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Bone marrow transplantion : the experience of family members Kerzner, Jaye C. 1992

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BONE MARROW TRANSPLANTATION:THE EXPERIENCE OF FAMILY MEMBERSbyJAYE C. KERZNERB.Sc.N., University of Alberta, 1980.A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIESSchool of NursingWe accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIAApril, 1992© Jaye C. Kerzner, 1992In 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)School of NursingThe University of British ColumbiaVancouver, CanadaDate  April 21, 1992DE-6 (2/88)i iAbstract The purpose this qualitative study was to explore theexperience of BMT from the perspective of individual familymembers and to describe common aspects of that experience,according to the phenomenological method.Data were collected through a series of open-endedinterviews with eight family members of transplant recipientsduring the hospitalization phase of BMT. Initial interviewswere loosely guided by research questions formulated from areview of the literature; subsequent interviews were based onemergent themes from the first interviews. The data, comprisedof verbatim transcriptions of the audiotaped interviews andfield notes of the researcher, were analyzed using the stepsoutlined by Giorgi (1985) and resulted in the identification ofrecurrent themes.Findings revealed that family members attributed multiplemeanings to bone marrow transplantation. They viewed it as a:life-saving and a life-threatening event, radical treatment,pioneering venture, treatment with an unpredictable recoveryperiod, and as an interruption in their lives. Family memberswere challenged by the uncertainty and disruption that BMTcreated in their lives. Their efforts to cope with thetransplant centred around managing their emotions arising fromthe uncertainty and adjusting to the many disruptions in theirlives. Since family members felt there was little they coulddo to influence the transplant outcome, they accepteduncertainty as an intrinsic part of the experience and focusedon establishing and maintaining a balance between their feariiiand realistic hope. Family members adjusted to the disruptionsin their daily life, relationships and life outlook by givingup certain daily responsibilities and taking on a support rolein relation to the ill person, developing interpersonalconnections with those dedicated to a positive transplantoutcome and separating from those who undermined their coping,and by restricting their view of the future, redefining timeand shifting priorities. The data revealed that generally,family members coped with the challenges of BMT using their ownresources and abilities; however certain interpersonal andsituational factors were identified which may signal a need foradded support.The findings provide nurses with a better understanding offamily members' responses to BMT and provide general directionfor assessment of family members, predicting the difficultiesfamily members may encounter, and helpful nursinginterventions. Implications for future nursing researchinclude further exploration of family members' experiencesbeyond the hospitalization phase, expansion of selected themesarising from the study, and inclusion of different sub-groupsof family members whose experiences may differ from that ofthis study's participants.ivTable of ContentsAbstract ^  iiTable of Contents ^  ivAcknowledgments  viiCHAPTER 1: INTRODUCTIONBackground to the Problem ^  1Statement of the Problem and Purpose ^  3Conceptual Model Guiding the Study  4Research Question ^  5Definition of Terms  ^5Introduction to the Method Used in this Study  ^6Significance of the Study  ^6Theoretical Significance  ^6Practical Significance  ^7Assumptions and Limitations  ^7Summary ^  8CHAPTER 2: CRITICAL REVIEW OF THE LITERATUREThe Needs of Family Members During Illness  ^9Conclusions about Needs-Based Studies ^ 12Family Members Living with Cancer ^  14The Impact of Cancer on Family Members ^ 15Family Members Coping with Cancer Illness  18Conclusions about Family Members Living with Cancer ^ 20Social Support during Illness ^  21Unique Support Demands Arising from Cancer Illness ^ 22Family Members as Providers and Recipients of Support 23Problems Associated with Social Support ^ 26The Dynamic Nature of Support ^  27VConclusions about the Support Literature ^ 28Summary of the Literature Review ^  29CHAPTER 3: METHODThe Phenomenological Perspective ^  32Issues of Validity and Reliability  34Ethical Considerations ^  35Selection of Participants  36Purposive Sampling ^  36Selection Criteria  37Selection Process ^  38Characteristics of the Participants ^  40Data Collection ^  42Data Analysis  43Summary ^  45CHAPTER 4: THE FAMILY MEMBERS' ACCOUNTSMultiple Meanings of Bone Marrow Transplantation . . . . 46Life-Saving and Life-Threatening Procedure ^ 47Radical Treatment ^  48Pioneering Venture  50Unpredictable Recovery ^  51Sudden, Unexpected Interruption ^  52The Challenge of Uncertainty ^  55Accepting Uncertainty  55Fear Associated with Uncertainty ^  57Balancing Hope and Fear ^  60Motivation for Achieving Balance ^  60Strategies for Balancing Hope and Fear ^ 62The Challenge of Disruption ^  69viAdjusting Relationships ^  75Separation within Relationships ^  75Connection within Relationships  78Fostering Connection: Assuming a Support Role •^81Adjusting Outlook ^  85Summary ^  90CHAPTER 5: DISCUSSION OF THE FINDINGSMultiple Meanings of Bone Marrow Transplantation . .^92The Challenges: Uncertainty and Disruption ^ 95Uncertainty ^  96Accepting Uncertainty ^  98Emotional Responses  101Balancing Hope and Fear ^  108Hope ^  112Disruption  114Adjusting Daily Life ^  115Adjusting Relationships: Separating and Connecting ^ 117Adopting a Support Role ^  119Adjusting Life Outlook  122Summary ^  125CHAPTER 6: SUMMARY, CONCLUSIONS, AND IMPLICATIONSSummary of the Research Project ^  128Conclusions ^  129Implications for Nursing Practice ^  130Implications for Nursing Research  135Bibliography ^  139Appendices  148viiAcknowledgmentsTo the family members who shared their stories, I extendmy appreciation. The openness, honesty, and courage that theydisplayed during a difficult time in their lives deeply movedme and forever changed my own views about cancer, life, andfacing hardship.Without the support and gentle encouragement of myhusband, Zane, and the constant affirmation provided by thepresence of Marvin during those lonely days of reflection andrevision, this project would not have come to fruition -- thankyou.Thanks also to Herta, who always seemed to know the rightthing to say when receiving my phone calls, to Frank who madeit easier for me to take on this academic challenge, and toKathy and Manuel who provided me with a new perspective at acritical time during the writing of this manuscript.Finally, my thanks to the B.C. Medical Services Foundationfor funding this research project.1CHAPTER 1: INTRODUCTIONBackground to the ProblemBone marrow transplantation (BMT) was introduced in theseventies as an experimental treatment for hematologicaldiseases. In the ensuing years it has become standardtreatment for leukemia, lymphoma and aplastic anemia and isbeing tested for use with other illnesses. In British Columbiaalone, the number of transplants performed has risen from lessthan ten in 1980 to over one hundred in 1989 (Phillips, 1990).As centres across Canada develop and expand BMT programs, thenumber of patients and family members affected by BMT willcontinue to increase.Cancer illness is particularly difficult to deal withbecause of the emotional reactions it evokes in individualswithin our society. One distinctive characteristic of canceris its social stigma (Tiblier, 1989). Healthy individuals mayfeel repulsed by a person with cancer (Wortman & Conway, 1985)and the thought of cancer frightens not only those afflicted,but family and friends as well (Wortman, 1984). In addition,families living with cancer face the uncertainty associatedwith recurrence of the disease (Lewis, 1986; Northouse, 1984).Often family members are assumed to be a source of emotionalsupport for patients undergoing BMT (Haberman, 1988; Hutchison& Itoh, 1982; Nuscher et al., 1984; Popkin & Moldow, 1977).However, it is not clear whether family members perceivethemselves as supporters of the ill person or whether they areable or willing to provide support at a time when they aredealing with their own emotional reactions.2Bone marrow transplantation presents a myriad ofchallenges to the family facing the treatment. The seriousnessof the underlying illness and the possibility of long termcomplications, or even death, create an emotionally chargedtreatment event. The use of high technology equipment andinterventions may elicit feelings of separateness and isolationamong the ill individual and family members (Clifford, 1986).A hospitalization period of six to ten weeks, most of which isspent on an isolation unit, may exacerbate feelings ofloneliness imposed by the separation of family members. Sincefew centres in Canada offer a BMT program, family members areoften removed from their support networks. Thus, thecircumstances surrounding BMT may add to the stress of theillness and treatment.Haberman (1988) described the significant events andemotional responses of patients undergoing BMT according to sixstages. The first stage is marked by the decision to proceedwith BMT. In the second stage, pre-admission, the patientmakes arrangements to enter hospital, separates from thefamily, and mentally prepares for the transplant. The thirdstage is characterized by the recipient's efforts to cope withchemotherapy and radiotherapy. During the fourth stage, whileimmunosuppressed, the patient focuses on the physical symptomsbrought on by the treatment and the psychological effects ofisolation. Uncertainty and control become prominent in thefifth stage as the patient awaits signs of engraftment andregains independence. In the last stage feelings of separationanxiety may arise as the patient prepares for discharge and3begins the process of normalization. Alongside these eventsand the shifting concerns of the ill person, are theexperiences of family members.Traditionally, the patient has been viewed as the focus ofnursing intervention. When the patient is the sole focus ofconcern, actions are directed toward the care of the ill personand efforts to help family members are justified in terms ofthe eventual benefit to the patient. Family-focused care is analternate approach based on the belief that family members arelegitimate targets for nursing intervention, regardless oftheir role in supporting the patient (Green, 1980; Lewis, 1983;Welch, 1981). This view recognizes that family members mustcope with the demands placed on them when someone in theirfamily becomes ill. The latter view guided this study.In summary, interest in the experiences of family membersof patients undergoing BMT arose from three considerations.First, the combination of a serious illness like cancer and anintensive treatment regimen like BMT creates a significantsource of tension for family members. Second, physical illnessgenerates in the ill member a need for support that is oftenassumed to be forthcoming from family members. Third, familymembers coping with illness are of concern to nurses.Statement of the Problem and PurposeThe impact of illness on family members has receivedlimited attention in nursing literature (Lewis, 1986;Northouse, 1984). Indeed, no published studies were foundwhich investigated the perspective of family members during4BMT. Therefore, the problem addressed in this study was thelack of existing knowledge of family members during BMT.Since no description of how family members view the eventssurrounding BMT nor how they construct meaning in relation tothose events was found, the purpose of this study was toexplore the experience of BMT from the perspective ofindividual family members and to describe that experience asarticulated by the family members themselves.Conceptual Model Guiding the StudyThe U.B.C. Model for Nursing (Campbell, 1987) guided theformulation of the problem and the method in this study.According to this model, the role of the nurse is to nurtureindividuals who are experiencing critical periods in theirlives. Critical periods include maturational events orunpredictable events that require the person to develop newcoping behaviours. Illness is considered an unpredictableevent which requires individuals to develop and use new copingbehaviours to respond to the tensions that may be felt as aresult of the illness.In this study, the unpredictable event is BMT and theindividuals of concern to the nurse are those family membersaffected by this event. Bone marrow transplantation isrecognized as a force which enters the psychologicalenvironment of the family member. Psychological environment isan abstract term which refers to the events and objects aroundwhich the family member constructs meaning. The researchquestion focused on discerning the meaning of BMT for family5members. Accordingly, research methods which elicit thatmeaning were selected.Research OuestionIn this study the intent of the researcher was to acquirean understanding of the experience of family members dealingwith BMT. The research question that guided the study was asfollows:What is the experience of family members of patientsundergoing BMT?This research question was addressed by posing the followingquestions related to the research question:1) How do family members describe their own experiencerelated to the transplantation?2) What do family members experience as the mostmeaningful or challenging aspects of thetransplantation?3) What changes do family members attribute to thetransplantation experience?Definition of Terms For this study the terms contained in the researchquestion were defined as follows:Family member - Any individual that the person with canceridentifies as being significant to her or him, regardlessof kinship ties, common household or marital status.Bone marrow transplantation - The time period during whichBMT occurs, beginning with the first day of theconditioning regime (chemotherapy and/or radiationtherapy) and ending when the patient is discharged fromthe isolation unit.Experience - The personal meaning that an individualconstructs around aspects of BMT that are significant tothat individual.6Introduction to the Method Used in this StudyThis study used phenomenological theory to address theresearch question and to shape the research process.Phenomenology provides nursing with a powerful perspective forunderstanding human response to illness (Lewis & Haberman,1990). The research method arising from phenomenology directsthe researcher to explore the meaning that family membersconstruct in relation to the experience of BMT. This approachresults in a rich description of the phenomenon of interest tothe researcher, but preserves the perspective of theparticipants within that description.Significance of the StudyTheoretical SignificanceThe limited information available on family members duringillness tends to be derived from research questions originatingfrom the perspective of nurse-researchers. Similarly, mostresearch studies investigating the impact of cancer illness onfamily members have used deductive research approàches. Suchapproaches tend to reduce the impact of cancer illness tospecific theoretical constructs and to separate illness fromthe context in which it occurs. In this study, an inductiveresearch approach was used to preserve the personal meaningthat family members constructed in relation to BMT and thecontext in which that experience occured. This studycontributes to nursing's knowledge of how cancer illnessaffects individuals by providing a description of theexperience of BMT from the perspective of family members.7Practical Significance This study provides nurses with insight about aspects ofBMT relevant to family members. Understanding family members'experiences during BMT can then be used as a foundation for: 1)predicting the problems that family members may encounterduring the transplant period, 2) planning appropriate nursinginterventions to address those problems and prevent futureproblems, and 3) permitting nurses to plan care based on theexperience of family members during BMT rather than relying onthe biases and assumptions of caregivers.Assumptions and Limitations This study embraced three basic assumptions: first, thatphenomenological research methods could elicit an understandingof the experience of family members during BMT and second, thatfamily members would be able to describe their perceptionsbased on their own experience.Certain limitations of the study were recognized at theoutset. The quality of the data collected in this study waslimited by the time and resources available to the researcher.The volume of data generated in each interview limited thenumber of family members that the researcher was able tointerview. Finally, since the study participants werecontacted through a single BMT unit and included only thosefamily members who frequented the unit during the patient'shospitalization, the participants were a select sub-group ofthe population of family members affected by BMT. Theiraccounts, therefore, likely did not represent the experiencesof all family members affected by BMT.8Summary In this chapter, the problem and purpose of the study wasstated and the method used to address the research question wasbriefly outlined. Chapter 2 reviews the literature related tothe topic area and identifies what is known about familymembers dealing with cancer illness. The method used in thestudy is detailed in Chapter 3. Chapter 4 describes theaccounts provided by the family members in the interviews. InChapter 5, those accounts are discussed in relation to existingliterature which relates to the findings. In Chapter 6 thestudy is summarized, conclusions are stated and implicationsfor nursing practice and research are examined.9CHAPTER 2: CRITICAL REVIEW OF THE LITERATUREThis chapter presents the initial review of the literaturewhich links what is known about family members during illnessto the stated purpose of the study. This literature reviewguided the research method by providing a basis for theresearch questions. In chapter five the findings of the studywill be further examined in relation to the literature.The published nursing literature related to BMT focusesmainly on the patient undergoing treatment. No articles werefound which specifically addressed how family members deal withtransplantation. Therefore, literature which focused on familymembers coping with cancer illness, chronic illness andcritical illness were reviewed initially. Since well familymembers have traditionally been viewed as sources of support toill members, social support literature was also examined. Theoverwhelming amount of literature on support was confined totheoretical perspectives and research articles devoted tosupportive relationships and the process of support. Hence,the review which follows proceeds from an examination of theneeds of family members during illness, expands to includeliterature on family members living with cancer, and ends witha review of social support during illness.The Needs of Family Members During Illness Several studies focused on identifying the needs of familymembers of ill individuals, from which five prominent needsarose. The need for information related to the status andtreatment of the ill person was expressed by family membersduring terminal illness (Hampe, 1975), critical illness (Leske,1 01986; Molter, 1979), and cancer illness (Lewandowski & Jones,1988; Tringali, 1986; Welch, 1981; Wingate & Lackey, 1989;Wright & Dyck, 1984). The need for information persistedthrough all stages of cancer illness: diagnosis, initialtreatment, follow-up, recurrence, and the terminal stage(Tringali; Wright & Dyck). Second, family members needed tobe assured that the ill person was comfortable and receivinggood care (Dyck & Wright, 1985; Leske; Mayer, 1987; Molter;Welch; Wright & Dyck). The third common need of family memberswas that care provided by health professionals be patient-centred (Dyck & Wright; Hampe; Lewandowski & Jones; Molter;Skorupka & Bohnet, 1982; Wright & Dyck). Physical proximity tothe patient, especially during hospitalization, was alsoimportant to family members (Hampe; Molter; Wright & Dyck).Finally, the need for hope was identified by family membersduring critical illness (Molter; Leske), initial cancertreatment, and the follow-up phase of cancer treatment (Gould &Toghill, 1981; Tringali).In a review of studies on family needs and supportivenursing behaviours, Hull (1989) concurred with the findingsnoted above, and concluded that the need for information,assurance of patient comfort, and physical proximity to thepatient (especially during terminal illness) were important tofamily members. The least supportive nursing interventionswere those designed to encourage ventilation of feelings,although the need for emotional support was expressed byfamilies.11The low priority assigned by family members to theirpsychological and emotional needs in these need-based studiesis surprising in view of the literature which links variousemotional reactions to a diagnosis of cancer. Lewandowski andJones (1988) found that nursing actions directed toward meetingemotional needs were consistently ranked low by family membersexcept during terminal illness, when interventions designed toencourage ventilation of feelings were rated high. Primarycaregivers in a hospice setting identified the least helpfulbehaviours of nurses as those directed toward the psychosocialneeds of family members (Skorupka & Bohnet, 1982). Incontrast, family members caring for cancer patients in the homeidentified their own psychosocial needs as a priority (Hinds,1985; Wingate & Lackey, 1989). These research reports documentthe presence of family members' emotional needs; however, theydo not clarify how family members view the role of the nurse inmeeting these needs. It appears that forces surrounding theillness event may significantly influence family members'perceptions of their emotional and support needs.Related to the need-based studies are research projectsconcerned with helpful nursing behaviours from the perspectiveof family members. Norris and Grove (1986) reported thatsignificant differences existed between nurse-assessed familyneeds and actual family needs. Lynn-McHale and Bellinger(1988) found that nurses were markedly inaccurate in assessingcertain needs. For example, nurses rated the needs, "encourageme to cry", "talk to me about the possibility of notrecovering", and "have another [person] visit with me" as high12priority while family members ranked them very low. Thesefindings suggest that nurses and family members do not alwaysvalue the same nursing interventions, particularly thosedirected toward meeting psychological needs of family members.Only one need-based study was found which used anexperimental design to compare the effectiveness of standardnursing care plans and individualized nursing care plans forfamily members (Dracup & Breu, 1978). Not surprisingly,targeted nursing interventions based on needs assessment werefound to be more effective than standard interventions.Conclusions about Needs-Based Studies The needs-based approach to the study of families dealingwith illness adds to nursing's knowledge by describing onefacet of the illness experience. They identify priority needsand preferred nursing interventions generally. Inductiveresearch methods will be particularly valuable for broadeningand balancing the deductive need-based approach. Broadeningthis understanding of family members during illness may alsoprovide a basis for further instrument refinement which couldstrengthen need assessment tools.Certain limitations to developing an understanding offamily members during illness emanate from the assumptionsunderlying the need-based studies. Those implicit assumptionsare as follows: 1) family members have needs arising from theillness experience, 2) the concept of needs is important andadequate for understanding family members facing illness, and3) understanding the needs of family members will facilitateeffective nursing interventions. None of the need-based13studies linked the concept of needs to a larger theoreticalframework. The absence of theory or empirical research tosupport the use of the concept of needs minimizes thecontribution of need-based studies to theory development innursing.The term "need" is reductionist; it focuses inquiry towardthose aspects of the illness experience which can be classifiedas needs and does not illuminate factors which influence thoseneeds and preferences. The findings of the need-based studiessuggest that the stage of illness and the setting in which theillness occurs may influence the priority of certain needs.Nursing interventions based on the singular focus of needs maynot be sensitive to other aspects of the illness experience.The methods derived for , studying - the needs of familymembers have focused on eliciting and classifying needs,prioritizing needs, or identifying nursing interventions tosupport those needs. Of the thirteen need-based studies citedabove, four used data collection tools which asked respondentsto rank needs (Leske, 1986; Molter, 1979; Tringali, 1986;Welch, 1981), three used semi-structured interview schedules(Dracup ge•Breu, 1978; Hampe, 1975; Hinds, 1985), and twoemployed both methods (Dyck & Wright, 1985; Wright & Dyck,1984). Lewandowski and Jones (1988) presented vignettesdepicting living with cancer, asked participants to assume therole of family members, and elicited their estimation of needsarising from the situations presented. A Q-sort method wasapplied by Skorupka & Bohnet (1982) to determine responses toneed-based nursing interventions. Wingate and Lackey (1989)14used an open-ended questionnaire which focused on needs and oneanecdotal article was based on comments collected duringinformal interviews (Gould & Toghill, 1981).Ranking instruments may identify the priorities of familymembers, but this does not necessarily mean that lower rankedneeds are viewed as unimportant. In addition, the forcedchoice format of these methods limits free expression of familymembers' needs or the factors related to those needs. Semi-structured interview methods may encourage some expression offamily members' perspectives; however, they do narrow the scopeof the investigation and direct the response of theparticipants. None of the tools used in these studies weresubjected to adequate reliability and validity testing so thatresults of these studies must be viewed with caution. Theinstruments used to identify and prioritize needs have mostoften been developed by nurse-researchers based upon literaturereview and adaptations of previously used tools. Clearly, themethods used in the need-based studies limit the usefulness ofthe findings. Descriptive studies are needed to clarify thesignificant concepts arising during family members' illnessexperiences and to provide a basis for further research.Family Members Living with Cancer A broader understanding of how illness affects familymembers was found in research reports which described theimpact of cancer on family members and in studies whichexamined how families cope with cancer illness. Theseapproaches extend nursing's knowledge of how families live withcancer illness beyond that supplied by the need-based studies.15The Impact of Cancer on Family Members In a review of the literature on the impact of cancer onthe family published between 1956 and 1982, Northouse (1984)categorized the problems encountered by family membersaccording to three phases of cancer illness. In a more recentreview, Lewis (1986) examined reports of empirical researchpublished between 1977 and 1985 and identified eleven issueswhich affect family members during cancer illness. Lovejoy(1986) reported the responses of 105 family members reacting tothe hospitalization of an ill member of the family. Theproblems, issues, and responses identified by these authorsoverlap in six areas: emotional tension, role or lifestyleadjustment, uncertainty, support or care of the ill member,concern surrounding the patient's death, and the needs of wellfamily members. Findings related to each of these areas arediscussed in relation to this study's research question.Many authors have substantiated that cancer creates avariety of emotional reactions in family members (Wortman,1984; Wortman & Conway, 1985). Northouse (1984) identified theproblem of "managing emotional tensions" in the initial phaseof cancer illness; however, Lewis (1986) noted that emotionalstrain occurs throughout cancer illness. In a model describingthe functioning of families facing cancer, Giaquinta (1977)described shock as the first phase in the model. Lovejoy(1986) reported