related. This may be a function of therelationship between illness severity and appraisal.4. The appraisal of uncertainty by family members ofICU patients may fluctuate over the illness coursebetween an opportunity and danger appraisal.5. Positive beliefs, such as faith in the expertiseof the health care provider, appear to be majorfactors which are critical to the family members’perceptions of a hope appraisal. Other significantbeliefs which influenced a hope appraisal includedfaith in God or a higher being and belief in apositive outcome.6. Access to the patient appears to be a major factorwhich reduces the uncertainty perceived by familymembers.7. During the ICU experience, family members mayrequire assistance to establish links withemotional, practical and spiritual resources.8. Family members experienced a number of distressingphysical and emotional responses during the ICUexperience which are associated with a dangerappraisal.9. Exploration of family members’ perceptions duringthe ICU experience was perceived to be a positiveexperience by the majority of family members.However, investigators in future studies shouldcontinue to be sensitive to the fact that not all147family members wish to or are emotionally ready toparticipate.ImplicationsAlthough the findings of this study are tentativethey suggest many implications for the provision ofcare to family members of critically ill ICU patients.Implications for nursing practice, education, andresearch are presented in the following sections.In addition, the Mishel (1988) theory of Uncertainty inIllness is discussed in light of this study’s findings.The focus of the discussion is directed towards nurses,however, implications for other health care providersare included as appropriate.Nursing PracticeThe findings suggest that family members ofcritically ill patients perceive similar factors whichare related to uncertainty during the ICU experience.However, there is sufficient evidence to suggest thata number of factors unique to each individual playa significant role in family members’ appraisal ofuncertainty. In addition, although many subjectshad moderately high levels of uncertainty, therewas wide variation in the levels of uncertaintyperceived by family members. Therefore, nurses shouldnot assume that all family members of critically illICU patients experience uncertainty in the same way.There is a need to develop and implement family148assessment tools which allow for quick, individualizedassessment of each family member’s unique situationand perception of uncertainty. Specifically, thesetools should gather information on previous familyillness experiences, cultural beliefs and practices, abrief history of the roles of each family member,demographic data and immediate concerns. Inaddition, assessment should include evaluation ofsocial supports, specifically related to practical,emotional, and spiritual concerns. It is alsoimportant to collect data on how the family wishes toreceive information: what family member(s) shouldreceive the information, what type, how often and fromwhom. The data collected from the assessment could beused to develop a plan of care, which includesinterventions to manage uncertainty. The plan of careshould be validated with the family member and sharedwith other health care providers to ensure consistentimplemention which is congruent with the expectationsof the family member.Nurses need to recognise that the family members’appraisal of uncertainty may fluctuate over time.Therefore, it becomes important to repeat theassessment at regular intervals to determine if thefamily members’ perceptions of uncertainty have changedand if coping strategies are adequate to manage theuncertainty. Nurses should become familiar with the149factors which are common to the development andmanagement of perceptions of uncertainty in most familymembers during the ICU experience. This understandingcould assist nurses to anticipate and manage someof the major factors discussed below which generateuncertainty for family members.The relationship with the health care provider isa major factor which influences the development ofuncertainty. The findings suggest family membersview nurses as important support persons with whomfeelings and concerns can be ventilated and received ina nonjudgemental manner. Family members also counton nurses to provide expert care, information,and access to the patient. These interventions arewithin the realm of all nurses at the bedside and areessential to reducing perceptions of uncertainty.First, it should be recognized that family members’uncertainty is reduced when nurses focus on patientcare needs. Given the intense requirements of theICU patient, it may be useful to assist nurses andother members of the team through implementation of theclinical nurse specialist (CNS) role. The CNS couldassess and provide additional support to manage familymembers’ perceptions of uncertainty.Second, nurses and other health care providers inthe ICU need to acknowledge the importance of therelationship between health care providers and family150members. The findings suggest that family members havea critical need to trust health care providers. Familymembers rely on health care providers to provide expertcare and information