that family members felt shock upon hearing thecancer diagnosis, in response to the ill person's loss ofnormalcy, and when witnessing changes in the patient. Whilethere is agreement that cancer illness creates emotional16tension for family members, the ability to predict theemotional reactions at certain stages of the illness has notbeen established (Tiblier, 1989). An understanding of theemotional responses to a particular illness event, such as BMT,would provide clearer direction for nursing intervention.Both Northouse (1984) and Lewis (1986) identified roleadjustment as a concern of family members. The results of theneed7based studies, even those which used open interviewtechniques, did not report this finding. It is possible thatfamily members may not view changes in roles as a problemresulting in a need or that concerns about role adjustment didnot arise during the time period in which the studies wereconducted. The idea that family members develop purposefulroles in relation to the ill member was described by Lovejoy(1986). She noted that, in relation to the patient, somefamily members developed roles for themselves: healer, helper,buffer, watchdog, or advocate. Robinson and Thorne (1984)described the phenomenon of family "interference." Theyproposed that the interfering behaviour of family members waspart of a process by which relationships with health careprofessionals developed. Family members appear to respond tocancer illness by adjusting their roles in relation to thepatient, family, and professionals.The concept of uncertainty is viewed by many authors assignificant in understanding how families cope with cancerillness; however, the meaning of uncertainty is ofteninterpreted differently (Krum, 1982; Lewis, 1986; Mishel &Braden, 1987; Northouse, 1984; Tiblier, 1989). The need-based17studies suggested that uncertainty stimulated a need forinformation (Lewandowski & Jones, 1988) and that the control ofinformation by health care workers resulted in uncertainty forfamily members (Wright & Dyck, 1984). Lovejoy (1986) linkedfeelings of helplessness, guilt, fear and anxiety to theuncertainty experienced by family members. The specific roleof uncertainty in the illness experience of family members isnot clear.Providing support and physical care to the ill personplaces a strain on the family. Northouse (1984) focused on theproblem of providing care to the dying patient at home. Lewis(1986) identified two issues: the physical demand placed onfamily caregivers when the ill person is cared for in the home,and the uncertainty that family members experience whenattempting to comfort the patient in the diagnostic and latestages of cancer illness. From clinical experience, thisresearcher observed that some family members provide a greatdeal of support and physical care to the ill member of thefamily during hospitalization for BMT. No report was foundwhich described how family members caring for the ill memberduring treatment perceive the effects of caregiving on theirown well-being.The possibility that the person with cancer may die is asource of great concern for family members. Northouse (1984)identified "communication about death" and "feelings ofseparation and loss" as central problems for family membersduring the terminal stage of illness. Lewis (1986) describedthe feelings of fear and the existential questions of family18members that arises from the realization that the patient mightdie. The life-threatening nature of the illness underlying BMTand the risks involved in the treatment are likely to elicitsimilar concerns among family members of bone marrowrecipients.The problem of meeting the needs of well family memberscited by Northouse (1984) appears to contradict the finding inthe need-based studies that family members focus on the care ofthe ill member and downplay their own needs. Many of the need-based studies were conducted during acute or crisis events ofillness rather than a chronic stage. Lovejoy (1986) generatedthe theme of "awareness" in her study of family members duringhospitalization. Awareness meant that family members began torecognize factors outside of the ill individual, anticipate andprepare for the future, experience sadness and remorse, expectless of themselves, and focus on self and others. The longperiod of hospitalization during BMT may reflect a similarshift in the focus of concern among family members.Family Members Coping with Cancer Illness The needs, issues and problems of cancer fatiliesdiscussed above develop awareness of what family members arechallenged to deal with during cancer illness. From the fewstudies which have described family members coping with cancer,three ideas about how families cope emerge.First is the notion that coping is described in terms ofwhat is normal as opposed to what has changed. Thorne (1985)studied cancer families using an approach designed to elicitfamily perceptions of their everyday life. The theme of19"normalcy and dignity" was expressed. Families tended to focuson the normalcy of their lives, to deny disruption, and todescribe themselves as coping well. A sense of dignity wasattained through the belief that they did not need outsidehelp. This tendency of family members, to focus on thepositive aspects of coping, differs from the focus of nursingstudies which have described the problems, concerns, or needsof family members during illness.A second theme is that a wide variety of coping strategiesare used by family members. Thorne (1985) described families'use of "strategic choices" to cope with cancer. Thesestrategies supported the normalcy of the family and reflected ashared view among family members about the cancer experience.Woods, Lewis and Ellison (1989) also noted the variation in thestrategies used by individual family members to cope withcancer. They concluded that the various coping strategiesamong family members often achieve similar outcomes.It appears that some coping strategies used by familymembers may signal potential problems. Lovejoy (1986)described a process which she labelled "immersion" in whichsome family members, mostly spouses of the ill person,gradually became more absorbed in the patient. According toLovejoy, immersion starts with a "heightened sensitivity" tothe patient, proceeds through a period of "growing love," andis followed by "fusion" with the patient. Fusion ischaracterized by "bargaining" and "self neglect." Totalimmersion results in "stagnation" and "exhaustion" for thefamily member. The author concluded that family members who20become immersed may be at risk of developing adverse sequelaeto the illness event; however, she conceded that more evidenceis needed to validate the finding's significance.The third idea stemming from these studies is that variousfactors influence the family members' choice of copingstrategies. The status of the disease and the role of theindividual within the family have been associated with thechoice of coping strategies used by family members (Woods,Lewis, & Ellison, 1989). The values of a particular family orthe "family philosophy" have also been identified as factorswhich guide the way that families cope with illness (Thorne,1985). The pattern of coping displayed by family membersduring transplantation may be influenced by certain personal orcircumstantial factors. It is not known whether any of thesethemes are relevant in the BMT experience of family members.Conclusions about Family Members Living with Cancer The foregoing findings result in a broader understandingof the experience of living with cancer. Taken together, thesestudies provide a clearer picture of how the lives of familymembers are impacted by cancer and to a lesser extent, howfamily members manage the effects of cancer on their lives.Limitations to these reports of research must also beconsidered.While periodic review of the empirical research isnecessary to assess what is known about a topic and to providedirection for future research, biases inherent in the reviewmust be recognized when direction is taken from these articles.For example, in the review articles cited above, the research21was organized around "problems" and "issues." When such is thefocus, the resultant descriptions within each category will befocused around a framework developed by the researcher and maynot be representative of the experience of family members. Inaddition, most of the articles contained in the reviews werebased on research which used quantitative designs to focus onvariables of interest to the researcher. In contrast, thedescriptions of living with cancer derived from an inductiveapproach and exemplified in the work of Lovejoy (1986), Thorne(1985), and Robinson and Thorne (1984), provided alternateexplanations for the findings cited in the review articles.,The value of qualitative research methods is that they canreveal previously unidentified aspects of an illness experienceand thus, contribute to a more holistic understanding ofillness.Social Support during Illness Most of the anecdotal articles describing nursing care ofBMT recipients exhort nurses to provide support to the patientand family members during this stressful time or suggest thatthe role of family members is to support the patient (Hutchison& Itoh, 1982; Krumm, 1982; Nims & Strom, 1988; Nuscher et al.,1984; Wessler, 1982). The precise meaning of "providingsupport" is rarely explicated within nursing literature and, assuch, remains a general piece of counsel which provides littledirection for nursing care (Roberts, 1988). Furtherexploration into support literature reveals a wide range oftheoretical explanations of support.22Support is a term which has been used to describe avariety of abstract ideas. In an attempt to offer someconceptual clarity to the term, House and Kahn (1985)identified three aspects of the concept. They described socialnetwork as the structure of social relationships, socialintegration as the existence of social relationships, andsocial support as the functional content of relationships. Itis the sub-concept of social support which has most often beenlinked to family members during illness. The literature reviewon social support which follows is presented according to fourselected categories: the unique support demands arising fromcancer, family members as providers and recipients of support,problems accompanying support, and the dynamic nature ofsupport.Unique Support Demands Arising from Cancer Illness Certain support needs associated with cancer illness havebeen identified in the literature. Wortman (1984) noted twoimportant themes in a review of research on social support andthe cancer patient. First, cancer illness creates unique needsfor support because of the fear and uncertainty that itstimulates in those facing the illness. Second, cancerpatients regard emotional support as especially importantbecause interaction with others provides them with anopportunity to clarify their situation. Findings frominterviews with cancer patients conducted by O'Connor, Wicker,and Germino (1990) support the latter observation of Wortman.In that study, social support from family members assistedcancer patients in their personal search for meaning. No23literature was found which described family members' views oftheir own support needs when faced with cancer.Family Members as Providers and Recipients of SupportWhen illness strikes, the well members of the family areoften regarded as significant providers of support to the illmember (DiMatteo & Hays, 1981; Wills, 1985; Woods, Lewis, &Ellison, 1989). Among cancer patients, spouses are frequentlyidentified as important providers of support (Kesselring,Lindsey, Dodd & Lovejoy, 1986; O'Connor et al., 1990; Woods,Yates & Primomo, 1989; Wortman, 1984). Family members may bepreferred sources of support because they share the stressfulcontext of the illness with the ill person (Woods, Yates &Primomo), have the most sustained contact with the patient(Wortman), or share a communal relationship that fostersfeelings of unity particular to the family (Wills). When thefamily members are viewed as sources of support for patientsfacing illness, this expectation, whether it is fulfilled ornot, is likely to affect their experience.The support provider role may be influenced by gender.Woods, Yates and Primomo (1989) noted the following threetrends: 1) women tend to provide, and to receive, more supportthan men; 2) men have a greater tendency than women to relysolely on their spouse as a source of support; and, 3) a higherproportion of older women compared to middle aged women reporta lack of spousal support. Noting the nurturing roleassociated with women generally, Pearlin (1985) suggested thatgender differences in support are embedded in societal orcultural factors.24Developmental factors also appear to affect the type ofsupport provided to an individual. Ellison (1987) outlined aconceptual model linking human development and social supportbased on the assumption that, "the meaning of 'social support'will vary according to an individual's stage of psychosocialdevelopment" (p. 19). Schulz and Rau (1985) describedvariations in the source of support throughout the life cycle.According to them, young adults receive tangible support fromparents and informational and emotional support most often fromfriends. The spouse is the primary provider of tangible aidand emotional support for middle adults, while friends,colleagues, and neighbours are sources of informationalsupport. Hinds (1985) found that family members caring forcancer patients at home most often sought relatives as sourcesof support, followed by friends and neighbours, and least oftenconsulted professionals.Family members can also be viewed as recipients of socialsupport when illness strikes the family. As noted in the need-based studies, family members often downplay their own needsfor support. Hinds (1985) reported that family members seldomseek help for social and emotional needs and speculated thatthey do not seek support because they are unaware of resourcesor they presume that their needs do not justify intervention.Other explanations for family members' hesitancy to viewthemselves as recipients of support have been suggested. Someauthors have proposed that family members perceive nurseswithin hospital settings as busy and are, therefore, reluctantto seek support for themselves (Hull, 1989; Wright & Dyck,251984). Lewandowski and Jones (1988) suggested that familymembers focus on the needs of the ill person and put their ownemotional needs on hold as a way of coping with the illness.Welch (1981) asserted that focusing on the patient may providesdirect relief of family members' anxiety. Although variousexplanations for the tendency of family members to minimizetheir own needs have been put forward, no substantiation forthese views have been obtained from family members.Pearlin (1985) deduced that the roles of support providerand support recipient are likely mutually compatible withinsupportive relationships. The concepts of "role sets", "normsof helping", "equity", and "reciprocity" may explain thesupportive behaviour exchanged within such relationships."Role sets" refer to the interaction-based family roles whichpredict who is more likely to give support and who is morelikely to receive it within a faiily. The "norms of helping"are those rules which govern helping behaviour within thefamily (Pearlin). According to equity theory, support isoffered in relation to the perceived cost and rewards of doingso within a relationship (Tilden & Galyen, 1987)."Reciprocity" arises from social exchange theory which assertsthat the provision of social support is contingent upon thesupport offered in return (Tilden & Galyen). While there issome empirical evidence that support is mutually exchangedbetween cancer patients and well family members (Thorne, 1985),what is not clear is what motivates this type of supportexchange in families.26When the family members and the ill individual experiencethe stress of illness at the same time, the need for supportand the ability to provide support are likely to be affected inboth parties (Gottlieb, 1981). Many theories provideexplanations of the nature of supportive relationships;however, little empirical support for these theories exists inthe literature about family members coping with cancer illness.Problems Associated with Social Support Various authors have claimed that providing and receivingsupport may be accompanied by problems or negative feelings.Tilden and Gaylen (1987) described "conflicted support" as asituation where the source of support is also a source ofconflict for the recipient. When the amount of supportprovided by one member in a relationship is greater than thatreceived, a "support gap" may develop which leaves thesupported person feeling indebted to the support provider(Wortman, 1984). Such a gap may interfere with the adult'ssense of personal competence in dealing with life's challenges.The acceptance of support may also carry with it a feeling ofbeing a "burden," resulting in diminished feelings of self-esteem and self-efficacy (DiMatteo & Hays, 1981; Wortman &Conway, 1985). Family members of cancer patients reportedfeeling emotionally drained from sustained contact with the illmember and from the lack of reciprocity which characterized therelationship (Wortman, 1984). Tilden and Galyen (1987) cautionagainst assuming that problems exist in all relationships.They point out that many families successfully manage thechallenges of illness; however, the negative effects of support27must not be overlooked.The Dynamic Nature of SupportThere is general agreement in the literature that socialsupport is a dynamic concept that must be- considered incontext. Factors such as the timing of support, the source ofthe support, and the type of support offered, affect theeffectiveness of support in a given situation (Cohen & Syme,1985; DiMatteo & Hays, 1981; Woods, Yates & Primomo, 1989;Wortman, 1984). Pearlin (1985) theorized that support needsare specific, that is, "different problems...callfor...specialized kinds of supports from specialized sources"(p. 47). Furthermore, he asserted that, as the nature andcharacter of a problem changes over time, there is acorresponding shift in the nature and character of the supportsutilized.Echoing a similar belief about the specificity of supportneeds is the construct being developed by Haberman, Packard andWoods called the "demands of illness" (reported by Woods, Yates& Primomo, 1989). Demands of illness are "the events andexperiences that individuals and families attribute to theillness that may tax the family's personal and social resourcesand thus the family's well-being" (p. 46). Demands of illnessare individually perceived and dynamic over the course of anillness. Woods, Lewis and Ellison (1989) capture the meaningof this concept in the following statement: "Indeed, familiesdo not cope with the diagnosis of cancer, but the array ofdemands created by the illness" (p. 31).28Conclusions about the Support Literature The above discussion of support reveals that theliterature is heavily weighted toward deductive theories whichseek to describe various aspects of the concept of support.Theory based research, which uses theoretical frameworks andmeasurement methods which reduce the concept of support tomeasurable constructs of interest to the researcher, alsoisolate the concept of support from the total context in whichit occurs. This point can be raised in any discussion ofdeductive versus inductive methods; however, this argument isstrengthened when the dynamic nature of support is considered.If support is dependent upon a variety of situational factorsand on the perspective of the individual, then researchmethods which allow context and personal meaning to beexpressed will be especially valuable in determining the roleof support in illness.Nurse-theorists interested in the concept of support havecalled for further investigation into the situational contextof social support (Norbeck, Weinert, Cardea, & Lenz, 1987).Kesselring et al. (1986) studied the social network and supportsystem of cancer patients using a questionnaire to collectdata. In the open-ended response section, some respondents,frustrated by the tool, commented that the questionnaire didnot allow them to describe the reality of their social support.The researchers concluded that the complex nature of socialsupport is difficult to capture using quantitative methods.29The existing knowledge base surrounding the concept ofsupport leads this researcher to believe that social supportissues may be a part of family members' experiences during BMT.What is not known is whether family members see themselves assupport providers to the patient and, if they do, how they acton that belief. It is also not known to what degree familymembers experience the negative effects or stresses ofproviding support when (and if) they assume a support role.The traditional view of family members in nursing has beenas providers of support to ill members. When family membersare understood only as the context for care of the patient,nursing actions are directed toward assisting family members tofulfil their role as support providers. In this study familymembers will not be assumed to be providers of support to theill person, but will be regarded as bona fide recipients ofnursing care. This approach will allow the participants todescribe the meaning of support within the context of theirexperience and will provide a basis for understanding supportduring BMT.Summary of the Literature ReviewThe literature reveals that the present knowledge aboutfamily members during cancer illness is fragmented andincomplete. The lack of established concepts and theoreticalframeworks which are applicable to family members dealing withcancer illness creates a piecemeal approach to research in thisarea, as evidenced by the preponderance of atheoretical need-based studies. Only a few reports of qualitative studies have30focused on describing family members' responses to cancerillness. Further descriptive research is required to build anunderstanding of the concepts which are relevant to familymembers dealing with cancer treatment.The knowledge about family members' responses duringcancer illness is incomplete on many levels. First, some ofthe information about the needs is derived from family membersdealing with other kinds of critical or chronic illnesses, sothat it is not clear whether cancer illness affects familymembers in a unique way. Second, most of the research hasfocused on crisis events in cancer illness: diagnosis,recurrence, and the terminal stage, so little is known aboutthe treatment phase of cancer illness. Third, the studies oncancer families rarely isolate the type of cancer illness, sothat differences attributed to the type of illness are notevident. Finally, most of the research on family members hasfocused on variables of interest to the researcher so that theperspective of family members is overshadowed by theassumptions of the researcher.The population targeted in this proposal is family membersaffiliated with an individual undergoing BMT for ahematological cancer illness. A qualitative research approachis used to allow family members to spontaneously identifygermane aspects of the experience and to allow that expressionto be voiced in their own words. This study is designed toyield a description of the experience BMT from the perspectiveof family members. In keeping with that purpose, the studywill be guided by a phenomenological approach to qualitativeresearch. The manner in which phenomenology was interpretedand applied to the research process is described in the nextchapter.313 2Chapter 3: MethodThis study was conducted according to the phenomenologicalparadigm of qualitative research theory. Phenomenology isconsidered both a philosophy and a research method (Oiler,1986). This chapter briefly outlines the beliefs underlyingphenomenology and describes how that philosophy was interpretedand implemented in various aspects of this study's design.The Phenomenological Perspective The phenomenological approach to the acquisition andaccumulation of knowledge differs from the traditionalscientific approach. Positivist-empiricist philosophy, whichunderlies the traditional approach, assumes that reality isstable and can be understood by assuming a neutral and objectiveposture in relation to that which is being studied (Anderson,1989; Woods & Catanzaro, 1988). Research arising from this viewis designed to gain knowledge of the world through reduction andmeasurement of observable variables which have been pre-determined by the researcher (Woods & Catanzaro). In contrast,phenomenology stems from the naturalistic-inductive paradigm inscience which assumes that reality is individually constructed,dynamic, and must be considered in relation to the context inwhich the phenomenon of interest occurs (Lewis & Haberman, 1990;Woods & Catanzaro). When phenomenology is applied in research,the lived experience of individuals is considered the basic unitof research and knowledge is constructed from participants'descriptions of their experience (Oiler, 1986).Phenomenology was selected as the method to address theresearch question. The application of a phenomenological33research method is congruent with the purpose of this study,that is, to sensitize nursing to the experience of familymembers during BMT. The research question is posed at thedescriptive level and, as such, requires discovery andclarification of a specific phenomenon. The philosophicalstance of phenomenology avoids preconceived notions of theexperience but instead, focuses on the perspective of familymembers in the description of that experience. Phenomenology istherefore, ideally suited to address the research question.The phenomenological approach is reflected in certaindesign features of this study. The research was conducted inthe natural setting where the experience took place (Ornery,1983). Family members were interviewed where they felt mostcomfortable, either in their residence or in the hospital.Preconceived ideas about family members' experiences werecontrolled by bracketing the assumptions of the researcher(Swanson-Kauffman & Schonwald, 1988). During data collection,open-ended interview questions were used and all transcribedinformation was accepted as data during analysis to allow thevariables of interest to emerge (Ornery). During data analysis,the aim of describing the experience of family members as awhole was retained, but analysis also included examining partsof the data for similarities and differences (Oiler, 1986). Inthe report of the findings, the natural language of theparticipants was used wherever possible to ensure that thedescription of the experience remained true to the data (Ornery;Oiler).34Issues of Validity and ReliabilityResearch conducted using qualitative methods requiresdifferent criteria to assess validity and reliability of theresults than those applied to quantitative methods. Sandelowski(1986) advised that the criteria of credibility and fittingnessbe used instead of internal and external validity and thatauditability and confirmability replace the criterion ofreliability. Credibility is achieved when the participants andothers outside of the study can immediately recognize thedescriptions generated from the data. The criterion offittingness is maintained when the findings fit the data fromwhich they are derived, contexts outside of the study situation,and the experience of others. Auditability refers toconsistency among the findings. When all three of thesecriteria are met, then confirmability or freedom from bias hasbeen established.Efforts to meet these criteria during the research processincluded several strategies. Prior to undertaking theinterviews, the researcher bracketed her a priori beliefs aboutthe experience by listing them and discussing how they mightinfluence the interview process with a member of the thesiscommittee. Field notes were recorded following the interview,which assisted the researcher to interpret her own behaviour inrelation to the participants during analysis of the data. Theresearcher addressed the criteria of auditability andcredibility by attempting to make the decision trail in thereport of the research explicit, by taking descriptive termsfrom the data, and by illustrating the decision trail using35excerpts of the data in the research report. In second andthird interviews the emerging interpretations were validated orclarified through feedback from the participants.Ethical Considerations Approval for this study was obtained from the University ofBritish Columbia Behavioural Sciences Screening Committee, theNursing Research Committee of the hospital from whichparticipants were obtained, and the overall hospital researchcommittee.Prior to recruitment, each potential participant receivedan "Information Letter to Family