within the ICU setting. Inaddition to the provision of information, health careproviders could implement other interventions which maypromote a trust relationship. These may includechanges in practice to facilitate the provision ofconsistent information, access to patients, increasedinterdisciplinary collaboration, increased support andinformation at transition times of discharge ortransfer from the ICU, and a family focus of care.Implementation of any of these interventions should besimultaneously evaluated through research to determinetheir impact on family members’ perceptions andappraisal of uncertainty.Third, it is apparent that family membershave a critical need for consistent information fromhealth care providers. However, the content and mannerin which information is relayed should differ withinthe context of the family members’ appraisal of thesituation. Health care providers must collaborate withthe family member to determine what type of informationis most helpful for them and how they wish to receivethat information. The findings suggest family membersare most interested in receiving consistent, reliableinformation about the patient’s symptoms, expected151course and treatment plan, changes in condition andprognosis. Information about the physical enviroment,routines and procedures is considered of lesserimportance. As family members often developmisperceptions of extremely threatening informationwhich may require further clarification, it would behelpful for nurses to be present when physiciansprovide information about diagnosis, condition orprognosis. Finally, health care providers must besensitive that some family members are not ready toreceive “bad news” and this may be a protectivestrategy to maintain a hopeful appraisal. The effectsof providing any information should be monitored andevaluated.Fourth, the findings suggest family members relyon nurses and other health care providers for emotionalsupport. Nurses could provide emotional support bymeeting with family members to clarify whichuncertainties exist and to determine if thoseuncertainties should be reduced, alleviated ormaintained. Findings suggest that family membersprimarily perceived uncertainty related tounpredictability and ambiguity of the situation.The nurse may be able to reduce uncertainty through theprovision of knowledge or clarification of inaccurateconclusions or misperceptions. The findings suggestlistening to the concerns of family members may152eliminate some of the stress associated with a dangerappraisal and may help family members to clarify whichuncertainties can be altered and which cannot.Study findings suggest access to the patient isan important factor which provides support and reducesuncertainty, Visiting policies should be revised ifnecessary to ensure that access to the patient by thefamily member is as unrestricted as possible. Thefindings suggest family members are concerned about“bothering” staff and may be uncomfortable with thecurrent communication systems available to gain access.It might be helpful to have a volunteer in the waitingroom who could assist family members to gain accessto the patient.The findings suggest uncertainty may be related tothe difficulties experienced by many family members inestablishing links with emotional, practical andspiritual resources. Written information aboutavailable resources within the hospital and communitycould be developed and made available to familymembers. In addition, individuals such as the socialworker, pastoral care worker and clinical nursespecialist (CNS) could work as a team to provideemotional, spiritual and practical assistance asrequired. It is important that these individuals beaccessible and visible to family members as many familymembers who would welcome assistance do not actively153seek resources in the initial ICU phase. In addition,it would be useful to provide family members withwritten information about unit routines and the staffhierarchy. This information would clarify themisperceptions some family members have about the rolesand responsibilities of health care providers in theICU.Nurses should recognise the importance offacilitating a hopeful perspective to family membersin the ICU experience. Some family members may needto maintain uncertainty in order to maintain hope. Thefindings suggest that the provision of expert care, aempathetic and caring approach to patients and familymembers, providing anticipatory guidance on what toexpect, ensuring access to patients, and facilitatingspiritual support are interventions which may promotea feeling of control and hope for family members. Allfamily members need to feel there is hope for apositive outcome. In addition, some family membersfeel hope when they perceive health care providers willensure the patient is kept comfortable and does notsuffer.The wide range of physical and emotional responsesassociated with a danger appraisal, such as anxiety,worry and helplessness should also be addressed bynursing staff. Nurses should acknowledge theseresponses and help family members to understand that154families of critically ill patients often feel strain.It is important to anticipate that family members ofpatients with chronic illness or who are geographicallyisolated from usual supports are most likely to feelthis strain. In addition, family members of ICUpatients who have symptoms which are very ambiguous,such as altered level of consciousness, may develop adanger appraisal. Anticipatory guidance related to theneed to deal with changing family roles, multipleresponsibilities and inevitable role conflict could beprovided. Family members also would benefit fromreceiving as much information as possible to maketreatment decisions in the best interests of thepatient. Nurses should acknowledge the strainassociated with this role. In addition, development ofa trust relationship may allow family members to feelmore comfortable with occasionally leaving the hospitalto meet other responsibilities or personal needs. Thenurse could assist to schedule a family meeting tofacilitate airing of concerns amongst family membersand to promote the division of responsibilities amongfamily and friends. Finally, nurses should recognisethat the ongoing uncertainty associated with a dangerappraisal may require more intensive assessment andreferral which necessitates the involvement of othermembers of the team, such as the CNS, social worker,chaplain, or psychiatric liason.155Nursing EducationIn addition to teaching nurses the technicalskills required to work with critically ill patients,a nursing curriculum needs to incorporate conceptsrelated to uncertainty and the appraisal process,coping, crisis and chronic illness. Nurses shouldalso begin to understand these concepts in relation tofamily nursing theory. Nursing education shouldfacilitate students’ learning and practice ofthe psychosocial assessment skills and communicationskills which are important to interacting withfamilies of critically ill patients. It is alsocritical that the nurse learn strategies such asnegotiation, conflict resolution and team buildingin order to faciliate interdisciplinary practice whichmay promote consistency of care. The need forprovision of information suggests nurses should developan understanding of the principles of adult learningand communicating in times of stress. Nurses shouldalso be provided with learning opportunities to developthe skills necessary to prepare and present materialsfor family education.Nursing ResearchThis descriptive correlational study provides onlya beginning knowledge related to understanding familymembers’ perceptions of uncertainty in the criticalillness experience. There is an need for a significant156body of research to provide direction for nurses caringfor family members of during this experience. The mostpertinent suggestions which have evolved from the studyare as follows:1. The present study measured family members’perceptions of uncertainty at one point in time,and as such, did not allow for measurement ofchanges in uncertainty over time. A longitudinalstudy design would provide a more comprehensiveassessment of changes in the degree and nature ofuncertainty experienced by family members ofcritically ill patients over time. The study couldbe designed to follow family members of ICU patientthrough the ICU experience, immediately posttransfer to the ward setting, and then followingdischarge into the home setting.2. Reading and comprehension of the English languagewas required in the present study to complete thestudy questionnaire. Thus, a clear picture of theimpact of the cultural dimension on uncertainty wasnot possible. There is a need to replicate thestudy with individuals from a variety of cultures toincrease understanding of the cultural beliefs andexperiences which may be related to uncertainty.3. The study suggests there are clinical variableswhich may influence family members’ degree ofuncertainty. These include: patient diagnosis,157actual illness severity, the family members’relationship to the patient, history of recenthospitalization or chronic illness. Given thedifficulties associated with probability sampling inthe critical care clinical setting, it would beuseful to proceed with a number of research studieswhich investigated the phenomenon of familymembers’ uncertainty in a variety of clinicalsettings. Meta-analysis of the data from multiplestudies would permit more accurate conclusions to bedrawn about the clinical variables which may alterthe degree of uncertainty perceived by familymembers.4. The levels of uncertainty experienced may havevaried in relation to the instrument used to measureuncertainty. The PPUS-FM should be refined torevise items which are difficult to interpret, toremove items which do not apply to the critical careillness experience, and to incorporate items whichreflect the family role uncertainty. Given the factthat the original factor analysis of the instrumentwas conducted with parents, it would be useful toestablish construct validity of the scale for familymembers.5. Although not statistically significant, a negativecorrelation was found between perceived illnessseverity and uncertainty in this study. The158investigator concluded that illness severity ismore likely to be associated with the process ofappraisal than the level of uncertainty. Furtherstudy is warranted to explore the relationshipsbetween uncertainty, perceived illness severityand appraisal.6. The current study specifically focused on theantecedent variables which led