Members" (Appendix A) thatclearly outlined the nature and purpose of the study andexpectations of the participants. Written consent was obtainedfrom each person who agreed to be interviewed and a copy of thesigned consent form was given to each participant (Appendix B).In addition, efforts were taken to protect the rights ofparticipants. Participants were assured that confidentialitywould be maintained, that audiotapes would be erased aftercompletion of all scholarly reports, and that information thatmay identify the participant, other family members, or the nameof the hospital would be omitted from the transcripts.Audiotapes and transcripts were stored separately from theconsent forms and only the researcher and thesis supervisors hadaccess to the transcripts. The right to withdraw from the studyat any point during the project was stated at the beginning ofeach interview along with assurance that withdrawal from thestudy would not affect the treatment or care that they, or theBMT recipient, would receive. Participants were assured that36the right not to participate, by leaving the interview,remaining silent, or choosing not to answer any question duringthe interview, would be respected. Before each interviewparticipants were reminded that they had the right to stop thetape recorder or have any section of the tape erased at anytime. On one occasion, the tape recorder was stopped when oneof the participants began to sob uncontrollably and theresearcher sensed that the participant was concerned about thetape running. As soon as discussion resumed, the tape wasturned on with the participant's consent.During the interviews, the researcher was aware thatparticipants could become distressed by relating theirexperience. This knowledge prepared the researcher for thepossibility that the interview may have to be discontinued orthat a referral to an outside agency would be necessary. Inmost of the interviews some emotion was displayed by the familymembers; however, in only one instance was a referral to outsidecounselling services necessary.Selection of Participants The selection of participants in this study was based on anon-probability sampling technique. This approach to selectingparticipants is congruent with the aims of qualitative researchdesigns.Purposive SamplingPurposive sampling directs the researcher to acquireparticipants for a specific purpose (Woods & Catanzaro, 1988).In this study participants were selected according to theirability to speak about the experience of BMT as judged by nurses37working with those family members. When purposive sampling isused, the number of participants is based on the goal ofachieving clear and comprehensive data (Morse, 1986). Thissampling method recognizes that not all participants are able toelaborate on the topic to the same extent and, therefore,directs the researcher to continue to obtain participants andcollect data until no new information appears to be forthcoming(Morse, 1989).Selection Criteria Prior to recruiting participants, selection criteria weredeveloped to guide the initial selection of potentialparticipants. Those criteria included the following statements:Participants must be:1) at least nineteen years of age,2) a family member of a patient who is undergoing BMT for ahematological cancer illness during the present hospitaladmission,3) able and willing to describe the experience of BMT fromtheir own perspective,4) able to communicate in English,5) accessible to the researcher, that is, have plans toreside within the greater city limits for at least oneweek during the ill person's hospitalization.Participants were excluded from the study if they werejudged by the nursing staff as having the potential to becomeemotionally distressed by discussion of their BMT experience orif the transplant recipient was critically ill upon entry intothe research project. A critically ill patient was defined as aperson with a grave prognosis, as determined by a physiciancaring for the patient. The researcher felt that, if the illperson became critically ill during the interview process,38participants would have a sufficient understanding of theinterview requirements that they could judge themselves, whetherthey wished to continue to participate in the study.Selection Process Family members were selected from one BMT unit locatedwithin a large tertiary care hospital in a Canadian city.Nurses on the unit were used as intermediaries between theresearcher and the potential participants. Prior to institutingthe selection process, two information sessions about the studywere provided to the staff on the unit where the study wasconducted. In addition, a copy of the research proposal wasleft on the unit and an "Information Letter to Staff" (AppendixC) was circulated to the nursing staff, unit clerks, dietician,social worker and physicians on the unit. This contact with thestaff ensured that the purpose of the study and the involvementof the nurses in the selection of participants was clear.The researcher met weekly with one of the Assistant HeadNurses on the unit to review the patients and families on theunit against the selection criteria and to identify prospectiveparticipants for the study. A system of primary nursing was ineffect on the unit where participants were recruited. Such asystem ensures continuity of care by assigning a primary nurseand two associates to plan and carry out the patient's care.The primary nurse or one of the associate nurses caring for theill member, who was familiar with the family, was then asked toapproach the family member. That nurse briefly explained thenature of the study, provided the prospective participant withan "Information Letter to Family Members" (Appendix A),3 9determined if they were interested in participating in, orknowing more about, the study and informed the researcher of thefamily member's response. The researcher then contacted thefamily member, reviewed the study, and answered any questions.In all cases where family members agreed to participate,consents were signed immediately and a time for the firstinterview was set up. A copy of the signed consent was given tothe participant (Appendix B).Participant recruitment and completion of the firstinterviews took three months. Two family members who wereapproached to participate declined. One did not give a reasonfor declining and the other stated he did not think he had muchto say about the experience. Three recruited participants wereexcluded because the condition of the ill member of their familychanged before the first interview was conducted. At one pointin the recruitment phase, there was a three week period where nofamily members were available who met the inclusion criteria forthe study. In retrospect, the long recruitment period is notsurprising considering that the sample was chosen from arelatively small target population: family members of patientson a 22 bed unit where the hospital stay of six to eight. weekslimits the turnover of patients. In addition, the unitfrequently contained patients from three Canadian provinces sothat family members were frequently not available forinterviews.A total of eleven participants were recruited for thestudy; however, only eight first interviews were conducted. Theother three participants were excluded when the condition of the40ill member of their family rapidly worsened. In one instance,on the day of the first interview, the participant was told thather son's illness had recurred and that no further treatment wasavailable. He died two days later. On another occasion, theill person in the family was admitted to the intensive care unittwo days prior to the scheduled interview and had passed away bythe time the researcher arrived for the interview. In the thirdsituation, the first interview was set up on the third dayfollowing initial contact with the participant. This man's wifebegan to decline after our initial discussion and died the nextevening, two days before the scheduled interview. In spite ofthe identified exclusion criteria it was difficult to predictthe seriousness of the illness. While all of the ill personsmentioned above were known to have complications following thetransplant, they were considered to be seriously ill but stableat the time that family members were approached. These changesunderline the uncertainty that family members live with as theywatch their loved ones undergo BMT.Characteristics of the Participants The eight family members who participated in the studywere from eight different families. Five women and three menbetween the ages of 23 and 66 were interviewed. Four of theparticipants were spouses of the ill person (two wives, twohusbands), two were mothers and two were siblings. One of thesiblings was not a blood relative, but described herself ashaving an enduring sister-like relationship throughout the longillness of the woman she visited. None of the participants inthe study were bone marrow donors for the ill person. Five of41the participants had post secondary education, one had a highschool diploma and the remaining two had completed grade elevenand grade ten. At the time of the first interview threeparticipants were retired and, of the remaining participants,one worked at a full time job, one worked part time, one hadlost her job, one had been seeking employment but had suspendedthe search at the time of the cancer diagnosis, and onedescribed her work as a housewife and mother. Four participantslived out of province and, of the four that lived within theprovince, one lived outside of the immediate vicinity of thecity. Three participants, then, lived within a reasonabledriving distance of the hospital and were able to stay in theirown homes during the hospitalization period.The ill members of the family were between the ages of 17and 59, three were female and five were male. The underlyingillnesses were acute myelogenous leukemia (3), acutelymphoblastic leukemia (1), chronic myelogenous leukemia (2),and Hodgkin's disease (2). Five people had been diagnosed withcancer for less than six months previous to transplantation, oneperson had the illness for about a year, and two people hadtheir illnesses long term (7 and 10 years each). The treatmentsincluded five allogenic transplants, of which one was from anunrelated donor, and three autologous transplants, two of whichwere stem cell transplants. Only two of the ill family membershad not previously been treated with chemotherapy or radiationprior to the conditioning regime for BMT.42Data Collection Three stages of interviews were conducted to collect datafor the study. The first interviews, applied to all eightparticipants, focused on developing rapport and encouraging adescription of their experience. Following analysis of the datafrom these,first interviews, second interviews were conductedwith seven of the eight participants to clarify and develop thedescriptions. Finally, four participants, who were consideredthe best informants, were interviewed a third time to ensurethat the participants were able to identify with theresearcher's description and that all salient aspects of theparticipants' experiences were included. In total, nineteeninterviews were conducted.Ten in-person interviews were audio-taped resulting inapproximately ten and a half hours of taped interviews whichwere subsequently transcribed verbatim. The remaining nineinterviews were conducted via telephone. Two of the telephoneinterviews were audiotaped and transcribed; field notes wererecorded for the other seven. Field notes were also collectedfollowing all interviews to note the emotional tone of theinterview and non-verbal communication of the participants.Stage one interviews occurred between the day before thetransplant and the 69th day following the transplant (day -1 andday +69). Six participants were interviewed within two weeks ofthe BMT and two were conducted more than four weeks after theBMT. The time elapsed between the first and second stageinterviews varied from six weeks to four months. All of thesecond interviews were conducted after the ill person had been43discharged from hospital. Third interviews were conducted twoto three months following second stage interviews.All participants were given the choice of being interviewedin their place of residence or in an office within the hospitalclose to the unit. All but one participant chose to beinterviewed at the hospital. An open interview format andtrigger questions were employed to encourage exploration of theparticipants' experiences. The trigger questions were derivedfrom this study's research questions and influenced by theliterature review (see Appendix D).Data Analysis The goal of this study was to effectively communicate anaccurate, coherent, and holistic description of the experienceof family members during BMT. With this in mind, analysis ofthe data was conducted using the basic method described byGiorgi (1985) and elaborated on by other authors. Key steps ofthe method used to analyze the data are reviewed in theparagraphs which follow.Unbiased descriptions of the experience of BMT wereobtained from family members using interview techniques whichallowed participants to identify the relevant aspects of theirexperience and to describe the experience in their own termsfrom their perspective. Questions asked during the firstinterview were reviewed by a member of the thesis committee andsuggestions for improving the way in which the questions wereasked were incorporated into subsequent interviews.Interviews were then transcribed by the researcher,providing an opportunity to become familiar with the content of44each interview. The researcher then read the entire transcriptwhile listening to the audiotape to get a sense of the wholeinterview. Transcribed field notes were consulted to recall thesituation surrounding the interview and the impressions of theresearcher at the time of the interview. Transcripts were thenre-read more slowly and the meaning units which emerged from thedata were noted. A meaning unit was considered a section of thetranscript which contained a singular idea; it represented apart which could be discriminated from the whole transcript, butwhich depended upon the context of the whole transcript for itsmeaning. Although meaning units derived from the transcriptswere a reflection of the researcher's perspective (Knaack,1984), the researcher attempted to use labels from theparticipants' own words to describe those units. As subsequentinterviews were read and themes noted, previously identifiedmeaning units were transformed to reflect more general themesarising from the data. Each theme was then reviewed and thepatterns within them and the relationships among them werenoted. As a sense of the whole developed, the meaning of eachunit were transformed from the everyday language of theparticipants into the language of nursing science.Transformation involved the processes of reflection andimaginative variation (Giorgi, 1985). During these processes,each meaning unit was considered separately in relation to allthe possible meanings the unit may represent within theexperience until a satisfactory meaning was discerned (Knaack).The transformed themes were then synthesized to form adescriptive structure of the experience through the process of45writing the description. As Swanson-Kauffman (1986) noted, theprecise mechanism by which the accounts of the participants weresynthesized into a general description of the experience wasdifficult to determine prior to the analysis of the data.Swanson-Kauffman and Schonwald (1988) described the process ofphenomenological analysis thus: "Intuiting concepts...is anexercise that involves continuous critical reflection anddiscussion of concepts as they emerge from the researcher'sexperience of the multiple informants' reality" (p. 103).Summary This qualitative study was guided by phenomenologicaltheory. Participants were chosen according to their ability andwillingness to describe their experience while an ill members oftheir family underwent BMT. Eight participants were interviewedin a total of nineteen interviews over a six month period. Datafor the study consisted of transcribed audiotapes and fieldnotes from the interviews. Analysis of the data resulted in thedescription of the accounts of family members which follows inChapter four.46CHAPTER 4: THE FAMILY MEMBERS' ACCOUNTSThis chapter presents the BMT experience as described bythe eight family members who participated in the study. Threeinterrelated themes arose from the accounts and provide theframework for the following description. Although the themesare interconnected, each theme is discussed separately tofacilitate presentation of the findings. Variations within thethemes reflect the unique viewpoint and circumstance ofindividual family members and are illustrated through excerptsof the interviews.The description begins with an exploration of the multiplemeanings of BMT shared among the study participants. Fromthese multiple meanings two major challenges faced by familymembers emerge. The second section presents the challenge ofuncertainty and the third section examines the challengeassociated with disruption. Thus, multiple meanings,uncertainty and disruption comprise three themes around whichthe experience of family members during BMT can be understood.Multiple Meanings of Bone Marrow TransplantationFamily members in this study regarded BMT as much morethan a medical treatment marked by a period of hospitalization.Although the meaning of BMT constructed by each family memberwas unique, shared meanings arose as the participants recountedtheir experiences. Five descriptive motifs captured themultiple meanings of BMT that emerged: BMT as a life-saving andlife-threatening procedure, a radical treatment, a pioneeringventure, a period of unpredictable recovery, and a sudden,unexpected interruption.47Life-Saving and Life-Threatening Procedure All participants held a dual view of the transplant: theyrecognized the capacity of BMT to save the life of the illperson and, at the same time, threaten that life. Varyinglevels of optimism and pessimism about the procedure werereflected in participants' comments about the decision toproceed with the transplant. For example, one family memberrecalled focusing on the life-saving potential of thetransplant when a donor was found.We were all in favour of it and discussing it...I was soexcited that there was a transplant... nothing matteredanymore...it was just getting out here.On the other extreme, another family member conveyed herpessimism about the transplant as she discussed her sister'sdecision to undergo treatment.I also felt very sorry for her and thought it was reallyterrible that she was so innocent, and was going out thereto be a victim at somebody else's gain. I thought they're...just going to do what they want, she's just going to bea piece of experimental lab meat, she won't matter andshe's going to die anyway.Others tempered their generally optimistic view of BMT with therecognition that the treatment may not succeed.When [brother] found a favourable donor that was anotherstep that you had to kind of keep in perspective. A lotof people got their hopes up right away...you have totouch base with reality once in a while, make sure you'renot getting in over your head.Most of the participants indicated that the decision to proceedwith treatment was ultimately based on the belief that a BMTcould extend life or provide a cure. Frequently, familymembers displayed confidence in the life-saving capacity of thetransplant in front of the ill person while harbouring doubts.48Pessimism about the treatment was often expressed indirectly.A few participants expressed their pessimism in relation to thechoice they would have made, had the illness been their own.I would never go through it myself even if I was told itwas my last chance. You have to be very strong to gothrough it.Other family members felt that both the illness and thetreatment were life-threatening and, as a result, describedtheir pessimism in terms of the best decision amongunattractive alternatives.You've got no choice, you have to do this, but potentially...this [the transplant] could be fatal too.To family members, BMT simultaneously represented a cure forcancer and a threat to the life of the ill person; however, thedegree to which family members focused on each possibilityvaried.Radical Treatment Bone marrow transplantation was viewed by someparticipants as a radical treatment and to them, that featuredistinguished BMT from other illness treatments.It's much more drastic, it seems very radical...you'repoisoning the body to a point where you're almost killinga person...and the autologous stuff too...I mean you'restill destroying the system in the same way...that wholeidea that...you're putting into your body all sorts offoreign stuff that's designed to eradicate an entiresystem...to cleanse it. I don't even look at it ascleansing, that's an improper choice of words, I look atit as just destroying... that's basically what it does.So yeah, it's unique.Some participants adopted this view of BMT from the outset:others became aware of the harshness of the treatment moreslowly. One man described how his view of BMT as a radicaltreatment gradually developed as he began to understand the49effects of treatment.They explain the chemotherapy is designed to go in thereand destroy the bad cells, the unfortunate part is that itdestroys part of the good stuff too...that's sort of themumbling in parentheses part [chuckles]...but therealization afterwards, to me...I've only come to put itinto perspective recently.Family members used different observations when appraisingthe treatment as harsh. One woman based her assessment of theradical nature of the treatment on her understanding of thedestructive effect of the conditioning regimen on her husband'sexisting bone marrow.Something...in me just rebels, I think because it seems anextremely unnatural procedure. Not the infusion of thenew bone marrow but...that they rationally, wilfully takethese pills that destroy something that's so essential toyour survival.... It seems to me strange to completelydestroy the core of your being.Others became aware of the treatment's harshness as theywatched their loved ones reacting to the treatment.I didn't think it would be quite that severe, I didn'texpect that as a reaction from the chemo, I mean extremenausea and general poor health I expected...but not thatbig a problem with his mouth... which made it reallydifficult. I mean you can't speak, you can't drinkanything, you can't hold anything down.Sometimes the judgement of a harsh treatment arose when theactual symptoms and suffering of the ill person exceeded familymembers' expectations' of the effects of the treatment. Oneparticipant, a health care professional himself, commented thateven though he had read medical journals and felt he had someidea of what to expect, he did not realize that the procedurewas so difficult. When asked what made it so tough heresponded, "the physical suffering and the pain". The spouseof another transplant recipient, who had received numerous50cancer treatments over the long course of his illness,described BMT as, "the most rigorous and the hardest treatmenthe went through". Rarely did study participants overestimatethe effects of BMT.Pioneering VentureFamily members also described BMT as a pioneering venture,a view supported by two factors. First, family membersperceived that BMT was an unrefined medical treatmentundergoing scientific development.It's like...back in the days of...yore when nobody knewanything...because this is all pioneering stuff... Acouple years ago they didn't...load people up with thisstuff... they only started to figure this stuff out....That's kind of funny how I've put it in that perspective,it seems almost barbaric, what they're doing is...experimental.Indeed, some participants felt that the current procedure maynot be the preferred way of treating leukemia in the future.There must be something in a healthy bone marrow or a...healthy immune system that can recognize leukemia andfight it...I would find it a lot more logical to try tozero in on that...expand it and boost it somehow, dosomething...that makes him kill the leukemia rather thankill something in him.Second, they believed that BMT was new to mainstream medicalpractice. Most participants indicated that they knew verylittle about the treatment prior to this experience. Moreover,they perceived that a limited amount of information about BMTwas available in the popular media and that very few hospitalsperformed the procedure.It's still a very immature procedure, it hasn't advancedto the point where it's routine. Doctors and nurses andeverybody are still learning from it and I think that'sthe thing. A lot of people want to learn more about itbut it's just not a widespread procedure.51Family members differed in the way they regarded thepioneering status of BMT. For some, it represented the limitsof medical knowledge.As a scientist I feel very dissatisfied. Why at thisstage there is no test to find out [if the] bone marrow[is] really in the right position or not?Others appreciated the medical advances that made a curativetreatment available.The transplant is really giving a second chance on things,research has provided that, it's unique because it's beengiven to you. Not like a brain tumour where there isnothing to be given, no transplant, it's not the same[paraphrased from field notes].The view of BMT as a relatively new and unrefined treatmentcreated frustration for some participants while others believedthat BMT's pioneering status introduced a previouslyunavailable possibility.Unpredictable RecoveryFamily members characterized the recovery following BMT asunpredictable and provided various examples that supported thisview. Even though family members indicated that they had beencounselled about possible side effects and complications, theybelieved that the actual occurrence of those events and theirultimate effect on the transplant recipient was difficult foranyone to foretell. Family members described the effect of BMTas highly variable, affecting each individual differentlydepending on their circumstances.The doctors have assured me that every person is differentand what will happen to your son is going to happenregardless of whether it's happened to somebody else'sson. They can't tell me what's going to happen. Theydon't know.Furthermore, the successive occurrence of symptoms made it52difficult for family members to discern a pattern in therecipient's recovery. Family members frequently commented onthe erratic nature of convalescence.I don't see any trend...