to the perception andappraisal of uncertainty. Studies should beconducted with family members of critically illpatients which specifically investigate therelationship between uncertainty and copingstrategies and the situations in which uncertaintyfacilitates a hopeful appraisal.7. The study explored an individual family member’sperceptions of uncertainty. Findings suggest thefamily as a whole is impacted by the criticalillness of members and its view may be differentfrom that of the individual family member. It isimportant for qualitative research to be undertakento describe and explore the phenomenon ofuncertainty in the critical care illness experiencefrom the perspective of the family as a whole.8. There is an urgent need for nurses to develop andevaluate efficient and effective family assessmenttools in the critical care setting. It would alsobe useful to design intervention studies which159specifically develop and test interventions that mayimpact on the degree of uncertainty and adjustmentexperienced by family members. This study’sfindings suggest areas which should be examinedinclude: the provision of orientation programs oreducational materials; the use of support groups orstress management techniques; the impact ofinterdisciplinary collaboration; and theimplementation of different care delivery systems,such as primary nursing or family focused care.Nursing TheoryThe Mishel (1988) theory of Uncertainty in Illnesswas useful to explain specific factors in the ICUexperience which were related to family members’perceptions of uncertainty and appraisal. The ideathat nurses can influence factors which are related touncertainty and coping, such as promotion of atrusting relationship, is worthy of further study.Mishels’ (1988) theory should continue to be used inguide future research endeavours in clinical practice.The theory may require modification for futureuse with family members. The theory lacks thenecessary time dimension to fully account for thechanges in uncertainty, appraisal and coping thatevolved in family members over time. In addition, theUncertainty in Illness theory and the PPUS-FMrequire modification to incorporate the processes160of family member uncertainty related to role changesand role conflict. It would be beneficial if thePPUS-FM was tested and modified to more accuratelymeasure family member uncertainty and uncertaintyspecific to the critical care illness experience.SummaryThis chapter concludes the report of the researchstudy which sought to describe and explore familymembers’ perceptions of uncertainty during the ICUexperience. The study has been summarized, majorconclusions have been highlighted, and implicationsfor nursing practice, theory, education and researchhave been presented. 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If you areundecided about how you feel about your Family member, thenmark under “Undecided” for that statement. Please respondto every statement.1. I don’t know what is wrong with my family member.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)2. I have a lot of questions without answers.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)3. I am unsure if his/her illness is getting better or worse.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)4. It is unclear how bad his/her pain will be.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)1705. The explanations they give about my family member seemhazy to me.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)6. The purpose of each treatment for my family member isclear to me.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)7. I do not know when to expect things to be done to him/her.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)8. His/her symptoms continue to change unpredictably.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)9. I understand everything explained to me.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)10. The doctors say things to me that could have manymeanings.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)11. I can predict how long his/her illness will last.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)17112. My family member’s treatment is too complex to figureout.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)13. It is difficult to know if the treatments or medicationsare helping my family member.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)14. There are so many different types of staff, it’s unclearwho is responsible for what.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)15. Because of the unpredictability of my family member’sillness, I cannot plan for the future.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)16. The course of my family member’s illness keeps changing.He/she has good and bad days.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)17. It’s vague to me how I will manage the care of my familymember after he/she leaves the hospital.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)18. It is not clear to me what is going to happen to myfamily member.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)17219. I usually know if my family member is going to have agood or bad day.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)20. The results of my family member’s test are inconsistent.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)21. The effectiveness of the treatment is undetermined.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)22. It is difficult to determine how long it will be beforeI can care for my family member by myself.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)23. I can generally predict the course of my family member’sillness.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)24. Because of the treatment, what my family member can doand cannot do keeps changing.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)25. I’m certain they will not find anything else wrong withmy family member.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)17326. They have not given my family member a specificdiagnosis.Strongly Agree Agree Undecided Disagree Strongly Disagree(5) (4) (3) (2) (1)27. My family member’s distress is predictable. I know whenit is going to get better or worse.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)28. My family member’s diagnosis is definite and will notchange.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)29. I can depend on the nurses to be there when I need them.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)30. The seriousness of my family member’s illness has beendetermined.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)31. The doctors and nurses use everyday language so I canunderstand what they are saying.Strongly Agree Agree Undecided Disagree Strongly Disagree(1) (2) (3) (4) (5)Reference: Mishel PPUS for Family Members of Adult CriticallyIll Patients Adapted According to Instructions ByMishel._7-174F//Request !ormppusI request permission to copy the Parent/child Uncertainty in illness Scale for use inmy research entitled, (/ fI/?/IV/ Mi/Pf?,A*/ f)i” )4kJ Cr CAj/k4J/ /j. /,i /A; (tIn exchange for this permission, I agree to submit to Dr. l4ishel, upon cozr>letion ofthe study a printout of the uncertainty data or a 5 inch disk containing the data witha data dictionary. The data must contain information on each subject’s age, sex,education and diagnosis, along with the raw data on the uncertainty scale. This datawill be used to establish a normative data base for clinical populations. No otheruse will be made of the data submitted. Credit will be given to me in reports ofnormative statistics that make use of the data I submitted for pooled analyses. I alsoagree to send Dr. Mishel a copy of my findings. I understand that my report will beused to compile information on the theory of uncertainty in illness. Credit will begiven to me in any reports referring to my findings.7t4,/ //, £/(Signature);; /3iC/,4 (Date)Position and Full Address ,Y7da-’ /2-//&-of Investigator.C771// /, ‘tJj-t F cijV7c’/i5// L/JPermission is hereby granted to copy the MUIS for use in the research described above.(N\k- (Ye)Merle H. Mishel(Date)Please send two signed copies of this form to Merle B. Hishel, Ph.D., College ofNursing, University of Arizona, Tucson, Arizona 85721.MHN:pwrevised 1/89175Appendix BVisual Analogue Scale (VSS) - Perception of Illness Severity176Code:______Visual Analogue Scale — Perception of Illness SeverityInstructions: Below is a picture of a scale which will beused to determine how ill you view your family member to be.The left side of the scale represents NOT SERIOUSLY ILL andthe right side of the scale represents VERY SERIOUSLY ILL.Please draw a vertical line through the point on the scalewhich represents your view of your family member’s conditionTODAY:Not VerySerious SeriousScale developed by Pamela Miller, April, 1993.Reference: Lee L., & Kieckhefer (1989). Technical notes:Measuring human responses using visual analoguescales. Western Journal of Nursing Research,11(1), 128—132.177Appendix CDemographic Information Sheet178CodeDemographic Information SheetFrom the Family Member:1. Relationship to the ICU patient:Spouse Parent Sibling Adult child Other2. Sex of the family member: Male____Female____3. Age of the famly member:____4. Number of days the patient has been in ICU:_ _days5. Occupation of the family member:6. Education of the family member:_______1. Up to Grade 8__4. College or University2. Grade 9 - 12 5. Graduate Degree_3. High School Graduate7. Country of birth of family member:_ ______ ____8. If not born in Canada, year of emigrationto Canada:________9. If English is a second language, what is the primarylanguage of the family member:__ ___ ____ ____10. Religious Affiliation of family member (Specify)11. Previous ICU experience: No Yes_If yes, please describe__ __ _12. Family member’s understanding of the reason his/herill relative is in the ICU:Code:From the Medical Record:1. Institution: Hospital A______Hospital B2. Date of admission to the ICU:____3. Patient’s age:_____years4. Patient’s sex: Male____Female5. Medical Diagnoses:__179180Appendix DInterview Guide181Interview GuideI would like to ask you a few questions that will helpme get a better understanding of the uncertainties you maybe experiencing while having a family member in the ICU.Your answers to the questions will be tape—recorded.Take the time to answer the questions and feel free to addadditional comments.1. What is your understanding of your family member’scondition