[she] gets sick for a few days andthen you see it's getting better.... There's no sign...just going up and down is really hard.You [get] one small step forward...you watch the bloodcounts...they come up one day and the next day it's a stepback...you plod along a little bit forward and the nextday you drop back again...instead of seeing like arecovery, like somebody who's had a broken bone...wherethey're able to recover from it slowly but surely...younever know.Even when the recovery of the transplant recipient appeared tobe on an upswing, the possibility of complications wereforemost in the minds of family members. One woman who alreadyhad been disappointed by the readmission of her son days afterhis initial discharge stated, "we have to keep in mind thatit's not over, anything could happen". Each of these features,the variable effect of the treatment on patients, the up anddown pattern of recovery and the constant threat of possiblecomplications contributed to a sense of unpredictability duringthe recovery period.Sudden, Unexpected InterruptionThe transplant experience interrupted the lives of allfamily members in some way. In situations where the BMTclosely followed diagnosis, BMT was one part of the largerinterruption associated with the cancer experience. Insituations of long-standing diagnosis, the focus of theinterruption tended to centre around the BMT andhospitalization.53Family members distinguished the interruptions caused byBMT from other daily mishaps in three ways. First, the suddenand unexpected nature of the BMT interruption had a markedeffect on the lives of the participants, particularly when thedecision to transplant and subsequent admission to hospitaloccurred rapidly, and with a sense of urgency. Even when theBMT procedure was planned in advance, family members perceivedthe occurrence of events as sudden because they generally hadvery little time to relocate to the treatment centre once a bedbecame available.I mean you're going along and everything...is going alongsmoothly and all of a sudden, one of them's sick. And itjust came out of the blue.He was in that hospital within about two days or so, Imean it was bang, bang, bang, bang. If he had time tothink about it he may have said no.Second, BMT interruptions carried with them seriousconsequences related to the critical nature of the illness andtreatment.We were just going along fine...and this has clearlycompletely upset...what we thought our lives...I meanthere was [my husband], forty one. You don't actuallythink of serious disease hitting you for a very long time.Finally, BMT interruptions had a pervasive effect on familylife.The obvious thing is that it's unsettling totally...there's no normal routine anymore. So the whole routineof your life changes...I guess that's the major effect.The sudden and unexpected nature of BMT, the graveness of theillness and treatment, and the far-reaching effects on thefamily, combined to create a major interruption in the lives offamily members experiencing BMT.54Thus, the participant's accounts revealed that familymembers attributed multiple meanings to the transplantexperience. The five descriptive motifs of BMT illuminated thecommon meanings of BMT among family members and providedinsight into the challenging aspects of the BMT experience fromthe perspective of family members.Furthermore, family members' descriptions of BMT confirmedthat the treatment was shrouded in a great deal of uncertainty.The dual view of BMT as a life-saving and life-threateningtreatment acknowledged an uncertain outcome. The recognitionthat the remedy for the ill person's cancer was also a radicaltreatment added to uncertainty by underscoring the risk. Theview of BMT as a pioneering venture contributed to theperceived uncertainty by underlining that medical science wasunable to provide a guaranteed outcome. The erratic pattern ofrecovery further supported family members' perceptions of anuncertain outcome. The descriptive motifs representing themeaning of BMT for family members provided a way ofunderstanding how the perception of uncertainty was constructedby family members during this experience.The descriptive motifs also alluded to the dramaticchanges faced by family members when BMT was introduced intotheir lives. The sudden and unexpected interruption associatedwith BMT, along with uncertainty, converged to create a senseof disruption. All aspects of the family members' lives weretouched and, in some way, changed by the BMT experience. Whenthe descriptive motifs arising from the interviews are55considered as a whole, the sense of BMT that ensued was that ofa treatment event surrounded by uncertainty which causeddisruption in the lives of family members.The Challenge of Uncertainty"Not knowing" what would happen during the transplant wasdifficult for all family members, and for some it was the mostfrustrating aspect of BMT. At times, frustration with "beingin limbo" escalated to the point where some participants wishedfor more certainty, even if that meant the demise of thepatient.You think God let's get this over with one way or the other [emphasized when spoken]. I mean don't let it hangin the middle for so goddam long.Most of the time; however, uncertainty was preferred by familymembers since it allowed them to hope for recovery during atime of great risk.There are many days when you think is this ever going toend ...but I don't want it to end if he's going to die soyou immediately think maybe it's better to go on likethis...not knowing rather than having the end that youdon't want.Living with uncertainty meant that family members had to first,accept uncertainty; second, acknowledge the fear they felt as aresult of uncertainty; and, third, learn to live with thatfear.Accepting UncertaintyComing to terms with uncertainty required family membersto recognize the positive and negative possibilities inherentin their situation. Two family members referred to thisprocess as "accepting" the uncertainty.56You have to...be able to understand and accept exactlywhat's going on, whether it's good or bad.... You stillhave to look forward when you have a problem but then,when the good times are there you have to keep in mindthat the little stuff can crop up and it's not all overyet.Family members applied certain measures to themselves andothers when judging whether uncertainty had been accepted.Those who had accepted uncertainty were more likely to bepositive, realistic without excessive worry, and able to talkabout all possible outcomes openly, whereas those who had notaccepted uncertainty were often overly positive, veryemotional, moody, confused, in a state of denial, or reluctantto discuss the possible outcomes frankly.Participants also described how they accepted differentaspects of uncertainty at different rates. One woman graduallyaccepted the uncertainty created by her son's cancer diagnosis,the BMT treatment, and finally the effect on the whole family.Another participant recounted how he quickly came to terms withthe possibilities posed by BMT. He attributed his ability to"keep it all in perspective" and at the same time to "keep agood outlook" to his past experience dealing with terminalillness in the family.One factor which helped family members accept uncertaintywas the approach to sharing information used by health careprofessionals. Prior to the treatment, physicians clearlyoutlined the benefits, risks, and possible complications of theBMT and continued to share their assessment of the situation.Family members felt that there was no attempt on the part ofprofessionals to "whitewash the situation" nor were they unduly57"depressing" about the ill person's prognosis. Participantsappreciated this balanced presentation of the circumstancesbecause it helped them accept uncertainty.[The physicians] were...really thorough andstraightforward. They didn't try to candy coat things allthe time and they weren't really depressing about it.They laid it out on the table, that's the way it is.... Ireally thought it was good because...if you're able tounderstand it, you're able to cope with it a lot better.Thus, "accepting" uncertainty was a process of recognizing andinternalizing the knowledge that the transplant recipient couldbe cured or could die as a result of the BMT; a process thatwas aided by the way health care professionals sharedinformation with family members.Fear Associated with UncertaintyOnce participants recognized that they could not alter theuncertain conditions surrounding BMT, they had to deal withtheir responses to uncertainty. When asked directly how livingwith uncertainty affected them, participants reported that theytended to focus on the patient and not on themselves.You don't spend a lot of time...thinking...how you'refeeling in this exact moment 'cause it's not relevant, itdoesn't matter what you feel like. I mean you just keepgoing and you keep the ball rolling for everybody. That'swhat I find is the most important thing.The emotional responses of participants were most oftenrevealed when they talked about the effect of the BMT on therecipient. Family members depicted their "good days and baddays" in relation to the status of the ill person. "Good days"were precipitated by signs of recovery, the absence ofuncomfortable symptoms, or the presence of a positive attitudein the ill person. On "good" days family members felt moreconfident that a positive outcome would prevail.58There's a good day when you walk in and you see the whiteblood count's gone up and you think oh wow, this is reallysomething.... There's good days when you get off theantibiotics, there's a good day when they say you've hadyour sixth day of chemo and that's it and...when youfinally can eat a meal without vomiting. That's a goodday.Conversely, on "bad days" the ill person displayed newcomplications, annoying or painful symptoms, depression, or anegative attitude. Family members became more pessimistic andfearful on these days because they perceived that the patient'srecovery was threatened.You can also have bad days...in your head, where youwonder is he ever going to get better.... Yesterday I hada bit of a bad day because of this poor girl dying threerooms up...you can't help but think...maybe that's gonnabe him...I mean it is a life and death situation.Another bad day was [when he] had a platelet transfusionand got...rigors, just uncontrollable shaking, and it'svery frightening for the person going through it and it'svery frightening for me.Fear was the predominant emotion which came through in thefamily members' accounts. The life-threatening potential ofthe treatment was a major source of fear for all participants,although that fear was not often directly expressed.When [she] was going...in for the chemotherapy...that wasvery frightening, especially since we understood that thechemotherapy was as deadly as the disease in the firstplace and that undergoing...it actually kills people.... Iremember the day that she got the call that she shouldcome in immediately because there was a bed, that wasextremely frightening.A tendency to suppress feelings was evident in all the familymembers' accounts. One participant revealed that his mostdistressing feeling, and the one he concealed from others, wasthe fear that his wife might die.59Every once in a while, you have to admit that this couldresult in this person dying....that's basically what itcomes down to. And then...you...think of theramifications of that.Participants described various situations where they attemptedto suppress their emotions. Many felt that it was important torestrain public displays of emotion and most of theparticipants reported hiding the full expression of theirfeelings from the ill person, other family members or friends.When feelings were continually suppressed it was more difficultfor family members to acknowledge their fear. Threeparticipants admitted that talking about their experience inthe interviews enabled them to recognize the full extent oftheir fear for the first time.I think that when...it does sink in--which it doesn'talways, I mean it's sort of a protective mechanism inpeople to shield yourself from the horror of it all--Ithink it's mostly fear.The most common pattern of emotional response displayed byfamily members was one of vacillating between optimism andpessimism, or hope and fear.There's very severe ups and downs because you feel veryoptimistic at one point...and the next thing...you getsome statistic.... I find that the optimism and depressiongoes in waves. Like one day everything is great and...youhave that optimism that...it'll be done with soon enoughand that will be good but then, boom...the next daysomething just kind of hits you.Given that BMT is perceived as both a threat and a cure andthat the emotions of participants were closely affiliated tothe mood state and physical status of the patient, it is notsurprising that family members' emotions wavered in this way.The emotional responses of family members were reflections ofthe uncertainty surrounding BMT.60Balancing Hope and FearOnce family members acknowledged their fear they had todeal with it. All participants described attempts to balancethe fear-inducing aspects of the experience with hope-inspiringaspects.I kind of set myself up to expect the worst but hope forthe best y'know, that's about it.Many family members proposed that achieving such a balance wasa prescription for coping with BMT.I think that's part of our main task, is learning to livewith the fear and with the...down side of it all.When describing how they coped family members outlined variousmotives and strategies for balancing hope and fear.Motivation for Achieving Balance The motivation for achieving emotional balance wasdescribed in terms of the benefits of retaining both hope andfear and the consequences of being overly positive orpreoccupied with fear. Hope was viewed as beneficial becauseit encouraged a positive attitude in the ill person andpromoted the healing process.I honestly don't feel that it's strictly a medical...treatment...you do have to develop a more positive way oflooking at it...a positive frame of mind promotes healing.Fear was regarded as healthy because it tempered expectationsand prompted family members to be realistic about the possibleoutcomes.I think the down side of that [being positive] would bethat you would never be prepared...if you say yes I can,yes I can...and you've got cancer, and you don't get youraffairs in order...you leave the people you love with anawful mess on their hands.... I call it realism.Furthermore, some family members felt that, since fear was a61natural response to the circumstances, it must be acknowledged.It would be very strange to go into something like thiswhile trying to ignore those risks...when you really facethose risks you can't be other than...depressed andfrightened and anxious...that's...quite normal. I wouldbe much more afraid...of people taking it all verypositively.Thus, hope and fear were perceived by family members as havingdistinct and important purposes.Family members cited various consequences of allowingeither hope or fear to dominate. Two participants describedthe problems which arose when other family members adoptedunwavering positive attitudes.[His mother] shows it by being extremely positiveabout things. We're just not going to discuss anypossibility that this might go wrong, I just knowit's going to be alright. I find that not at allsupportive because I can't tell her I'm really afraidor...we're having a really bad day...because I knowthat the response is going to be...nonsense,everything's going to be alright, just don't worryabout it.... I know that underneath it she'sextremely worried...there's obviously a lot of fearthere...and anger.This position of "being a cheerleader" masked fear and blockedthe ability to provide support to others. Often thoseindividuals described as "cheerleaders" spent limited time withthe transplant recipient during the treatment. One womanrecounted how her husband's fears were heightened when he spentmore time in hospital and he became increasingly aware of theseriousness of his ill son's complications. That increasedawareness made it more difficult for him to deny his fear.Participants equated "not coping well" with becomingovercome with pessimism. One woman recalled how, at one pointduring the transplant, intense fear led to hopelessness anddespair.62I couldn't stop crying because I just thought it was sohopeless...there was no way she was going to make it.When fear escalated, family members became self-centred andless able to support the ill person, a situation that troubledthem deeply.Sitting here ...dwelling on it...or having self pity orfeeling sorry for yourself doesn't do anything for you orthe person that's sick.Most participants recognized that, to cope well, neither hopenor fear could be allowed to dominate the psyche. As a result,all family members tried to regulate hope and fear to achieve abalance. To the family members in this study, balance was arequirement for living with uncertainty.Strategies for Balancing Hope and FearEach family member used a variety of strategies to balancehope and fear. These strategies were influenced by theirpredisposition towards optimism or pessimism. One familymember who viewed being positive as the more challenging partof achieving balance, felt that the BMT period was laden withnegative aspects.I think you almost have to make some of it into a goodsituation or you just couldn't make it through it...youhave to...think of...the good things and...dwell on thepositive because there are a lot of negative that's forsure.This pattern generally prevailed. Family members who tended tobe optimistic found acknowledging their fear more difficult,whereas those who were more inclined to be pessimistic foundgenerating hope more demanding. Two family members offeredexplanations for their orientation towards hope and fear. Oneman believed that his optimism about the transplant stemmed63from his attitude that "things in life generally work out".Another participant, who was very dissatisfied with the medicalcare she received during her own illness, cited that experienceas the major reason for her pessimism about BMT. The challengein balancing hope and fear was partially predicated on thefamily member's predisposition towards optimism or pessimism.In the accounts, five types of strategies for balancinghope and fear were described. Participants used cognitivestrategies, positive signs, information, faith and emotionalsupport to regulate their emotional state. Cognitivestrategies refer to the ways that family members focused theirthoughts on positive or negative aspects of BMT to balancetheir perspective. Diverting attention away from theirfeelings was one way that fear was avoided.The thought never escapes your mind that it could be fataland this could be it...you try not to dwell on it, youkeep it on the back burner...basically don't think about...what it's going to be like for you to go through it.Sometimes family members focused on hopeful aspects of thesituation to counter "negative thoughts".The first thing I do when I get a hint of it I...think ofsomething upbeat to say...think of something positive...try not to dwell on it any [emphasized when spoken]amount.At other times negative information was transformed into a morepositive view. An extreme example of this is evident in thefollowing excerpt, where one man recounts how he was able tofind a positive side to the long series of complications hisbrother endured.64He ran into so many...symptoms and side effects but it wasgood that it all seemed to happen while he was in thehospital...they wouldn't all happen at once...which waskind of bad in a way, I mean it was depressing, you justgot over one hurdle and...they throw up another one infront of you but it was nice to get it over with.The opposite of the above strategy was also used. When signsof recovery were evident, family members shifted theirattention towards the bleaker possibilities.If he's having a good day you sit yourself down and yousay look, this could crop up and it could get worse. Whatyou're gonna have to do if it does, is cope with it.Cognitive strategies fulfilled various purposes. They wereused by family members to divert attention from fear, focus onmore hopeful events, transform negative views to more positiveviews and, less frequently, to focus on the negativepossibilities as a way of maintaining "reality".Searching for positive signs was a second way that familymembers maintained the balance. Most participants paid carefulattention to the progress of the patient, a process one womanreferred to as "reading the situation". Signs of recoverygenerated hope for family members.Then some little thing happens that encourages you...thedoctor will come in and say well his blood count wasbetter today and you think...so there is one good thing or...he's not sick for twenty minutes whereas before he'sbeen sick every ten minutes.When few positive signs were readily evident, family membersrelied on health care professionals to interpret laboratoryresults and offer their opinions. These actions by the staffwere greatly appreciated.65I like the way they put her blood counts...up there...Ican see that something's happening, in a language that Ispeak.... I can see that this is going up and this isgoing down, I don't know if it's good or if it's bad but Iget the feeling that something's happening. I would neverhave thought that that [sic.] was a comfort.Certain signs were more significant indicators of recovery tofamily members. Hearing of another person's successfulrecuperation was an immense source of hope for most families.If anybody's got some good news of any kind like ifthere's somebody you know who's getting out, or gettingdischarged ...it's good to...see somebody else get thehell outta here, to see somebody else do better...Thathelps a lot.For others, visible signs of recovery were especiallymeaningful.You can't visualize...how a white count comes up but...youcan see a person start eating or...get up and move around,that's a visible sign things are improving...It's thatmuch of a boost when you can actually see the finalproduct.Many viewed the return of normal body functions in thetransplant recipient, as particularly significant indicators ofprogress.You know the person is doing that much better when theyare able to eat on their own and don't have to rely on theIV... it just seems to be a sign of strength and recovery.The third mechanism used to maintain balance was seekinginformation. Early in the treatment family members oftensought information to counter fears brought on by theirspeculations about what might happen during the treatment.I wanted to know exactly what was going on...to keep yourown piece of mind, to keep yourself from worrying all thetime. You like to know what's going on and what possiblycould go wrong and have a real good understanding.... Ifyou don't know what could possibly happen...then you startthinking the worst off the bat.66For some participants information decreased their fear bydiverting attention from the emotional realm and focusing it ontechnical aspects of the procedure.As we became more and more familiar with the wholescenario ...[wej became very objective, so it's notsubjective any longer, so you move away from...theemotional side and...get into all this body chemistrystuff... Then you get away from the more depressive sideof it and you can...see that there's some light at the endof the tunnel.Participants were generally pleased with the information theyreceived during hospitalization; however, they did recall someinstances when information was withheld, unclear oroverwhelming which resulted in escalating their fear. Thetiming, pace, and amount of information were important factorsin determining the effect of information on family members.The staff...tell you things in bits and pieces...I findthat they're excellent at sort of reading what you need toknow at a particular time and saying as much as you needto know and sort of building up that way.Sometimes participants purposely avoided information becausethey felt that "not knowing" was less likely to arouse theirfears.I certainly never...said is this kid going to...be cured,is he going to live...are we going to have to do somethingelse or...go through this again.... I know our familydoctor would tell me...but I'm not ready to...ask himbecause I don't want to know the answer...in case it'snegative.Family members tended to ask questions that they were ready tohear the answers to and regarded efforts of health careprofessionals to gauge the amount of information they couldhandle as helpful. Receiving information also generated hopefor family members. One woman, aware that she often asked thesame questions of physicians, stated that obtaining the same67answers, even if those answers reinforced the uncertainty,reassured her and fostered her hope.Fourth, faith helped family members achieve a sense ofbalance by generating hope and diminishing fear. For thosefamily members who had faith in medical technology, the healthcare system, and the staffs' abilities, the care, reassurance,and optimism of the health care team inspired confidence.I think if there's anything we sort of cling to it's whatmedical science can do for us.... Really, we do think thatthe facilities and the treatment that we're getting arethe best that are available.Religious faith generated hope for those who had establishedbeliefs prior to the transplant. Some participants, who didnot have strong faith, wished they had stronger religiousbeliefs to turn to, but found it difficult to establish thatfaith if it had not been previously instilled.I feel kind of sorry and regret that we don't really havea strong religion...if both of us had a certain religion...I am sure it would help very much.Sometimes faith was grounded in the family member's own beliefsystem. One man described how he focused his thoughts towardsthe hope that his wife would recover. He distinguished thisprocess of "wishing" from religious beliefs.I don't want to bring in religion. Hope means...I justwish that's all...I'm not really praying...to somebodyplease...make her well. I'm not such a believer so...Ijust hope, but wishing is not religion.Despite the benefits of having something to believe in,participants did not adopt a blind faith. Those who expressedfaith in the health care system balanced that faith byrecognizing that the treatment was not infallible.68The people here are...very capable...it's basically thebest care that they could have as far as I'm concerned...even though you are in good hands it might not work.One woman spoke of how she tempered her expectations of God byaltering the focus of her hope, thereby enabling her tomaintain her faith regardless of the outcome of the BMT.I used to pray that [ill husband] wouldn't die and then Ithought...maybe that was unfair so now...I don't actuallypray that he won't die. I pray...we have the tools tocope ...that he doesn't suffer.... I guess that's...givingmyself an out because I don't want to lose faith in God.Each of these sources of faith provided family members with abasis for hope. Maintaining flexibility within that faithallowed the fears of family members to be acknowledged at thesame time.Finally, support from family, friends and professionalshelped some participants deal with their fear. One womanexchanged support with her ill husband.We don't very often...get discouraged on the same day...soif one person is down the other person usually tries tobring...the person who's upset back to...I shouldn't saynormal, but back to an optimistic outlook.Only one example of this level of mutual support was recordedin the interviews. Generally, family members reported limitedopportunities to share their feelings, although manyparticipants felt that such an opportunity would be beneficial.There's a couple of people that you feel that you can talkto and it's somewhat therapeutic but I find that generallyI don't. Somebody like [ill wife]'s mother who is rightthere living with us...I mean I've known...[her] mom along time too and we tend not to discuss how we're feelingabout the whole thing, I guess it's too personal orsomething.Those that did receive some emotional support from theirsupport group during the transplant often found that there werelimits to that support.69I feel I can only let out so much but yeah, I can open upand I feel comfortable opening up in front of them[friends] but then [I] kind of close down again.Two family members indicated that they found the researchinterview helpful because it provided a rare opportunity toreflect on the BMT experience and explore their feelings.For family members in this study, seeking emotional support wasone strategy for maintaining a balanced view that was limitedby the availability of appropriate support.Thus, family members used various strategies to generatehope and alleviate their fear. The underlying aim was toestablish a sense of emotional balance during a time of greatuncertainty.From the perspective of the participants in this study,uncertainty was a significant aspect of the BMT experience.Recognizing that there was nothing they could do to alter theuncertainty was the first challenge for family members. Oncethey accepted the uncertainty, they were faced withacknowledging their feelings about BMT, in particular theirfear. The final challenge then became learning to live withthe fear, a process which involved balancing the hope of therecipient's survival with the fear of their demise.The Challenge of Disruption Family members, recounted a sense of disruption thatfollowed from the sudden and unexpected interruption caused bythe BMT and the resultant uncertainty. Those disruptions, andthe subsequent adjustments that family members made, centredaround day to day life, relationships, and life outlook.70Adjusting Day to Day Life Adjustments to daily life within the family wereprecipitated by a shift in the focus of concern towards the illperson. For all participants of this study, that resulted intaking on a support role in relation to the patient whichdemanded changes in day to day life. The ease with whichfamily members adjusted their daily life was dependent uponthree factors: 1) the extent of the felt disruptions and,therefore, the required adjustments, 2) the meaning of thoseadjustments to family members, and 3) the family members'abilities to elicit and accept offers of practical support.The degree of disruption that family members experiencedin their daily life varied according to the responsibilitiesthat family members maintained. Two patterns of adjustmentemerged from the different circumstances of the participants.Those who lived close to the treatment centre often attemptedto maintain their day to day life while supporting the patient.Family members who balanced their responsibilities in this wayoften felt caught between competing demands. Parents feltdrawn between the needs of their children and those of theirill spouse.I really don't know how my kids are doing...which ever wayI do it, when I go back or stay here, there's always thisfeeling of yes I should be here, but I should also besomewhere else...that's a problem with the distance.One man experienced competing demands between his work and hissupport role in the form of mixed messages from those whoprofessed to offer him support.71I phoned my counterpart...what he was trying to do was totell me...I'll cover for you, take all the time you need.What he said was, we need you back here big time...we'redesperate without you but...make sure you don't come backuntil you're ready to commit full time because that's howmuch we need you...that really got me thinking...that theamount of leeway that I'm getting here is not good -- atwork.Most family members were able to balance responsibilities for ashort time, but found this increasingly stressful over time.Sometimes family members felt that they benefitted frommaintaining their usual routines since doing so provided themwith another outlet for their energies and distracted them fromthe BMT situation. In addition, those living close to thetreatment centre were more often close to their support networkwhich made adjustment much easier.A different pattern of adjustment was evident among familymembers who had travelled a great distance to be at thetreatment centre. These participants geneth&iy gappoup matyorkmore responsibilities and, in extreme instances, permanentlyforfeited important aspects of their daily life to be with theill person. One participant chose to leave his job whileanother unexpectedly lost hers when she relocated. For thosewho were great distances from their home, making arrangementsto cover their usual responsibilities was a continual source ofstress.That was more devastating...than actually coming out...getting all the financial end of it arranged and findingsomebody to watch your house and winding [down] jobs.Because of their constant contact with the health care teamfamily members often took on responsibility for conveyinginformation to the family and friends, a role which some foundstressful.72When I go home from the hospital at night...I'm tired bythat time and I don't want to have to sit down and, andtalk to too many people...but all these people have tobe... included in...