at this point in time?2. Are there things about your family member’s illness thatare unclear or worrisome to you? If so, could youplease describe these to me?3. Are there things or events in the ICU environment whichare unclear or worrisome to you?Probe: Some family members have told me the unfamiliarICU setting or hospital setting can be very confusing.Have you found this?4. What information would help you to have a betterunderstanding of this situation?Probe: Some family members often have many unansweredquestions related to the experience of having an illfamily member in the ICU. What questions would youlike answered?5. What kind of changes are you experiencing as a resultof your family member’s illness? What do you anticipatein the future?182Appendix EProtocol for Initial Contact of Family Members183Protocol For Initial Contact of Family MembersBy The AHN/HNTitle: Uncertainty in Family Members of AdultICU Patients1. Family members who are eligible for the studyinclude:a. Spouse (Married or Common—law), Parent, AdultChild, Sibling or other person who has asignificant relationship with the patient.b. Family members who are 19 years of age or older.c. Family members who can read and speak English.d. Family members of patients who have been in theICU less than 7 days.2. Family members who, in the opinion of theAHN/HN are in severe emotional distress, shouldnot be contacted about participation in thestudy.3. Family members should jj be contacted until initialemergency procedures are completed and the patientis stabilized. Initial contact should be completedas close as possible to within 48 hours of thepatient’s admission to the ICU.4. The HN or ANN should provide the family member witha simple explanation about the purpose of the study.The family member should be given a copy of theinformation letter describing the study.Note: The HN who is designated as an agency contactperson is excluded from initial contact of subiects.5. Ask the family member’s permission to be contactedby the investigator who will provide a more detailedexplanation of the study and obtain consent. Pleaseensure family members have sufficient time toconsider this request. Also, it is very importantthat family members are aware that refusal toparticipate in the study will not jeopardize theirfamily member’s medical or nursing care.6. To avoid duplication of initial contact, the ANNsand HN should keep a list of family members who havebeen contacted and whether they wish to participateor not. The investigator and HN who is designatedas an agency contact person will not have access tothis list.7. The investigator will maintain daily contact withthe AHN to determine which potential subjects may becontacted.184Appendix FInformation Letter for Family Members185Title: Uncertainty in Family Members of ICU PatientsPrinciple Investigator: Pamela Miller, Ph. 277—5819[Agency Contact Person: Name, Phone no.]Dear Family Member:As a Registered Nurse who has worked in intensive careunits (ICUs) for the past fourteen years, I am concernedabout family members with a relative in the ICU. As part ofmy course work for graduate studies, I am conducting aresearch study to find out more about how family memberswith a relative in the ICU view the uncertainties related totheir relative’s illness or treatment.Participation in the study is entirely voluntary. Youmay decide not to participate or may withdraw from the studyat any time without affecting your family member’s currentor future treatment. All information resulting from thisstudy will be kept strictly confidential. The studyquestionnaires will be coded so only the investigator willbe aware of your identity. Your name and any otheridentifying information will not be associated with anypublished or unpublished reports arising from this study.Participation in the study involves approximately 20minutes to complete questionnaires. Although the study willnot directly benefit you, the information provided mayassist nurses to help other family members during thisdifficult time.If you are interested in participating or finding outmore about the study, please let the Assistant Head Nurse ofknow of your interest, and what is the best time to meetwith you. I will then be in touch with you and can answerany questions or concerns you may have prior to proceeding.Thank you for taking the time to consider taking part in myresearch study.Sincerely,Pamela Miller, R.N.Faculty AdvisorsAnna Marie Hughes, Ed.D., CRN,Assistant Professor, Ph. 822-7437Carol Jillings, R.N., PhD,Associate Professor, Ph.822-7479186Appendix GConsent Form187Informed ConsentTitle: Uncertainty in Family Members of Adult ICU PatientsInvesticator: Pamela Miller,R.N., M.S.N. Student[Agency Contact Person: Name and Phone No.)You have been asked to participate in a research study.Participation in this study is entirely voluntary. You maydecide not to participate or may withdraw from the study atany time without affecting your family member’s current orfuture treatment.PurposeFamily members of patients who are in the intensive careunit (ICU) often experience increased stress during thisdifficult time. One factor which may increase familymembers’ stress may be uncertainty about the patient’sillness or treatment situation. The purpose of this studywill be to find out more about how you as a family memberview the uncertainty which may occur during the first weekof your relative’s admission to the ICU. The study willalso determine how seriously ill you view your familymember’s condition to be.ProceduresParticipation in the study involves completion of 2questionnaires. The questionnaires take approximately 20minutes to complete. You have the right to refuse to answerany question in the questionnaires. You may also withdrawfrom the study at any time.Risks and BenefitsAlthough there is no direct benefit to you in this study,the information you provide may assist nurses and otherhealth care providers to gain a better understanding of someof the concerns experienced by family members of ICUpatients. This information may be useful to assist otherfamily members during this difficult time. The investigatorwill be available to assist you with the completion of thequestionnaires. It is possible completion of thequestionnaires may make you feel uncomfortable. You will begiven the opportunity at the end of the questionnaires todiscuss any concerns, questions or feelings which may haveoccurred as a result of the study procedures.188Page 2 of 2Monetary ConmensationThere will be no monetary compensation for participating inthe study.ConfidentialityAll information resulting from this study will be keptstrictly confidential. The questionnaires will be coded sothat only the investigator will be aware of your identity.Your name and any other identifying information will not beassociated with any published or unpublished reports arisingfrom this study.If you have any questions or concerns about the study, youmay contact the investigator, Pamela Miller at 277-5819 orher two faculty advisors listed below. In addition, youmay also contact [Name and phone no. of agency contactperson)Faculty AdvisorsAnna Marie Hughes, Ed.D., CRN,Assistant Professor, Ph. 822—7437Carol Jillings, R.N., PhD,Associate Professor, Ph. 822—7479I have read the above information and I have had theopportunity to ask questions to help me understand whatmy participation would involve. I freely consent toparticipate in the study and acknowledge receipt of a copyof the consent form. I agree to completion of the studyquestionnaires.Signature of the Participant DateSignature of the Witness189Appendix HInformation Letter for the Head Nurseand the Assistant Head Nurse190Re: Research Study- Uncertainty in Family Members ofAdult ICU PatientsDear [ insert HN or AUN name]:I am requesting your assistance to conduct a nursingresearch study in the ICU. The purpose of the study is toinvestigate the uncertainty experienced by family members ofICU patients. Family members with a critically ill relativein the ICU experience many uncertain events. A betterunderstanding of family members’ perceptions of uncertaintymay facilitate the development of interventions whichprovide direction for more specific support of familymembers during the ICU experience.I have proposed that the initial contact of familymembers be undertaken by the HN and/or the AHN. The HN whois designated as an agency contact person would be excludedfrom initial contact of subjects. I would specifically liketo discuss this protocol with you to ensure what is proposedmeets with your approval.I will be in contact with you to arrange a meetingas soon as possible to answer any questions or concernsyou may have. I am also willing to inform any of your staffabout the study.Your assistance in helping to facilitate this researchstudy is greatly appreciated.Sincerely yours,Pamela Miller, R.N.,B.Sc.N, MSN StudentPh. 277—5819lAgency Contact PersonName, Phone No.]Faculty AdvisorsAnna Marie Hughes, Ed.D., CRN,Assistant Professor, Ph. 822-7437Carol Jillings, R.N., PhD,Associate Professor, Ph. 822-7479Appendix IInformation Letter for the ICU Medical Director191192Re: Research Study — Uncertainty in Family Members ofAdult ICU Patients[Medical DirectorIntensive Care UnitAgency Name JDear Dr. [insert name)I am writing to inform you about a nursing researchstudy which I will be conducting in the ICU. The purpose ofthe study is to investigate the uncertainty experienced byfamily members of ICU patients. Family members with acritically ill relative in the ICU experience many uncertainevents. A better understanding of family member’sperceptions of uncertainty may facilitate the development ofinterventions which provide direction for more specificsupport of family members during the ICU experience.I have met with the Head Nurse and Assistant HeadNurses of ICU to describe the study in greater detail and todiscuss the protocol for participant selection and informedconsent. They have agreed to undertake initial contact offamily members as outlined in the attached protocol.I would be most willing to meet with you should youfeel that there are medical implications which need to beaddressed or if you have questions which arisefollowing review of the attached information.Sincerely yoursPamela Miller, R.N.B.Sc.N., MSN Student[Agency Contact Person:Name, Phone no.)Faculty AdvisorsAnna Marie Hughes, Ed.D., CRN,Assistant Professor, Ph. 822-7437Carol Jillings, R.14., PhD,Associate Professor, Ph. 822—7479193Appendix JUncertainties Perceived by Family Members of ICU