[ill husband's] progress. I find thattakes a lot of time.In spite of these difficulties, family members also recognizedthat they did not have to deal with the daily pressure ofbalancing household responsibilities, but enjoyed a certainsense of freedom.I was living this...artificial kind of life where...I hadvery few responsibilities and I could pretty much do whatI wanted...as it turned out I spent most of my time at thehospital...more than...ever before, my time was my own. Ididn't have the pressure of a family or a household, mywhole life was in the hospital.Eventually, those who spent extended periods of time at thebedside became bored, especially if the patient's recovery wasslow or complicated.There's really nothing to do in [this city]...be aroundthe hospital...there's no other purpose to my staying here...the main thing is really waiting for the time to pass.Thus, living a distance from the treatment centre and living inthe same city as the hospital required different adjustments todaily routines; however, neither arrangement was without itsdifficulties.Most participants temporarily put aside some aspect oftheir daily lives: their job, parenting, domestic duties orleisure activities. How family members' felt about theadjustments to daily life affected how difficult they perceivedthose adjustments to be. One of the downfalls of giving upaspects of daily life was the diminished self-esteem whichaccompanied role loss.73I have very little outside life and whatever I've got hassort of been taken over, now I don't...think I resent hisparents for that...but I certainly resent circumstance....It means that...I'm a bit out on a limb....it's not somuch a loss as an incompleteness in a sense...it's to dowith self image.... Nobody's actually asked me what do youdo because I'd say...I do nothing [feigning crying)...it'snot just the fact of it but the feeling...that I don'tlike.Some family members were almost apologetic for harbouring somefeelings of resentment about their changed lives. Underlyingthis hesitancy was the notion that their lives had not been asdramatically changed as the transplant recipient and thatairing their feelings was therefore, not appropriate.This is how it's affected me most of all because I've hadto...give up, which sounds very bad ...but I've had togive up the things I normally do like my exerciseclass...my quilting group, all the things that, it's nogreat hardship to give up, but it's part of me.Those who were unaccustomed to caring for the ill sometimesexpressed concern about their ability fulfil their new role ofproviding support to the patient. One woman expressed feelingsof inadequacy about providing support because, in herestimation, she could not fulfil her own expectations of what"good" emotional support was.I wish I could sit by his bedside and I wish you couldteach me how to do that.... The way I think that it shouldbe is that I can manage all this quite nicely. But Idon't think I really can. [voice tremulous]When family members gave up previous roles in which theyfunctioned competently in order to take on the less comfortablerole of support provider to the ill, their sense of mastery andself-esteem was often challenged.Practical support also affected the ease with which familymembers adjusted their day to day lives. Participants received74a range of such support including accommodation, the use of acar, child care, and financial aid. One man was particularlyefficient at eliciting and organizing the practical supportavailable to him.It always seems to pull together. There's always somebodyI can call on...to do a little bit...for the mostpart...the daily stuff.This person was the only participant to actively solicitpractical support from his network. Most others found itdifficult to indicate their need for support, but were able torespond to offers of support. Surprisingly, proximity to theirsupport network did not seem to increase the amount ofpractical support that family members received. One familyfrom out-of-town received a sizeable cheque from theircommunity, while two other families had members of theirsupport group travel great distances to provide child care.Despite the distance, the support networks of these familiesrallied.At times, the practical support offered by others wasaccompanied by tension. One woman found it distressing to seethat her household was being run contrary to her wishes, butfound it difficult to criticize her family openly in view ofher own needy position and her limited energy.As time went on certain tensions developed at home betweenthe children and...their grandparents...I felt if I camehome more often I would be put on the spot, have to takesides more, or have to intervene and I was very reluctantto do that...I don't want to be involved in that, it isjust going to add extra aggravation and extra pain on allsides.Another difficulty arose when the support offered was notviewed as helpful by family members.75I get confused because one [friend] says...pray in thechurch. One says we go to Buddhist temple to say a prayer.... I'm not strong enough to say, oh don't go...that'snonsense. They are very serious, sincere. So when theytell me I...kind of pretend that I have the same vision...even though I'm not...[a] strong believer.In relating these incidents, of tension family members oftenbalanced their frustration by recognizing that the intent ofthe help was often genuine. When concern was perceived asgenuine, it was more difficult for family members to declinethe offers.^Of the three families from outside the city thatrelied on social services to assist them with transportationand accommodation, only one family required practical helpbeyond that. The interviewed family member of that familyexpressed surprise that the hospital system provided that kindof assistance. Family members in this study tended to rely onpractical support from within their own network and turned toprofessional sources of help as a last resort.Adjusting Relationships Separation and connection represented the two patterns ofdisruption that occurred in family members' relationships.Various factors within the BMT experience contributed to thesechanges and at times, participants employed specific strategiesto separate or connect with others. Assuming a support role inrelation to the transplant recipient was a major shift whichoccurred in all participants' relationships.Separation within Relationships Family members easily identified that less frequent callsby friends and being separated from their family by distancewere factors which left them feeling isolated during the BMTperiod. Less obvious factors also contributed to feelings of76separation. For example, individual responses to the BMTtreatment served to isolate some families. Some participantsadmitted that, just as it was difficult to truly understandwhat the ill person was experiencing, it was also difficult tocommunicate their own experience to others.There's really something in this whole procedure that's sodifferent for the patient that...if it's not you can'treally share.In addition, the shift in attention towards the ill personsometimes detracted from relationships among well familymembers.We were being too hard on ourselves and we weren'tthinking of ourselves... we were just thinking of [illson] and... giving all my attention to [ill son] and...notgiving any attention to each other.Vastly different approaches to dealing with the transplant alsofuelled feelings of separateness among family members.I don't think...there'll be any support from [illhusband]'s family because I think they're very much, theyare just not going to be afraid because we know it's justgoing to be alright.... It's probably...a very differentway of coping from mine and so if anything, it annoys merather than... supports me.Similarly, disparate attitudes displayed by members of thehealth care team detracted from the relationship between familymembers and professionals. When these factors converged, itleft family members feeling as if, on some level, they facedthe crisis alone.At times family members took deliberate action to distancethemselves from individuals they perceived to be negative,unable to cope, or indifferent towards the transplantrecipient. One participant described how he avoided77individuals who seemed unwilling or unprepared to deal withtheir own emotions, sensing that it would make it moredifficult to deal with his own emotions. Another participantspoke of her intention to sever ties with friends that were notable to accept the uncertainty of her son's condition.There's a lot of friends that...we probably won't have asfriends really close because they're not ready to acceptthe fact that...something could happen to [ill son] at anytime .... I think it's going to be more on our own by notinitiating the friendship back when we go back there.Concern about escalating the negative emotions of othersprompted some family members to avoid communicating and thus,connecting with others in a meaningful way. Two participantsreferred to this as "burdening"; a phrase which implied thatthe recipient of their feelings would somehow be encumbered bythem.I probably keep too much of it to myself because I knowhow my mother worries so...I don't very often say to her,oh this is really awful and...the oldest of our childrenis 27 and I still feel it's a little bit unfair to burdenhim.One man described how he selectively informed people whoinquired about his wife's condition based on his assessment ofthe genuineness of their concern. By doing so he hoped toavoid involvement with people who were making only politeinquiries about his wife.Many friends or relatives call. I have...at least five orten phone calls every day.... To certain people I say oh,she's okay. But to her very close friends I really tellthe truth. Honest, saying [sic.] what is going on.One participant described this process of adjustingrelationships as "sorting out who your friends are" and feltthat this would continue when the family moved back among theirsupport network.78Connection within Relationships In certain relationships family members reported feelingmore connected. For example, participants continued tomaintain connection in relationships that had previously beenclose.We're unique in the fact that we are very close....we'restill close...I don't think this has brought us anycloser, I don't think we could be any closer.... Thiscancer thing has just kept us as close as ever.Two family members observed that relationships in the wholefamily were strengthened when the ill person adopted a moreopen communication style during the transplant.Before he [ill brother] never expressed any emotions...itwas really hard to communicate with him...on astraightforward basis, so this was great...I felt reallygood that he was letting us know what he wanted, what hewanted us to do, and what he was going to do...it wasreally, really nice.For others, the concentrated time spent together during thetransplant enhanced their relationship with the ill person.We've gotten closer together...he just spoke up at thesupport group last night...saying that I have had a hardtime coping with it but...my mom stood behind me, whichhe's never ever told me...never directly but he told agroup of people last night.Proximity generally fostered connection in relationships;however, it was not necessary. When family members perceivedlong distance offers of help and indications of concern asgenuine, they felt connected to their support network.In our hometown it's fairly small...a lot of people knowwho [ill brother] is but they don't know him,....Everybody's always asking how he's doing...how he is...wishing him well...and our relatives, cousins, aunts,uncles, are just great.... So yeah, I'm getting a lot ofsupport from a lot of people.79Certain behaviours of the staff fostered feelings ofconnection. Taking time to communicate with family members anddoing so in an open and honest manner were often mentioned asbehaviours which fostered connection between the family andstaff. Participants seemed acutely sensitized to actions whichreflected caring. Family members felt close to thoseprofessionals that demonstrated genuine regard for, andinterest in, each family member.The fact that...a limited number of nurses keep comingback so they get to know the patient as a character and asa patient....the fact that the nurses and the doctors knowyou and remember you and it seems...that while they'vebeen off...you were still part of their life...the wholething's created quite a personal relationship...also aprofessional relationship but...it is a very personal way...of caring.Actions which fostered trust, particularly between the medicalstaff and the family, were highly valued by family members.If you have a doctor who...is perfectly frank...and open...despite the fact that there is a disease that takesaway a lot of your options, it involves you in the choiceof treatment and...creates the kind of trust that youwouldn't be able to get any other way...if you constantlyhave to be worried whether they're hiding something fromyou, then it becomes very difficult to trust people.In recounting examples of the care directed to the recipient,family members noticed and appreciated demonstrations ofconcern for the patient's welfare that seemed to go beyond theordinary expectations they had of staff. One woman recountedhow she was touched by a physician's efforts to control the illperson's nausea.The doctor even said, maybe [she] won't get sick if wetake the lid off of the food...that's humanity...They evenput a sign on her door to remove the lid...they reallytried, they cared. She wasn't a number on a productionline. She was a person that mattered...those littlethings are the ones that make you feel like you matter.80The participants tended to establish greater connection tothose family members, select friends, and health careprofessionals who became involved in the transplant experience.Certain features of the interactions with these individualspromoted connection: honest and direct communication, regardfor the family member's uniqueness, and genuine concern.The participants employed deliberate strategies to developrelationships that they regarded as helpful or directed towardsa positive treatment outcome. Some participants, who believedthat their relationship with professionals might influence thecare provided to the ill person, engaged in activities topromote connection with staff members. One of thoseparticipants capitalized on her knowledge of the physician'shometown to develop a sense of connection while another triedto avoid making requests of the nurses that might annoy them.In an attempt to develop a tacit agreement with nurses, onewoman took on some of the nursing care.I always did a lot in the hospital, I guess the reason Idid was to help the nurses, to relieve them of some of themore mundane tasks...then if something urgent happened...Iwould not be uncomfortable with demanding that somethingbe done about it. I guess I expected them to figure outthat I wouldn't ask if I could handle it myself.Among all the comments about health care professionals, onlyone depicted a momentary faltering of the trust in the healthcare team. This was precipitated when the family memberidentified an error made by a staff member which worsened thepatient's symptoms. Although the family member felt justifiedin demanding the staff take action to rectify the problem, hewas concerned about the effect of his behaviour on his81relationship with the health care team. In spite of thisincident, all participants indicated that they developed someconnection with the health care professionals. Indeed, thelarge number of unsolicited comments about hospital staffduring the interviews indicated that the participants viewedthese relationships as very important.Fostering Connection: Assuming a Support Role Family members did not deliberately undertake the supportrole to foster connection; however most participants indicatedthat "being there" and "doing for" the patient had that effect.Various motives for supporting the ill person were expressed byparticipants. One of the most frequently cited reasons was thebelief that simply "being there" comforted the ill person.He never said it at the time but...afterwards talking toanother person...he alluded to that, even though you'renot able to physically do anything...it's importantknowing you're there, you're not alone, that's a reallybig thing.Some felt that their support promoted the transplantrecipient's healing process while others were motivated to bethere to ensure that the patient received quality care. Onewoman felt that she was better able to provide individualizedcare to her husband while another woman, sceptical about thecare, expected to compensate for the hospital care. Anotherparticipant regarded herself as a natural caregiver and, as aresult, offered her support almost instinctively. Beliefsabout dealing with crisis inspired some family members tobecome involved. In some families coming to the aid of an illfamily member facing a life-threatening procedure was anexpected behaviour.82My job is to put up with it, to deal with it, help otherpeople to deal with it. I mean if that's what I gotta do,that's what I have to do. If I don't then...what good amI doing.... So it's not really a burden...it's part of thepackage. Somebody's got to do it and it happens to be me.Two spouses automatically claimed the position of "primarysupport person" by virtue of their familial relationship withthe transplant recipient. Family members also chose to becomeinvolved because they felt that they were the best ones toprovide support, given the circumstances of other members ofthe support network.Part of the reason that I'm out here...is as much for thefamily, her children and her husband as for her...becauseI know that it's a horrific financial burden...so inaddition to what I'm doing for [my sister], I'm relieving[her husband]...He can work to do the job he has to do tomake the money to do what has to be done.Aside from their concern for the patient, most participantsalso admitted that being at the hospital made them feel better.There's more than one reason for my being here, my realreason is I feel better when I see her...that's my greedyreason...I have to see that she's being taken care of.Taking on a support role meant that family membersprovided comfort, diversion, physical care, emotional support,encouragement to comply with the treatment, and assistance withdecision making to the transplant recipient. All participantsfelt that comforting and providing diversion were central totheir support role.I just basically spend time with him as much as I can. Ido little things for him...when he was really sick withhis chemo I just try...to comfort him, you do whatever youcan ...you get water, you put cold cloths on his head,whatever, just to make him more comfortable...try and findsomething for him to do, keep up some conversation, justtry to keep the boredom away.83Varying degrees of physical care were provided to thetransplant recipient by family members. Some found itstressful to provide such care while others felt thatprofessionals provided more competent care and preferred thatthey do so. A few family members became very involved inproviding physical care.I'm doing...very personal things, measuring his urine andwiping his bottom from diarrhea and those are the sorts ofthings that he would find very upsetting for me to do andyet he's too sick...for me not to do it.All family members believed emotional support was an importantaspect of providing support to the patient and many differentapproaches to providing that support emerged. Some regardedtheir presence at the bedside as emotionally supportive whileothers assisted the ill person to regulate hope and fear inmuch the same way that they balanced their own emotions: byencouraging positive thoughts, generating hope and encouragingthe expression of negative feelings.There's some days where I don't support him, some days...Ikick him in the ass...for being stubborn and... negativein any way.... If he's laying back and...not givingeverything that he should be...I'm gonna tell him to getthe hell up and get going.[I) let her drain out...all her bad feelings...and afterit's out...I'm not sure what you look for when it's timeto start kind of building it back up again but...you cansee that she's...ready for it...I guess you test it out alittle bit....give it a try...maybe give a little...instance of something that happened...the fact that theplatelets went way up...these guys really know whatthey're doing.For one family member, being supportive included maintaining anactive role in decision making and advocating for the patient.84You have to be aggressive, you have to stand up foryourself...I feel very sorry for people who are away fromhome who are timid...who just come in and are sort oftaken over by the system...they don't understand that you...can say...I don't like the way this is going or Ireally need to know...people have to take charge of theirown case to a certain extent and I feel sorry for thepeople who don't understand that or to fight to do that.The extent to which control was maintained or relinquishedvaried considerably among the participants. Most familymembers claimed that they gave control to the health careprofessionals readily, believing that this was inevitable, andin some cases, more desirable.You don't have a lot of control over it in the first placeand that's just something you have to deal with...personally the feeling of not being in control...wasn'treally a big point with me...as far as control there's awhole lot of things we can't control especially whenyou're sick or part of your family is sick.In this scenario I don't want to be in control. I want tohand control over to somebody who knows what to do aboutit.Those family members who relinquished control to the healthcare team often supported the patient by encouraging compliancewith the prescribed treatment. In the one marital dyad wheremaintaining control was important, the supportive functionbecame one of questioning the professionals, making requests tomake the treatment regime 'fit' with the patient's individualneeds, and in some instances, explaining to professionals theeffect of the treatment on the recipient. Although the styleof providing support was unique among the family members, theintent of their supportive measures were generally the same.In sum, relationships with others shifted during the BMTperiod. Family members were influenced by the behaviour of85others; they were repelled by those who undermined theirefforts to cope and drawn to those who demonstrated genuineconcern. Accordingly, participants distanced themselves frompeople who thwarted their efforts to deal with the transplantand connected with people directed towards a positivetransplant outcome. For all participants, this meant thattheir relationships with the patient and profesionals becamecloser as attention shifted towards the transplant recipient.Adjusting OutlookDisruptions to life outlook were evident in familymembers' views about the future, their relationships with time,and their priorities. In this study, participants' adjustmentsto life outlook were generally less obvious than those made intheir daily life and within their relationships. One familymember commented that the changes in her life outlook were notlikely to be fully apparent while she was focused on theimmediate crisis of the transplant.Getting used to the [cancer] diagnosis...takes quite along time and with...a crisis coming up you postpone thatbecause you have things to deal with immediately... Ithink the...diagnosis is something that...alters the widerpicture of your life that you can't be involved in that ifyou have something immediate...to deal with.The most evident disruption in life outlook was manifestedin family members' views of the future. When all possibletreatment outcomes were considered, family members' beliefsabout the future were dampened.The way we look at the future and the way that we makeplans is going to be so affected...you end up thinkingwell other people don't really look at their life likethis...we're the ones that this terrible tragedy hashappened to. I'm not sure it's going to be...violentlydepressing but...it's quite...saddening.86Parents found that disrupted views about their childrens'futures caused them considerable anguish.I felt kind of bad that...he never had the opportunityto...go to the sperm bank.We did have the will changed. [He] may not be able towork to support himself long term, so we had to make somearrangements there [paraphrased from field notes].As hopes, dreams, and expectations were shattered, familymembers felt compelled to abandon their previous visions of thefuture.Most family members adjusted their future outlook byrefocusing. When circumstances became more uncertain, futureexpectations were narrowed and, as the patient began torecover, family members widened their view of the future.If you encounter a crisis then the wider pictureimmediately has to disappear and you go back to y'knowjust getting through bit by bit and not necessarily day byday but maybe even hour by hour...or long minute by longminute, and then the more philosophical side about how islife affected is...not even a luxury you can afford atthat stage.The most common strategy family members used to narrow theirview of the future was to adopt a "one day at a time" approach.There are all the cliches like one day at a time and yetthat's very true. Sometimes you think I can't cope withthis and then you just say well, let me just get through'til noon and all of a sudden it's noon and you think wellI made it so then you think okay, maybe I can deal withthis until five o'clock tonight and then you do.Two family members narrowed their focus by ignoring certainproblems and focusing on the most pressing issues.Problems don't really go away if you just push them asidebut in a sense there's only so much that I can or that I'mprepared to face. And in that sense it's maybe not somuch one day at a time as one problem at a time.87One family member tried to maintain his view of the future byfocusing on previously planned events; however, when herecalled these events he became very emotional. Those familymembers who adjusted their view of the future seemed to copewith their emotions better than those who tried to retain theirprevious future orientations.Another aspect of life outlook that was disrupted wasfamily members' sense of time.When things aren't going well...ten minutes can be a greatmany seconds. I do find that since I've been here in[city] for this procedure that...the days go quickly butthe minutes go incredibly slowly I find...the next fewweeks...are just going to be very much a question ofgetting through and passing the time because there is verylittle I can do.As the routines in their lives radically changed, the way thatfamily members normally marked and quantified time was nolonger relevant. Two family members linked their difficultieswith memory and concentration to their distorted sense of time.We've been here five months and it doesn't seem like itand then you start thinking about all the obstacles you'vegone over and all the things you've gone through and thenyou start to realize...we have been here a long time, andthen again it doesn't seem that way. It's really reallyhard to understand and I found it quite interesting thatyour memory and time perception was actually distorted.Without the usual markers of time, family members found itdifficult to adjust their memories in time sequence.Time is completely disrupted and I still find that...Ican't remember when what happened... Yesterday seems faraway whereas last week seems very vivid...and [illhusband] finds that...not what we remember but how weremember...