Patients194Uncertainties Perceived by Family Membersof ICU PatientsIllness Situation1. Unsure if the patient will recover from surgery2. Unsure if complications can be controlled3. Unable to predict if patient’s condition willchange — a “time bomb”4. Don’t know what caused the patient’s condition5. Can’t predict future complications6. Can’t predict if the patient will get backto normal7. Unsure of future prognosis8. Unsure if the patient will survive9. Unsure if the patient has developed brain damage10. Unsure if the patient is in pain11. Unsure if the patient is in physical distress12. Unsure if the patient is in emotional distress13. Unsure if the patient will survive without theventilator14. Unable to interpret changes in the patient’sconditionTreatment Situation1. Not confident doctors know the cause ofthe problems or how to treat them2. Doubts chronic medical problems can becorrected by surgery3. Unsure the treatment will be effective4. Uncertain about the speed of diagnostic tests5. Can’t predict if side effects will occur6. Unsure if the patient will survive treatment7. Doubts decision to encourage parent to havesurgery8. Not sure about making decision to commencechemotherapy treatment for patient9. Doubts decision to continue aggressive treatment10. Vague about results of tests11. Can’t predict discharge time12. Unsure if the patient will be discharged home orto another hospital13. Unsure of treatment plan to manage care at home195Environment/Health Care System1. Not clear re discharge arrangement2. Not clear about location of future treatmentif the patient survives3. Unable to rely on available bed for patient4. Unsure where the money will come from tostay in Vancouver5. Unsure where to find inexpensive parking oraccommodation6. Not clear on where to find affordable long—termstay accommodation7. Unsure how to access social worker8. Unsure if should approach social worker withpersonal concerns9. Not clear why ICU so noisy10. Not clear on the purpose of ICU rounds11. Unsure about changes in monitor readings, alarms12. Doubts use of technology to prolong life13. Can’t predict when patient changes will occur14. Insecure about the initial appearance of ICU patient15. Unsure who answers the intercom system16. Unsure if questions from family member “bother” staff17. Can’t decide whether to use intercom system toaccess patient or just to go in18. Not clear “what is going on” while in the waiting roomHealth Care Provider1. Unsure if health care providers are always aware ofchanges in the patient’s condition2. Unsure if can rely on nurse who doesn’t explain changein treatment3. Unsure if can rely on doctor to communicate newcomplications to family doctor4. Wonders if complications could have been prevented ifdetected earlier5. Unsure why it took so long to transfer the patient fromthe ward to the ICU6. Doubts can rely on ward staff to know if the patientdevelops a complication or relapse7. Unsure why information staff not aware of locationof patient8. Doubts reliability of conflicting reports fromdifferent physicians9. Doubts condition reports which do not match thepatient’s appearance10. Wonders why physician and nurse gave conflictingreports19611. Not confident when the nurse performed an action whichthe physician had indicated should not be done12. Can’t rely on getting access to physician forinformation on the patient’s prognosis13. Not clear who to talk to or whose information torely on when dealing with numerous specialists14. Not sure who to talk to about potential concernsabout managing care of patient at home15. Not confident an unfamiliar nurse can detect changesin the patient’s condition16. Doubts if the patient’s medical condition has beentreated appropriately in the past17. Doubts staff can take care of patient when theyappear “tired”Family Member Functioning1. Doubts ability of patient to cope with the impactof multiple injuries/future disabilities2. Wonders if information about seriousness of the illnessfrightened spouse3. Doubts ability to support patient emotionally ifentire family is not able to provide support4. Doubts ability to control emotions at the bedside5. Unsure how to manage husband who insists he willgo home instead of to another hospital6. Doubts ability to care for patient at home7. Cannot decide whether to stay with the patientor with children8. Cannot decide whether to attend to personal concernsor stay with the patient9. Doubts ability to maintain own physical health10. Doubts ability to cope with work, taking care offamily, and taking care of self11. Doesn’t know if can emotionally cope with death ofpatient12. Can’t decide if parents should move in withfamily member ladult child) in the future13. Adult child unsure if parent can cope withfurther “bad news” about his ill spouse14. Cannot decide if should make a major move tonew house at present (Reluctant to leave hospital)15. Unsure about future plans or changes for self orother family members16. Wonders why initial accident happened to patient17. Doubts ability to communicate patient condition toother family members18. Cannot predict how children will respond to seeingfather in ICU19. Doubts if other family members are honest about thepatient’ s condition

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