[has] been greatly affected by this.... It'salmost a kind of senility...certain things just seemcompletely gone... I can remember, it's just that somehow...the memories aren't...readily there...not cataloguedproperly.88In addition, family members had to adjust the meaning theytraditionally attached to time. Most participants began toplace greater value on the quality of the time they spent withothers. Others focused less on "doing" and more on "being".I learned that I have to make use of the valuable timethat we have...as the doctor said it's quality time notquantity time. And make the best of what time that youhave got...even now they just say go out and enjoy it,have a good time, enjoy your pass, when you're going outon a day pass...and we do now. Like we make the fullestof the time.As the participants spent more time in hospital, theydescribed how a third aspect of their life outlook wasbeginning to shift. Family members had a sense that theirpriorities had been disrupted, but often found it difficult tospecify how they had adjusted those priorities.Priorities have been changed...things you never thoughtyou'd need, you all of a sudden need and things you alwaysthought were important all of a sudden don't matteranymore.Most participants were just beginning to clarify their newpriorities during the BMT period. Of the three family memberswho were able to describe their new priorities, two stated thatthey valued family relationships and time spent with theirfamilies more.I think it [the transplant experience]...gives yourrelationship with your family a little higher value.I'm forced to pay more attention to the family justbecause of our circumstance.... When I use the wordforced, I mean circumstances have forced us to change ourperspective of things, and as a family unit if you'reresponsible I figure that things change as needs be.... Ithink I've just come to realize it. That's the only way wecan survive.One participant, interviewed just after his wife was dischargedfrom hospital, described his changing priorities in terms of a89shift in his focus of concern. He became less concerned withhimself and more concerned about others who were going throughthe BMT experience.This kind of experience opens up all sorts of ways oflooking at life and what the opportunities are...and iteven got me to thinking...that I could contribute in alarge way to helping things in terms of leukemia.... Maybewe really should refocus and try to work for somethinglike that... there's the whole human element that comesback to it and how you could contribute to helping otherpeople. That really changed my perspective on my work.Thus, the sudden interruption of the BMT event, combinedwith the uncertainty that it brought to the lives of familymembers, disrupted the way participants regarded the future,their priorities, and time. The adjustments that familymembers made in their life outlook during the transplant periodwere most evident in the way they viewed the future and time.Over time, they were more apt to describe how priorities hadalso changed.The BMT experience disrupted many aspects of familymembers lives. When treatment began, the day to day lives ofthe participants changed drastically. To begin with, familymembers gave up certain responsibilities to be able to providesupport to the ill person. At the same time, family membersnoticed that their relationships with others changed; theybecame closer to the ill person, health care workers and somefamily and friends and more detached from people who were notgenuinely concerned about the crisis they faced. In addition,family members began to alter their view of the future and timeand to restructure their priorities. The challenge ofdisruption was adjusting to these changes simultaneously.90SummaryThis chapter described the experience of BMT from theperspective of family members of transplant recipients. Theaccounts revealed that BMT had various meanings for familymembers and that those meanings influenced how family membersappraised and responded to the challenges associated with BMT.To family members in this study, BMT was viewed as a life-threatening and a life-saving procedure, a radical treatment, apioneering venture, a period of unpredictable recovery, and asudden and unexpected interruption in their lives. From thesemultiple meanings emerged an understanding of how uncertaintybecomes a major focus and how BMT became a force whichdisrupted the lives of family members.Family members' efforts to cope with the transplant werecentred around managing their emotions and adjusting to thedisruptions. The central emotional reaction, and the source ofmuch of the felt distress, was the fear that the transplantrecipient would not survive. Since family members felt therewas little they could do to influence the outcome, theyaccepted uncertainty as an intrinsic part of the experience andfocused on dealing with their reactions to uncertainty, aprocess which involved balancing their fear with hope. Bymaintaining this balance, participants were able to live withthe uncertainty of BMT. The disruptions arising from BMT alsorequired that family members make various adjustments in theirlives. Those adjustments included giving up and taking oncertain daily responsibilities, developing interpersonalconnections with those dedicated to a positive transplant91outcome and separating from those who undermined their coping,restricting views of the future, redefining time and shiftingpriorities. In sum, the participants' accounts of the BMTexperience revealed that family members were engaged in theprocesses of balancing emotions and adjusting to disruptionswhen an ill member of the family underwent BMT.92CHAPTER 5: DISCUSSION OF THE FINDINGSIn this chapter, the findings are discussed in relation tothe findings and theories of other researchers. The discussionwill illustrate how obtaining the perspective of family membersduring BMT enhances what is already known about familiesdealing with illness and with BMT in particular. Thediscussion is presented according to the three concepts whichemerged from the data: multiple meanings of BMT, uncertainty,and disruption.Multiple Meanings of Bone Marrow Transplantation Descriptions of BMT in the literature, written from theperspective of professionals or researchers, depict BMT as astressful, intense, anxiety provoking, isolating and uncertaintime for family members (Brown & Kelly, 1976; Patenaude,Levinger & Baker, 1986; Patenaude, Szymanski & Rappeport,1979). Such descriptions establish the profound impact of BMTon families; however, they do not fully capture the meaning ofBMT to those who are living the experience. The fivedescriptive motifs representing the multiple meanings of BMT inthis study add to nursing knowledge by: 1) corroborating theserious impact of BMT on family members, 2) identifying sharedaspects of meaning among family members, 3) illuminatingvariations within those shared meanings, and 4) providinginsight into how family members construct meaning in relationto BMT.One unexpected meaning that emerged from the data was theview of BMT as a radical treatment. Previously, BMT wasconsidered an experimental treatment, but is now regarded as a93standard medical treatment for certain cancer illnesses(Freedman, 1988; Phillips, 1990). Health care professionals,who have witnessed the gradual introduction of BMT intomainstream medical practice, are less likely to regard BMT as aradical treatment than are family members, who are unfamiliarwith medical technology and sensitive to the effects of suchtechnology on their loved ones. Therefore, it is notsurprising that family members appraise BMT as a radicaltreatment. By obtaining the perspective of family members,alternate meanings, which otherwise go undetected byprofessionals who observe family members, become explicit.The descriptive motifs illustrate the complexity of themeanings that family members construct in relation to BMT. Theliterature has established that cancer often promptsreflections about life and death among those diagnosed andtheir family members (O'Connor et al., 1990). The findings ofthis study demonstrate how treatment complicates life and deathissues by adding a life-saving dimension to the cancerexperience and additional elements of risk: death fromcomplications or treatment failure. As a result, the dual viewof BMT constructed by the participants was present in theirfluctuating levels of hope and fear. That variation isunlikely to be captured by quantitative research methods whichfocus on the mood state of family members at a single point intime. This may account for the inconsistencies that arereported in the literature with regard to family members needfor hope (Gould & Toghill, 1981; Leske, 1986; Molter, 1979;Price, Forrester, Murphy & Monaghan, 1991; Tringali, 1986).94The multiple meanings that family members constructedaround BMT differ from those of professionals but may be basedon the same observations. Most professionals would agree thatcurrent BMT protocols are being refined, that treatment in thefuture may be very different, and that relatively few hospitalsperform BMT. This information is likely to be regarded byprofessionals as the basis for greater public awareness of BMT,further medical research to enhance the efficacy andavailability of BMT, and continued funding of programs. Adifferent response was elicited from family members intimatelyinvolved in BMT. Some viewed the pioneering status of BMT as alimit to medical technology and others regarded it as areflection of medical technology's potential. The meaning ofBMT to lay people and professionals is embedded in theirbeliefs about medicine, technology, and the health care system.Nurses must, therefore, be aware of the how their ownparticipation in the health care system affects their view ofthe system and how their views may differ from lay people whoenter that system.The value of examining the meaning of illness from theperspective of the individual has been expressed by variousauthors. Gaining meaning through phenomenological approachesto research is necessary to fully understand how the individualresponds to illness and suffering (Benner, 1985; O'Connor etal., 1990). Kleinman (1978) theorized that individuals andfamilies construct explanatory models for particular 'sicknessepisodes' which consist of the way that the individual (orfamily) perceives, labels, explains, valuates and responds to95disease and that, by understanding the explanatory models ofclients, health care professionals could communicate withclients and plan suitable interventions more effectively. Inaddition, an understanding the client's perspective duringillness establishes the basis for a caring relationships withclients (Marck, 1990). Thus, understanding the meaning of BMTamong family members fosters the nurse's understanding of theclient, places the client's responses to illness in context,enhances communication, enables a therapeutic relationship todevelop, and provides a basis for planning effective nursinginterventions.The Challenges: Uncertainty and DisruptionUncertainty and disruption are themes which recur indepictions of various illness experiences. Uncertainty hasbeen linked to the experiences of family members dealing withheart surgery (Mishel & Murdaugh, 1987; Redeker, 1992),patients and families faced with cancer (Chekryn, 1984;Christman, 1990; Hilton, 1988; Mishel, Hostetter, King, &Graham, 1984), caregivers of persons with AIDS (Brown & Powell-Cope, 1991), patients awaiting kidney transplant (Weems &Patterson, 1989), and parents coping with their child's chronicillness (Cohen, 1989). Previously reviewed literatureidentified role adjustment as a significant and sometimestroubling consequence of cancer illness on the family (Lewis,1986; Northouse, 1984). In a phenomenologic description offamilies affected by hospitalization of an adult member inintensive care, Titler, Cohen and Craft (1991) reported thatfamily members experience disruption in normal home routines,96changes in relationships, role conflict as well as uncertaintyand intense emotions. Family members of patients undergoingcardiac surgery also identified the disruption of familyroutines as a significant stressor (Artinian, 1989). The waythat uncertainty and disruption are experienced may vary withinthese illness-related experiences over time and amongindividuals.This study establishes uncertainty and disruption asprominent issues for family members during the hospitalizationphase of BMT. In an anecdotal description of BMT, Patenaude,Szymanski and Rappeport (1979) suggested that the profoundemotional strain experienced by family members emanates fromthe intensity and uncertainty of BMT. Adolescent bone marrowdonors reported that they "experienced things becomingdifferent" and indicated that the transplant experience was "abig deal emotionally" (Van der Wal, 1988). In that study,emotional difficulties were linked to the "encounter withdeath" and to the need to adapt to sudden changes in everydaylife, relationships with parents, and life philosophy. Thisstudy's findings parallel previous anecdotal and qualitativereports of the BMT experience adding support for thesignificance of uncertainty and disruption as central conceptsduring family members' experiences during BMT.UncertaintyIn this study, uncertainty was conceptualized as acondition arising from the participants' perceptions of thecircumstances surrounding BMT. Other authors concur with thatproposition. Mishel (1988) proposed that an appraisal of97uncertainty results when an individual is unable to determinethe meaning of illness-related events, that is, when the stateof the illness is ambiguous, care and treatment is complex, andthe illness outcome is unpredictable. Similarly, Hilton (1988)stated that the uncertainty experienced by women with breastcancer arose from their perceptions that circumstances were notcertain and events were not clear, definite, or pre-determined.When uncertainty is understood as a phenomenon determined bythe individual's perception of events, then variations in theway family members view uncertainty are expected. Indeed, twoparticipants in this study identified uncertainty as the mostdifficult aspect of the BMT experience, whereas others found itless troublesome than the disruptions in their lives.A comparison of this study's findings with other researchreports reveals that the focus of uncertainty varies accordingto the type of illness event. During BMT, uncertaintyconverges around the treatment outcome. In contrast,uncertainty experienced by women dealing with breast canceremanated from the inability to predict the future, unsafefeelings, doubt, indecision, being unable to rely on others,and from feelings of vagueness (Hilton, 1988). Although it islikely that families facing BMT are also dealing with theuncertainties of cancer, it appears that entering an intensetreatment phase, such as BMT, may intensify uncertainty byfocusing and concentrating concerns on the life and deathpotential of the treatment.Mishel's (1988) Theory of Uncertainty in Illnessidentifies three antecedents which influence the appraisal of98uncertainty, two of which are useful in understanding howuncertainty is constructed by family members during BMT. The"stimuli frame" consists of the symptom pattern, eventfamiliarity and the congruence between expectations about theillness or treatment and reality. Descriptions of BMT as aperiod of unpredictable recovery and as a pioneering venturesuggest an ill-defined stimuli frame. The second factor,"structure providers", includes available social support andthe presence of a credible authority (Mishel). In this study,family members received few opportunities to discuss theirexperience; more often they received offers of practicalsupport. According to Mishel's theory, limited social supportcontributes to uncertainty by depriving family members ofopportunities to make sense of the events surrounding BMTthrough discussion with others. On the other hand, thepractical support they received would tend to decreaseuncertainty by stabilizing the family's environment. Familymembers' faith in health care providers would also tend todiminish uncertainty. In summary, the findings of this studyare congruent with many of the propositions suggested in the`Theory of Uncertainty in Illness' (Mishel 1988). This theorymay be a useful tool for helping nurses understand how familymembers appraise uncertainty in illness.Accepting UncertaintyIn this study, accepting uncertainty meant that familymembers recognized their inability to alter conditions and,consequently, acknowledged uncertainty as an inherent part ofthe BMT experience. In the latest revision of the Theory of99Uncertainty, Mishel (1990) proposed that the individualresponds to continued or intense uncertainty by regarding it asa natural occurrence in life instead of considering it anunwanted deviation from predictability. Such "probabilisticthinking" enables the individual to consider the variousfactors affecting the illness, contemplate multiplepossibilities and actions, re-evaluate priorities, and,eventually, to develop a new orientation to life. The processof accepting uncertainty described in this study parallels theshift toward probabilistic thinking described by Mishel andprovides some empirical support for Mishel's propositions.Further research to substantiate and expand this process ofaccepting uncertainty is needed to fully understand how itaffects coping responses and personnal growth.Participants identified that "balanced" informationprovided by health care professionals was central in helpingthem accept uncertainty. Mishel (1990) claimed that whenhealth care providers and the family's support network possessa probabilistic orientation, they encourage the person dealingwith uncertainty to adopt such a view. Furthermore, byacknowledging that certain answers do not exist, trust andmutual support are fostered within those support relationships.These observations are supported in this study. Professionalsmay need to reconsider the assumption that uncertainty preventseffective coping. If uncertainty is inevitable and, therefore,best "accepted," then nurses' approaches to information sharingwhich promote probabilistic thinking are likely to be mosteffective.100This study concluded that family members "acceptuncertainty" at different rates and suggested that those whomanifest significant emotional distress may be in the processof coming to terms with uncertainty. Patenaude, Levinger andBaker (1986) described how family members, initially angered byfrank discussion of BMT risks, eventually began to appreciatethat honesty. Similar responses were found in supporters ofpersons with AIDS who demonstrated frustration when they didnot get definitive answers from health care professionalsinitially, but who learned to accept uncertainty over time(Brown & Powell-Cope, 1991). Mishel, Padilla, Grant andSorenson (1991) concluded that patients who focused on enduringcancer treatment delayed appraisal of uncertainty and,therefore, did not institute coping strategies to deal withuncertainty. Awareness of the process of "acceptinguncertainty" may help nurses make sense of the reactions to BMTthat they observe in patients and family members alike.There is growing support in the literature for the ideathat uncertainty fulfils an important function in the illnessexperience. Cohen (1989) reported that families coping withchronic illness at times preferred uncertainty and, as aresult, engaged in measures to maintain, create, or reduceuncertainty. Among patients anticipating the results ofradiotherapy, uncertainty was viewed as a circumstance whichallowed hopefulness to emerge (Christman, 1990). Other authorshave theorized that transitions into major life events arecharacterized by uncertainty (Mishel, 1990; Parkes, 1971).This study's findings suggest that uncertainty allowed family101members to maintain hope at a time of great risk and thataccepting uncertainty allowed family members to deal with theiremotions. Such a view contrasts with the traditional one ofuncertainty as a stressor which is founded on the belief thatunderstanding, predicting, and controlling events is desirable(Brown & Powell-Cope, 1991; Mishel 1990). When uncertainty isregarded as purposeful, as opposed to a barrier to be overcome,nursing interventions shift from those designed to diminishuncertainty towards those which support it.Emotional Responses Fear emerged as a powerful emotion among family membersduring the transplant period and formed the basis for much oftheir emotional distress. Researchers found that familymembers demonstrated more emotional distress during activecancer treatment, when uncertainty, fear, and treatment effectswere more evident, than during follow-up care, and that thehighest distress levels were experienced during the palliativephase (Cassileth et al., 1985). Bone marrow transplantationhas been identified as a particularly stressful cancertreatment because of its intensity, significant risks, and themultiple symptoms and complications which may arise (Lesko &Holland, 1988; Patenaude, Levinger, & Baker, 1986).Adolescent bone marrow donors reported that BMT prompted an"encounter with death" which made coping with the treatmentmore emotionally taxing than living with chronicity (Van derWal, 1988). Transplant survivors retrospectively described theBMT experience as "extremely stressful both physically andemotionally" and attributed that stress to unexpected102complications, fear, and loneliness (Belec, 1992). This studyconfirms that BMT treatment heightens the stress associatedwith cancer and intensifies feelings of fear among familymembers.The findings of this study indicated that family members'emotional responses emanated primarily from the uncertaintysurrounding the treatment outcome. Some family members wereable to acknowledge that their fear was rooted in thepossibility that the recipient might die. Fear and anxiety arepart of the same psycho-biologic response to threat, but aredifferentiated by the level of awareness of the threat (Burke,1982). Fear occurs when the individual is able to recognizethe source of the threat, whereas anxiety results from a vaguesense of danger. Nurses may best help family members whomanifest high levels of anxiety, first by assisting them toclarify aspects of BMT that are threatening, and second byhelping them acknowledge their fear.Despite the expected emotional turmoil elicited by thetransplant experience, family members were reserved aboutexpressing and focusing on their emotions and rarely soughthelp to deal with them. Various explanations for thisbehaviour were identified in the reviewed literature, namelythat family members: 1) cope by putting their emotions on hold,2) focus on providing care to the ill person as a way ofdealing with their own emotional needs, 3) presume that theirneeds do not justify intervention, 4) perceive that hospitalstaff are too busy to attend to their emotional needs, or 5)are unaware that professional support is available (Hinds,1031985; Hull, 1989; Lewandowski & Jones, 1988; Welch, 1981;Wright & Dyck, 1984). The accounts corroborated, expanded, andin some cases refuted, these explanations.In the stress and coping literature, uncertainty isidentified as a stressor that arises when efforts to organizeexpekiences into understandable and predictable terms areundermined (Lazarus & Folkman, 1984). One way that individualscope with negative feelings arising from those frustrateddesires is to employ "cognitive avoidance" strategies (Snyder &Ford, 1987). Such strategies include diversion, selectiveattention, and selective memory. Hinds and Martin (1988)reported that adolescent cancer patients responded todisturbing thoughts about their illness by using a variety ofcognitive and behavioural strategies which they labelled"distraction". Similar tactics were used by family members inthis study and were clearly regarded by the participants aseffective in helping them achieve and maintain a balancedemotional state. Putting emotions "on hold" may, indeed, be acoping mechanism which reduces family members' stress; however,it is not clear whether this is a short term mechanism to copewith the intense emotions associated with the transplant periodor whether this tendency persists over time. Theseobservations raise questions about the timing and effectivenessof nursing interventions designed to encourage ventilation offeelings.The data supported the observation that family membersshift their attention toward the patient during treatment, butdid not support the assumption that they took on a support role104as a way of managing their emotions. Participants' motives forsupporting the patient were primarily altruistic, although theyadmitted that providing support did improve their own well-being. References to the phenomenon of "immersion" have beenmade when describing family involvement in illness treatment inthe literature. Mishel and Murdaugh (1987) described immersionas a series of behaviours that family members of hearttransplant patients engaged in prior to the surgery. In thisstudy, "immersion" included "freeing the self" from usualduties, bonding with the ill person in a way that benefittedthe transplant recipient but deprived the family member, andtaking on the responsibilities of the ill person. Wilson andMorse (1991) described how husbands of women undergoingchemotherapy became "immersed" in their wives' treatment as away of compensating for their fear. They regarded thisbehaviour as part of a natural process of "engaging in thefight" against cancer. Lovejoy's (1986) description impliedthat "immersion" became detrimental for family members whentheir involvement turned into a preoccupation with the illperson which led to exhaustion. It appears that focusing onthe ill person may be a natural, altruistic response to illnessin the family. It is not clear when involvement with therecipient becomes unhealthy for the attending family member andwhich family members may be at risk of establishing such arelationship. Further research is needed to differentiatehealthy involvement in the patient's care from excessiveinvolvement and to identify supportive nursing measures forthose at risk.105The data do not support the suggestion that family membersview interventions directed toward their emotional needs asunnecessary. Some participants indicated that opportunities toventilate their feelings would have been helpful, particularlyduring the "bad days" when their emotional distressintensified. The data also indicated that family memberssuppressed their emotions in certain contexts: in the presenceof the ill person, when others did not demonstrate receptivityto their feelings, and when they judged that sharing theiremotions would burden others who were not coping well. Otherauthors have noted that relatives and friends often censurefamily members' feelings because they believe that verbalizingthem is detrimental to the patient, or because such expressionescalates their own feelings of vulnerability and fear(Wellisch, Mosher, & Van Scoy, 1978; Wortman & Conway, 1985).Receptivity, openness, and trust appear to be essentialprerequisites within interpersonal relationships that enablefamily members to confide in others. Furthermore, it appearsthat some family members may benefit from professional supportwhen emotional tensions are heightened or when their ownsupport networks are unavailable or ineffective.No direct evidence was found that supports the contentionthat family members believe that staff were not interested intheir emotional needs or were too busy to attend to them. Tothe contrary, family members described their relationships withhealth care professionals as positive and specifically notedthat they took time to communicate with them. Instead,participants cited the absence of key family members, distance106from home, or changed interpersonal relationships as reasonsfor their felt lack of emotional support. This supports theliterature which claims that individuals generally regardfamily and friends as their first line of support (Hinds, 1985;Schulz & Rau, 1985). Therefore, professional support isunlikely to be a replacement for the natural support systemsof family members, but should be seen as an adjunct to existingsupports.Although participants reported using the practical supportprovided by hospital social workers, they rarely mentionedprofessionals as a source of emotional support for them.Woods, Yates and Primomo (1990) noted that family members aremost likely to seek emotional support from those with whom theyhave strong ties. The participants of this study may have beeninterviewed before close bonds had developed with the staff.Given the literature cited in the above paragraph, perhapsfamily members were reluctant to ask professionals foremotional assistance but instead preferred to consult their ownsupport network. The other possibility is that family membersmay have been "balancing" their emotions satisfactorily most ofthe time and that, when they did feel a need for support, thestaff whom they felt close to were not available. Furtherresearch which zeroes in on family members' needs for emotionalsupport may clarify these issues.The need for information during critical illness wasrepeatedly noted in the reviewed literature; however, itsfunction was not clear in the need-based studies. Certainauthors have suggested that information is important to107families during illness because it reduces uncertainty(Hilton, 1988; Mishel, 1988; Snyder & Ford, 1987), helps manageemotions (Snyder & Ford) or sustains a sense of control(Dennis, 1990; Saltzer, 1990). Since all participants in thisstudy came to terms with uncertainty and most admitted torelinquishing control to the health care team, it appears that,during the time period in which they were interviewed,information helped family members regulate their emotions. Thefindings of this study indicated that information tempered thefears of family members, particularly during the early stagesof BMT, generated hope, and, at times, was avoided to uphold asense of uncertainty. Providing information according to theemotional state of the individual may be one important way thatprofessionals address the emotional needs of family members.Participants found it helpful when staff accuratelyregulated the timing, pace and amount of information andunhelpful when information was concealed, unclear, oroverwhelming. Similarly, Thorne (1988) reported that familymembers regarded the attempts of health care professionals towithhold information as intentionally unhelpful and motivatedby a desire to sustain their power. In addition, sheidentified that information sharing was more likely to beviewed as helpful when staff were perceived as being genuinelyconcerned. If information sharing is regarded by familymembers as a way to regulate their emotional state, it is notsurprising that they are sensitive to the way that informationis shared with them. Given these observations it is clearthat, when sharing information, staff must take into account108the family member's emotional state and receptivity to thatinformation. In addition, they must be cognizant of theattitudes toward the family that they convey in the sharing ofthat information.In summary, family members' reasons for suppressing,denying, or disregarding their emotions are complex. No oneexplanation is likely to account for this behaviour. In manyinstances, this tendency may be part of the family members'efforts to cope with their emotions and, at other times,suppressing emotions may signal ineffective or absent emotionalsupport within the individual's network. When denial ofemotions coincides with "immersion" with the transplantrecipient, the individual may be at risk for becomingexhausted. The availability, timing, and nature of theinterpersonal relationship appear to be factors which affectfamily members' perceptions of emotional support.Balancing Hope and Fear The relationship between hope and fear suggested in thisstudy is supported by an anecdotal description of BMT in theliterature (Patenaude et al., 1979). In that account, theauthors described family members' responses according tovarious stages. They stated that, prior to BMT, family membersmanifested high hopes while denying their fear. Once treatmentfor BMT began, fear intensified and during the recovery phase,family members fluctuated between fear and hope. When familiesentered the terminal stage, fear escalated to the moststressful level as family members began to adjust their hope.This description not only corroborates this study's finding109that hope and fear are prominent aspects of family members'emotional responses during BMT, but also provides a broadercontext in which to view the process of balancing hope andfear. Further research is needed to clearly establish thechanging response pattern of family members before, during, andafter BMT.The way that an individual appraises a situation isthought to affect the coping mechanisms they use to deal withthe situation. Lazarus and Folkman (1984) identified two typesof coping: problem-focused coping which is directed towardsmanaging or altering an appraised problem and emotion-focusedcoping which is used when the individual judges that nothingcan be done to alter the threatening conditions. Mishel (1988)proposed that, when uncertainty is appraised as a threat,mobilizing strategies are used to reduce uncertainty andaffect-control strategies are used to manage the emotionsarising from the threat. When uncertainty is regarded as anopportunity, buffering strategies are used to support thatperception.In this study, once family members had accepteduncertainty, their efforts to cope with BMT were aimed atachieving a sense of emotional balance. According to thetheory of Lazarus and Folkman (1984), family members wereengaged in emotion-focused coping. When the data are comparedto Mishel's (1988) theory, all three types of coping strategieswere used by family members. This suggests that uncertaintywas regarded both as a threat and as an opportunity. In asubsequent publication, Mishel (1990) has acknowledged that the110model requires revision to account for situations whereuncertainty is preferable, but not necessarily viewed as anopportunity. The theories presented above provide ways ofunderstanding how the coping strategies selected by familymembers assist them and may also be useful frameworks forfurther research.The observation that those faced with BMT manage theuncertainty by "balancing" different coping strategies was alsoreported by Ersek (1992). She identified three core conceptsfor describing how adults undergoing BMT maintain hope. Theconcept of "dealing with it" referred to the recipients'efforts to confront and experience the negative possibilitiesposed by their situation. "Keeping it in its place" meant thatrecipients controlled what, when, and how they approached thenegative possibilities. The third concept, "the dialectic ofmaintaining hope", represented the dynamic, interactive, andinterdependent relationship between the two previous conceptswhich allowed the recipients to sustain hope while facing alife-threatening illness. Ersek's findings corroborate thisstudy's suggestion family members cope by "balancing" hope andfear. It also appears that the approaches to coping withuncertainty among transplant recipients and family members aresimilar, if not in type, then in their intent.The data revealed that family members coped withuncertainty in very different ways. The "balanced" approachto coping used by the study participants sharply contrastedwith the "overly positive" approach of those family memberslabelled as "cheerleaders". Cheerleaders did not "accept"111uncertainty, focused on maintaining optimism at all times, andwere often described as emotionally distraught. In essence,they denied the risks inherent in the procedure, preferringinstead to maintain the illusion that a positive outcome wasassured.Denial and illusion are coping strategies that are oftenused when a threat is first encountered, when information isdifficult to accept, or when a negative downward trajectoryseems inevitable (Lazarus, 1983; Mishel, 1988). The use ofdenial is not always regarded as maladaptive. In a study offamilies coping with childhood cancer, Munet (1984) describedtwo patterns of coping which she labelled "maintaining denialand illusion" and "blending partial denial with reality" andconcluded that the two were different but equally adaptivecoping styles (as cited by Woods, Lewis & Ellison, 1989).However, outsiders may consider the use of denial and illusionas inappropriate. Peters-Golden (1982) reported that cancerpatients generally regarded "unrelenting optimism" in theirsupportive family members as phoney and upsetting.Participants of this study also regarded "overly positive"people as unhelpful and indicated that, when coping styleswithin the family were dramatically different, intra-familysupport was undermined. Further research directed towards theinteractive effects of coping styles within a family and thelong term effects of various coping styles is needed. What isclear, however, is that professional support may beparticularly important in families where coping styles arevastly different.112Since the emotional well-being of family membersfluctuated with the condition of the patient, it is likelythat, had any participants been interviewed while thetransplant recipient was critically ill or receiving palliativetreatment, family members would have had much more difficultybalancing hope and fear. Brack, LaClave and Blix (1988)reported that, when the BMT recipient's condition deteriorated,many nurses acted increasingly optimistic in spite of theirgrowing pessimism. This tendency may also emerge among familymembers, since many admitted that, regardless of how they felt,they tried to outwardly display optimism to the ill person.The explicit expression of optimism, coupled with repressedpessimism, creates the possibility for conflicting verbal andnon-verbal messages. This "double-bind" communication has thepotential to stifle honest expressions of emotion, underminetrust, increase fear and isolate those involved (Brack, LaClave& Blix). This alerts the nurse to consider the possibility ofdouble bind communication among the patient, staff, and familymembers when the condition of the patient worsens.HopeIn this study, family members generated hope in order tobalance the fear that the transplant may not succeed. Otherauthors have claimed that hope emerges during illness, when thefuture of the individual is threatened, and becomes animportant internal resource during the active phase of cancertreatment (Carnevali & Reiner, 1990; Coulter, 1989). In agrounded theory study of hopefulness in adolescents coping withcancer, Hinds and Martin (1988) theorized that cognitive113discomfort preceded efforts to foster hope. Herth (1990)identified that disillusionment, loss, suffering, uncertainty,and situations which tax personal resources are precursors ofhope. The unifying thread in the above observations is thathope is stimulated when a state of perceived discomfort isencountered. Hope may be especially important when theproblem-focused strategies are ineffective in reducing thethreat. Given that the participants resorted to emotion-focused coping, it is not surprising that family membersconsidered hope an essential component in coping with the BMTexperience.Hope has been regarded as a coping mechanism, an enablingattitude, and as a precursor to personal growth. Foradolescents, hope was one part of a larger self-sustainingprocess that they used to comfort themselves when their healthwas threatened by cancer (Hinds & Martin, 1988). Hope has beenlinked to coping and psychosocial adjustment in patientsundergoing radiotherapy and those receiving chemotherapy(Chistman, 1990; Herth, 1989). Owen (1989) reported thatclinical nurse specialists believed that hope was a "motivatingforce" for cancer patients. Herth (1990) defined hope amongthe terminally ill as an "inner power directed toward a newawareness and enrichment of 'being" (p. 1250). Family membersin this study indicated that, although hope was essential tomaintaining their emotional balance, if allowed to go uncheckedit led to unrealistic expectations. The findings of this studyemphasize the need for realistic hope.In summary, the findings of this study established that114uncertainty is germane to family members' experiences duringBMT, specified factors about BMT which contribute to theappraisal of uncertainty, and described how acceptance ofuncertainty affects the coping style of family members. Thefindings are congruent with previously articulated theories,most notably Mishel's (1988; 1990) Theory of Uncertainty inIllness. For participants in this study, the acceptance ofuncertainty resulted in emotion-focused coping strategies aimedat achieving a balance between hope and fear. The findingsalso suggest that different appraisals of uncertainty arelikely to result in divergent coping styles within a familywhich may create tension. Health care professionals may assistfamily members best by meeting the family member's need fortimely, understandable information shared in a compassionateway, by selectively providing emotional support, and by makingappropriate referrals to support groups when necessary.DisruptionOften family members' descriptions of the disruptions totheir lives were accompanied by explanations of how they hadalready made adjustments using the resources at their disposal.Rarely did family members seek outside help in making thoseadjustments. This finding is congruent with the observationsof other authors, that individuals generally turn first tofamily, friends, and neighbours for practical, emotional, andinformational support and tend to consult professionals forinformational support during a crisis (Norbeck, Weinert,Cardea, Lenz, 1987; Schulz & Rau, 1985; Woods, Yates & Primomo,1989). Therefore, nursing interventions which support the115family's natural help-seeking behaviours and enhance theirexisting support networks may be more acceptable than providingdirect support to family members. Furthermore, professionalsupport may be best targeted toward family members whosesupport networks do not have the knowledge, ability ormotivation to provide appropriate help (Schulz & Rau).The most prominent disruptions that participants describedduring the interviews were those involving changes in theirdaily life and relationships. Many of the adjustments to dailylife were made prior to hospitalization, whereas relationshipadjustments were evident throughout the BMT period. Despitesome adjustment in their view of the future, adjustments inlife outlook were not completely formulated at the time of theinterviews. Since none of the study participants were facedwith declining health of the transplant recipient at the timeof the interviews, it is not known how this factor may affectthe nature of the disruptions these family members experience.Thus, a beginning sense of the order in which family membersattend to the disruptions in their lives emerges. Furtherresearch is needed to more firmly establish these trends and toidentify whether alternate patterns of concern are held bythose families who face a downward illness trajectory duringthe hospitalization phase of BMT.Adjusting Daily Life As expected, the roles and responsibilities of familymembers dramatically changed during BMT. Relocating to adistant hospital has been identified as a major contributor tothe stress of families during hospitalization for BMT (Eilers,1161992; Patenaude et al., 1979). In this study, family memberswho relocated were more likely to have major disruptions intheir daily life; however, distance alone did not fully accountfor the disruption that they experienced. Those whoexperienced feelings of loss, resentment, or concern about theadjustments to their daily routine and those who had littlesupport were more likely to regard the disruptions astroublesome and to have difficulty making the necessaryadjustments. This alerts nurses to those family members whomay need help dealing with their emotional reactions to rolechanges and those who may require assistance to cover theirresponsibilities while in hospital.It is not clear how family members react to the changes indaily life over time. Many BMT survivors continue toexperience fatigue which interferes with their ability toperform everyday activities up to three years post transplantand a significant number of survivors have difficulties re-entering the work force, fully resuming domestic duties, andmanaging the care of small children in the first year aftertransplant (Belec, 1992; Lesko & Holland, 1988). Given thesepossibilities, family members may experience increased stressin their daily life upon discharge from the hospital whencontinuous professional support for the recipient is no longeravailable. Further research on the experience of familymembers during BMT which extends into the post discharge phaseis needed to establish whether disruptions to daily life pose asignificant problem for family members long term.117Adjusting Relationships: Separating and ConnectingThe isolation felt by family members in this study hasbeen noted in other reports of families dealing with cancerillness (Benoliel, 1986; Wortman, 1984). Tilden and Weinert(1987) identified that family members caring for thechronically ill often experience social isolation and impairedsocial relationships which limits the support they receive.During hospitalization for BMT, Patenaude and others (1979)noticed that both local and out-of-town families sought littlesupport from family, friends, or community groups, but becamevery involved with hospital staff. They suggested that, whenfamily members spend most of their time in hospital, it becomesmore difficult for them to feel understood by others and thatexplaining the events of BMT to outsiders in order to beunderstood becomes burdensome. Although participants in thisstudy did not report that they turned to the staff foremotional support, this does not preclude the possibility thatsome family members may do so. In any case, efforts to reducethe isolation felt by family members are likely to benefitthem.Self help groups often arise from a need to supplementexisting support networks. These groups operate on theprinciple of mutual aid which asserts that the individualbenefits not only from the normalizing, supportive, andmodelling functions of the group, but also benefits fromproviding that support to others (Gottlieb, 1985). Such groupshave been used for those coping with various illnessexperiences; however, only one report of a self-help group for118families of BMT recipients was found in the literature.Patenaude et al. (1986) reported the success of a familysupport group organized in hospital using a nondirective mutualhelp approach. The focus of the group gradually shifted fromsharing information to exchanging emotional support. Althoughno formal evaluation of the outcomes was reported, the authorsfelt that the group was successful in reducing family members'feelings of isolation and emotional distress. This approach toproviding support to family members may be especially helpfulfor those family members who are separated from their supportnetworks by great distances and those whose networks are unableto provide meaningful support.Family members in this study connected with people theyregarded as helpful and understanding and separated from thosewho were not coping well or who undermined the participant'sown efforts to cope. Rawlins (1989) described a similarphenomenon among caregivers of dependent homebound individuals.She identified that caregivers attempted to connect withpositive, empowering, and helpful resources that assisted themin meeting their needs and that, since attempts to connect withthese resources were largely trial and error, the process of"connecting" included some instances of "misconnecting" withpeople or agencies which eventually proved to be unhelpful.Caregivers who were able to persist, despite such"misconnections" and subsequent "disconnections", wereeventually able to develop supportive connections. The BMTexperience appears to precipitate shifts in interpersonalrelationships based, in part, on changing support needs.119Knowledge of various supportive services in the community andwithin hospital would enable nurses to make appropriatereferrals to family members who are seeking to expand theirsupportive network and, when making these referrals, nursesmight also encourage family members to persist in theirefforts.Participants reported that often the most meaningfulrelationship change was an increased closeness to thetransplant recipient, a finding supported by other research(Belec, 1992; Van der Wal, 1988). This study and others haveidentified that this increased sense of closeness is oftenregarded as one of the positive outcomes of the BMT experienceand is fostered when the family is able to be physically closeto the hospitalized patient, adopts a more open communicationstyle, becomes more interdependent, and renews theirappreciation for each other (Baird, 1988; O'Connor et al.,1990; Van der Wal; 1988). Nursing interventions andinstitutional policies which foster these aspects may promotefamily ties. However, not all families reported these changeswhich allowed this closeness to the ill person to develop.Nurses must, therefore, be cautious about assuming that allfamilies will perceive benefits from the BMT experience.Adopting a Support RoleAs predicted, family members regarded themselves assupport providers to the ill person. The individuals in thisstudy represent a subset of those affected by the BMTexperience so that it cannot be assumed that all family memberstake on a supportive role or that they do so in the same way as120the study participants. The eligibility criteria specifiedthat study candidates must be available to the researcher and,as a result, only family members who frequented the bedside andwho were, therefore, more likely to be engaged in a supportiverole, were recruited into the study. Research which includesfamily members who are less involved with the transplantrecipient on a day to day basis and those separated by distanceis needed to augment these findings.The supportive actions of family members were similar intheir intent, but the means by which they were achieveddiffered according to the individual's beliefs. Surprisingly,no gender based difference in the support offered to thetransplant recipient was detected. One possible explanationfor this finding is that other factors, such as family helpingnorms or personal beliefs, more strongly influenced the styleof support provided than did gender. Further researchinvolving larger numbers of participants may be needed todetect different support styles.Family members in this study believed that "being there"to support the ill person was important for a variety ofreasons. Larson (1992) reported that BMT recipients expressedthat they wanted their family members to "be there" for themand were disappointed when this did not occur. Pettigrew(1988) noted that, during times of times of suffering, crisis,tragedy, or grief, support is often defined as "being there".When the need for proximity to the patient is understood inthis context, the basis for facilitating family interactionbroadens to include benefits for the patient, family members,121and the whole family.This study identified the motives and strategies of familymembers who took on the support role, but did not determine theeffectiveness of that support. Lewis (1990) pointed out thatfamilies do not always know how best to support their illmembers. Future studies which seek the perspectives of bothfamily members and recipients would establish whether theintended support was helpful to the ill person and may providesome guidelines for family members who support the patient. Inaddition, research which determines the helpful actions ofnurses and other support staff from both perspectives atvarious phases of BMT would be useful in establishing acomprehensive plan for providing family-centred support.In the literature review, various problems associated withproviding support were discussed; however, during theinterviews none of the family members indicated that theirsupport role was a significant source of stress for them. Onlytwo types of comments hinted at deleterious effects ofproviding support. One participant identified that continuallyconveying information to other family members was stressful andanother was doubtful about her ability to fulfil the supportrole. More often, participants identified the uncertaincircumstances as stressful. Mishel and Murdaugh (1987)reported that spouses of heart transplant candidates were onlyable to acknowledge their exhaustion and fatigue and to beginexpressing their feelings about the stressful events once theill person was hospitalized. Leavitt (1989) cited studies ofvarious illness experiences when she concluded that family122members often delay the expression of their emotions untilafter discharge from the hospital. Perhaps family members whosupport the transplant recipient also experience the "burdens"of caregiving over time or after the hospitalization phase.Once again, this points to the need to extend this study intothe post-transplant phase of BMT.Adjusting Life Outlook Participants of this study not only faced the disruptionsposed by BMT, but also had to deal with a recent cancerdiagnosis or had been living with cancer prior to thetreatment. Cancer tends to generate a search for meaning amongthose touched by the illness which involves a restructuring andrevaluing of attitudes towards self, life, and others (O'Connoret al., 1990; Spiegel & Yalom, 1978). Such shifts in lifeoutlook have been previously reported among BMT donors and BMTsurvivors. Van der Wal (1988) revealed that adolescent bonemarrow donors changed their philosophy of life after "losingtheir innocence", "gaining an awareness of their ownmortality", and "appreciating the life of their ill familymember". Survivors of BMT reported that a reassessment oftheir priorities and values resulted in a greater appreciationand enjoyment of life and more time spent with their family(Belec, 1992). Family members in this study were justbeginning to articulate similar changes. Both of the above-mentioned studies interviewed donors and survivors at least oneyear after the BMT, supporting this study's conclusion that theadjustment of priorities becomes evident once the immediatecrisis of the transplant has subsided.123Speculating that something positive would arise out of theBMT experience was difficult for some participants, especiallyin the first weeks of the transplant; however, in a few of thefinal interviews, family members did express some positiveoutcomes. Mishel's (1990) re-conceptualization of uncertaintyin illness incorporates chaos theory to explain how uncertaintybecomes viewed as an opportunity. Accordingly, whenuncertainty disrupts the meaning of everyday events, theindividual, compelled by a need to structure meaning, graduallyreworks the evaluation of uncertainty as an aversivecircumstance into one that recognizes opportunity. Thisprocess can be aided or deterred by previous experiences,physiological status, available social resources and healthcare professionals. Thus, catastrophic illness is seen as anevent which has the potential to stimulate the individualtoward "a new, higher order, more complex orientation towardlife" (p. 260).One description of a cancer support group which fosteredan opportunistic view of illness was found in the literature.Munson (1992) described a group program for patients andfamilies facing life-threatening illness which focused onturning the experience into an opportunity for growth. Theprogram focused on developing knowledge and skills in thefollowing areas: the process of reframing, healing,communication, stress management, wellness, mind/body/spiritconnections, and peer support. While the group's methodmirrors the educational and information-sharing methods used intraditional support groups, the aim of the group is strikingly124different. It is unlikely that family members embroiled in theBMT event would be ready to receive such support; however, thistype of support may be helpful to some family members once theinitial strain of BMT dissipates and adjusting life outlookbecomes a focus for concern.Not all family members would likely benefit from this typeof support group. Mishel (1990) identified that thereevaluation of uncertainty as an opportunity would likely beblocked when: 1) families reject a probabilistic orientation tolife, 2) the patient acts as caretaker of the family and in sodoing, delays the reaction to the illness, 3) patients [orfamily members) are isolated, and 4) families are supported byhealth care professionals who seek predictability andcertainty. Referral to support groups should take intoconsideration these factors and the nurses referring familiesmust make an effort to match the needs of the family with theaims of the group.Changes in family members' perceptions of time were anunexpected finding in this study. Men supporting their wivesthrough chemotherapy described the frequent periods of waitingas timeless, indicating that they also experienced alterationin the passage of time (Wilson & Morse, 1991). Spiegel andYalom (1978) reported that cancer patients developed anappreciation of time which, they believed, promoted an interestin personal growth. Herth (1990) reported that the terminallyill, in restructuring the basis of their hope, focused more ona state of being rather than doing or having. Some evidence ofthis existential awareness of time was also observed among the125study participants, which likely reflects the initial stages ofrevising their life outlook. Similarly, the alterations tomemory, concentration, and time sequence reported by theparticipants may signal the major disruptions to the meaning ofevents that accompanies a confrontation with life-threateningillness.SummaryIn summary, the findings of this study contribute to thecurrent knowledge base by adding the perspective of familymembers to the literature on BMT. In addition, many previouslyrecorded aspects of the illness experiences of family memberswere further corroborated.Clearly, the meaning of BMT varies among family membersand, to any one person, BMT may have multiple meanings. It isunlikely that professionals are able to discern those meaningssimply by observing family members, since the interpretationsof professionals are apt to become embedded in their ownviewpoints. Rather, family members' perceptions of BMT arebest determined by asking family members to articulate what BMTmeans to them and their lives. In this study, the sharedmeanings were often complex and sometimes surprising. Themultiple meanings of BMT evident in this study were voiced interms of: 1) how it affected the life of the transplantrecipient (life-saving and life-threatening procedure), 2) itseffect on the recipient (radical treatment, unpredictablerecovery), 3) their estimation of it as a medical treatment(pioneering venture), and 4) its effect on their lives (suddenand unexpected interruption).126As in many illness experiences, uncertainty plays asignificant role in the BMT experience of family members.Although the initial reactions to uncertainty may includedenying the uncertainty, creating illusions, and seekingevidence of certainty, eventually, family members realize thatto manage their emotions and offer genuine support to thetransplant recipient they must come to terms with uncertainty.This realization is encouraged by the information presented byhealth care professionals which clearly reinforces theuncertainty surrounding BMT. The shift from preferringcertainty to accepting uncertainty is marked by the ability toacknowledge fear and to generate realistic hope. Aside frombeing able to establish a sense of emotional balance, adoptingsuch a probabilistic orientation also opens up the possibilityfor personal growth. A beginning sense of that growth wasevident in the comments of a few participants which reflectedchanges in priorities and the recognition that some benefitsarose from the BMT experience.Many aspects of the lives of family members were disruptedby the transplant; however, the resources of the family weregenerally adequate to enable them to cope with many of thedisruptions to daily life. During hospitalization of the illperson, family members chose to focus on supporting thepatient, a role which they did not perceive to be stressful orburdensome at the time. In assessing the adjustments to thedisruptions it appears that certain factors may signal a needfor nursing support. Family members who express feelings ofloss, resentment, or concern about the adjustments they have127made; those who feel isolated, receive limited meaningfulsupport from their network, or are separated from their supportnetwork by distance; and those who are having difficultyestablishing a sense of emotional balance or who facecomplications or setbacks in the transplant recipient'srecovery' may benefit from added professional support.Relationship adjustments continued to evolve throughoutthe hospitalization period and adjustments in life outlook werejust beginning to emerge. These changes are likely to continueafter discharge from the hospital. New adjustments in day today routine are also likely to be encountered once the illperson returns home. Referrals to community supports may beespecially important once the support of hospital staff is nolonger present on a daily basis, and should, therefore, beprovided whenever possible. Outside support groups must havegoals congruent with the those of family members to beeffective or appealing to them.128CHAPTER 6: SUMMARY, CONCLUSIONS, AND IMPLICATIONSSummary of the Research Project The purpose of this research study was to explore anddescribe the experience of BMT from the perspective of familymembers. The study was guided by the recognition that cancertreatment affects not only the patient, but family members aswell and that, as a result, family members are legitimatetargets of nursing intervention regardless of their role insupporting the transplant recipient. Bone marrowtransplantation was chosen as the focus of the investigationssince no literature was found which described the impact ofthis treatment on family members.The research method which guided this investigationwas phenomenology. This type of approach provides rich data ona focused area and is therefore, ideally suited to researchquestions posed at the descriptive level. Furthermore, themethod guides the researcher to pursue the perspective of thestudy subjects as opposed to pre-conceived constructsidentified by the researcher. Phenomenology directed theresearcher to explore the BMT from the family member'sperspective in open- ended interviews to discover salientaspects of the experience.Prior to the interviews a review of three major areasin the literature was conducted: the needs of family membersduring various illness experiences, family members living withcancer, and social support. This review established theexisting nursing knowledge in those areas thought to berelevant to family members facing BMT and as such, provided a129basis for the initial questions of the researcher.Interviews conducted with eight participant family memberswere transcribed verbatim from audiotapes and analyzed using amethod similar to that described by Giorgi (1985). From thedata analysis three themes emerged, around which the resultantdescription of BMT was organized. Multiple meanings of BMT,uncertainty, and disruption provided the framework forpresentation of the family members' experiences. Finally,these three themes were discussed in relation to otherliterature and previously recorded study findings.Conclusions One conclusion that arises from this study is that BMThas various meanings for family members. Those multiplemeanings are influenced by the family member's uniqueunderstanding of the procedure, past experiences, expectations,and observations of the events surrounding the treatment andaffect how family members respond to the transplant. Theshared meanings that appear among family members are notnecessarily those held by health care professionals; therefore,understanding the meaning of BMT for family members isnecessary for nurses to truly comprehend what family membersare facing during BMT.A second conclusion that emerges from the findings isthat uncertainty and disruption characterize the experience offamily members during the hospitalization phase of BMT. Thesetwo concepts encompass the major concerns expressed by familymembers and provide the focus for the coping strategies thatfamily members engage in during BMT. The fact that both of130these concepts have been reported in other illness experiencesof family members confirms the centrality of these concepts inunderstanding family members' responses to various types ofillness events.A third conclusion is that the appraisal ofuncertainty shapes the coping strategies family members employto manage uncertainty. As a result of "accepting" uncertainty,their coping strategies were similar in intent: to regulatehope and fear in a balance. Coping strategies designed toacknowledge fear and generate hope allowed family members tolive with the threat posed by BMT.The final conclusion of this study is that, generally,family members manage the disruptions in their lives posed bythe BMT using their pre-existing resources and rarely seeksupport from professionals in the hospital. When this is thecase, it becomes important for nurses to be able to accuratelyassess family members' ability to meet the demands placed onthem by the disruptions and not to assume that all familymembers require assistance.Implications for Nursing PracticeNursing interventions derived from an understanding ofBMT as experienced by family members are likely to be moreeffective than those derived from professionals' speculationsof what it is like for family members dealing with BMT. Thedata from this study enhances that understanding and, hence,provides general direction for nursing interventions aimed atfamily members.131Understanding that BMT has multiple meanings forfamily members discourages nurses from assuming that BMT meansthe same to all family members, and that the meaning given toBMT is similar to the view of professionals. Thus, nurses areguided to determine the meaning of BMT to family members as ameans of understanding their reactions and coping behaviours.The five descriptive motifs identified in the findingsof this study can provide a framework for nurses to begin toexplore the meaning of BMT with their clients. For example,since the decision to proceed with BMT appears to be animportant landmark around which the life-threatening and life-saving motif revolves, inquiring about that decision may enablenurses to get a sense of the client's orientation towardsoptimism or pessimism.Acknowledging the meaning of BMT to family membersbenefits the client in many ways: 1) by making the familymember feel understood, 2) by enhancing the basis for nurse-client communication, and 3) by enabling a nursing approachtailored to evolving needs. In the above example, if a clientadmitted to being unsure about the BMT decision and tended tobe very pessimistic, the nurse would be alert for the need tosupport that client on "bad days" when the transplantrecipient's condition worsened, understanding thatcomplications may serve to confirm the basis of the client'spessimism and heighten that family member's fear.If the notion that uncertainty must first be"accepted" before a sense of emotional equilibrium can beachieved is accurate, then many implications for nursing132practice arise. Efforts to encourage family members to adopt aprobabilistic orientation should be regarded as helpful. Thegoal of such actions would be to have family members "accept"uncertainty. This understanding of uncertainty encourageshealth care professionals who must present ambiguousinformation to family members to do so in a clear,straightforward and honest manner and provides them with theknowledge that doing so may help family members manage theiremotions.At the same time, if accepting uncertainty is aprocess achieved at different rates, then professionals shouldrecognize that receiving ambiguous information is likely to bevery distressing to some family members. For those who havenot "accepted" uncertainty, added support may be required wheninformation does not support the certainty they seek.When the family members' interpretation of successfulemotion-focused coping is applied to the BMT situation, nursesare guided to evaluate the effectiveness of the client's copingstrategies against the criterion of achieving a balance.Viewing coping strategies in this way enables the nurse tounderstand why clients choose particular strategies which, whenconsidered alone, appear to be counterproductive. When viewedfrom the client's perspective, those strategies may be regardedas adaptive under the circumstances. For example, puttingemotions "on hold" may be regarded as maladaptive denial byprofessionals; however, to the family member who is unable togenerate hope or to reduce fear by other means, this strategymay be the only way to manage intense feelings of fear.133The findings suggest that one way to identify familymembers at risk for emotional distress is to assess theirability to attain a balanced emotional state. According to thefindings of this study, family members assessed as beingconsumed with pessimism or overly positive would be more likelyto benefit from emotional support. In addition, the findingssuggest that the context of the situation needs to beconsidered when assessing risk. For example, a client whotends to have few hope generating strategies may be at risk ifa successive series of problems develop during the recipient'srecovery.This study also suggests that the generalapplicability of interventions based on helper-derivedassumptions must be reconsidered. For instance, the adage thatclients can be helped to deal with their emotions by providingthem with an opportunity to ventilate feelings throughempathetic responses of the nurse may not always beappropriate. The findings indicated that, as long as familymembers have achieved some sense of emotional balance, they arenot likely to seek emotional support from professionals.Nurses should assess this balance before assuming that allfamily members benefit from having an outlet for theirfeelings.Family members found certain behaviours from healthcare professionals helpful. Caring behaviours which fostereda sense of connection included taking an interest in familymembers, respecting their uniqueness, fostering their trust,demonstrating concern for the welfare of the transplant134recipient, and communicating in an open and honest manner.Nursing systems, such as the one on the unit where thisresearch was conducted, which promote continuity of caregiversand enable close relationships to develop, would likely beregarded favourably by family members. Adjusting the timing,pace, and amount of information according to the familymember's receptivity to information was also valued by theparticipants. Information was one intervention which familymembers welcomed and which addressed their emotional needs.Since family members were able to manage theiremotions and adjust to the disruptions in their lives to alarge degree using their own resources, the efforts of nursesappear to be best directed toward discerning which familymembers need additional support under what circumstances.Certain factors may assist the nurse in identifying those whowould benefit from professional assistance. Individual factorsinclude those family members who have not "accepted"uncertainty, are unable to acknowledge their fear, or who havefew resources for generating hope. Situational factors consistof those incidents which tax the existing coping strategies offamily members making emotional balance difficult: when supportnetworks are unavailable, ineffective, or otherwise unable tomeet the demand for practical or emotional support, or when thecoping styles within a family are vastly different. Thefindings indicated that family members may be more likely torespond to professionals' offers of support than they were toseek support when they needed it. Therefore, nurses mustremain attuned to the shifting individual and situational135factors which signal a family member's need for support.Referral to support groups may be beneficial for thosefamily members who have needs which match the intent of thegroup or who need to expand their support network. Nursesshould be aware of the various resources within the hospitaland community so that they can refer families to appropriategroups as necessary. In addition, information about supportgroups, including their aims, presentation format, andrequirements of the members, should be made available to familymembers upon discharge so that family members can seek theseservices when they feel ready to do so. In sharing thisinformation, nurses should counsel family members to persist intheir efforts to find a group which meets their needs. Forthose who do not benefit from group support, the nurse mightencourage them to seek support from various individuals withintheir network.The findings of this study provide a basis forplanning general nursing approaches to caring for familymembers during BMT. More research-based knowledge is needed tofurther clarify the role of the nurse in helping family membersthroughout the BMT experience. Implications for nursingresearch follow from this discussion.Implications for Nursing ResearchThis study's approach has proved to be a useful way ofcorroborating and clarifying previous research on BMT andadding the perspective of family member's to existing nursingknowledge. Further research using a phenomenological approachwould be useful to explore the experiences of other sub-groups136within the family.The experience of BMT from the perspective of thetransplant recipient, children and adolescents of therecipient, and family members who remain at a distance from thetransplant centre are needed to get a better sense of how BMTaffects the whole family. In addition, research methods whichcapture the family as a unit, not just individual familymembers, would be helpful in determining the effects on familyinteraction. Inclusion of family members who watch the patientundergo a gradual decline, critical illness, chroniccomplications post-transplant, or palliative care are needed tofully understand the impact of this procedure, since asignificant number of families eventually face these types ofoutcomes.Future studies of family members during BMT need to beextended to include the pre-transplant phase and the post-transplant phase(s). An understanding of the pre-transplantphase may provide nurses with a better grasp of the issueswhich family members face prior to hospitalization. Since itis likely that family members continue to deal with theiremotions and the disruptions in their lives long after themedical crisis of the BMT, investigation of the post-transplantphase would be useful. An understanding the issues which ensueafter the transplant would enable the nurse to prepare familymembers for the post-transplant phase.Some of the findings of this study also warrantfurther research. Designs which include the perspectives ofthe primary support person, health care professionals, and the137transplant recipient may provide a way of determining theeffectiveness of various types of support offered to the illperson. Further research designed to compare the supportoffered and received by each gender may uncover the differencessuggested in the literature. The process of acceptinguncertainty may be further explored using a grounded theoryapproach and extending the selection criteria to include familymembers who are not involved in the care of the ill person on adaily basis and who are, therefore, more likely to present asbeing "overly positive." The concept of immersion needs to beexamined further to determine if and when involvement with theill person becomes detrimental to the supportive family member.The perspectives of both professionals and family members maybe interesting to compare in this regard.Two theories mentioned in the discussion of thefindings may be useful frameworks for future research.Mishel's (1988;1990) Theory of Uncertainty in Illness appearsto be a useful framework for further explorations ofuncertainty during BMT, since many of that theory'spropositions coincide with the empirical evidence presented inthis study. The concept of "demands of illness" reported byPackard, Haberman, Woods and Yates (1991) may be useful forstudying the disruptions that occur during BMT. Assumptionswhich support this concept are congruent with the findings ofthis study and, hence, make this an appealing approach tostudying the BMT experience. These include the assertion that1) illness is a multidimensional stressor, 2) challengesassociated with illness change over time, 3) that human138perception plays critical role in determining what isstressful, 4) the primary sources of stress are the contextualand arise from intra-personal and environmental origins, and 5)that adaptation depends on how the individual managesdisruption.In conclusion, this study provides a description ofthe BMT experience from a select group of family members. Thedescription sketches a beginning outline of the issues faced byfamily members during hospitalization for BMT. 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Cancer Nursing, October,371-374.148APPENDIX AInformation Letter to Family Members Bone Marrow Transplantation: The Experience of Family MembersMy name is JAYE KERZNER. I am a Registered Nursepresently enroled in the Master of Science in Nursing programat the University of British Columbia. From my work on theBone Marrow Transplant Unit I have become interested in theperspective of family members during hospitalization of an illmember of the family. For my thesis I am conducting a study tolearn about the experience of family members during bone marrowtransplantation.Family members of bone marrow transplant recipients areinvited to participate in this study. As a participant, youwould be interviewed about how your life has been affected bythe illness and by the bone marrow transplantation treatment.In the interviews I will ask you to describe what the bonemarrow transplantation period of the illness has been like foryou. You are free not to answer any of the questions I askduring the interview. Although this study may not directlybenefit you, understanding the experience of family memberscould help nurses to optimize the care provided to familymembers in the future.Participation in the study will involve two and possiblythree interviews. One hour will be scheduled for eachinterview. The first interview will be conducted face-to-face;however, the second and third interviews may be conducted overthe telephone. The interviews will be scheduled at a mutuallyconvenient time, either in your residence in the Vancouver areaor in an office in the hospital. The interviews will beaudiotaped and those audiotapes will be transcribed to help merecall the information that has been shared. The audiotapeswill be erased once all scholarly reports have been completed.Confidentiality is assured. Any names which may identifyyou or your family member who is ill, will be omitted from thetranscripts. You are under no obligation to participate inthis study. If you decide to participate you can withdraw fromthe study at any time. Withdrawal from the study will notaffect your care or your family member's care in any way.If you are interested in learning more about this study orparticipating in the study, please inform one of the nurses. Iwill contact you in the next few days, answer any questions youmay have, and, if you are interested in participating, set up atime to meet with you. Consent to participate in the studywill be obtained before the interviews, after we have met. Ifyou have questions or would like to learn more about the study,you may call me at 228-7561 or leave a message for me at thenursing station. Thank you for considering participation inthis study.Sincerely, Jaye Kerzner,R.N.,B.Sc.N.149APPENDIX BConsent to Participate Bone Marrow Transplantation: The Experience of Family MembersI understand that the purpose of this study is to gain anunderstanding of the experience of family members of patientsundergoing bone marrow transplantation. I realize that thestudy will involve two, and possibly three, one-hour interviewsand that the second and third interviews may be conducted overthe telephone. During the interviews I will be asked todescribe what the bone marrow transplantation period of myfamily member's illness has been like for me.I understand that I can refuse to answer any questionsduring the interviews and that I can withdraw from the study atany time. If I withdraw from the study the care given to me ormy family members will not be affected in any way. Noidentifying information will be revealed during the course ofthe study or in the reports of the study.I am aware that the interviews will be audiotaped and thatthe tapes will be transcribed verbatim to allow Ms. Kerzner toanalyze the information received from the interviews. Iunderstand that I can request that the tape or any portion of atape be erased at any time during the study. All identifyinginformation will be omitted from the transcripts. The tapesand transcripts will be kept in locked storage. The tapes willbe erased when all scholarly reports are completed.I understand that the researcher may include excerpts ofthe transcripts in reports of the study but that no identifyinginformation will be included in those excerpts. The onlypeople who might listen to the tapes and see the transcriptionswill be Ms. Kerzner, Dr. Sally Thorne and Dr. Betty Davies(Thesis Supervisors), and a professional secretary who maytranscribe the tapes.If I have additional questions during the course of thestudy I may contact the researcher or the research supervisorsat the numbers below.Researcher: Jaye Kerzner R.N., B.Sc.N.228-7561 (or message at the nursingstation)Supervisors:^Dr. Sally Thorne R.N. , M.S.N., Ph.D.228-7482 (University of British Columbia)•Dr. Betty Davies R.N. , M.S.N., Ph.D.228-7456 (University of British Columbia)150I acknowledge that the study has been adequately explainedto me by Jaye Kerzner, a candidate in the Master of Science inNursing program at the University of British Columbia. I havea copy of the "Information Letter to Family Members" and the"Consent to Participate" form.I hereby give my consent to participate in the study "BoneMarrow Transplantation: The Experience of Family Members".SignatureDate151APPENDIX CInformation Letter to Staff Bone Marrow Transplantation: The Experience of Family MembersMy name is JAYE KERZNER. I am a Registered Nurse and astudent in the Master of Science in Nursing program at theUniversity of British Columbia. From my work as a nurse on theBone Marrow Transplant Unit I have become interested in theperspective of family members during hospitalization of an illmember of the family. For my thesis I am conducting a study tolearn about the experience of family members during bone marrowtransplantation. I believe that an understanding of thisexperience could help nurses to optimize the care provided tofamily members in the future.I seek your help in identifying family members who may beinterested in talking to me about their experience. I plan tointerview individual family members, not groups of familymembers. I have defined family members in my study as, "Anyindividual that the person with cancer identifies as beingsignificant to her or him, regardless of kinship ties, commonhousehold, or marital status."The selection criteria for participants in this study areas follows: Participants must:1) be at least nineteen years of age,2) be a family member of a patient who is undergoingbone marrow transplantation for a hematologicalcancer illness during the present hospitaladmission,3) be able and willing to describe the experience ofbone marrow transplantation from their ownperspective,4) be able to communicate in English,5)^be accessible to the researcher, that is, haveplans to reside in the Lower Mainland of BritishColumbia for at least one week during the illperson's hospitalization. This will allow at leastone face-to-face interview to be arranged.Participants will be excluded from the study if they arejudged by the nursing staff as having the potential to becomeemotionally distressed by discussion of their experience or ifthe transplant recipient is critically ill at the time of entryinto the study. A critically ill patient is defined as apatient with a grave prognosis, as determined by a physiciancaring for the patient.Primary or associate nurses caring for the ill person, whoknow the family, will be asked to approach family members whomeet the selection criteria for this study. The nurse willbriefly explain the nature of the study to the family member,provide the prospective participant with an "Information Letter152to Family Members" and ask the individual if she/he isinterested in participating in, or knowing more about thestudy. The names of interested family members will be passedon to the researcher via one of the Assistant Head Nurses onthe unit or the nurse in charge on that shift.Participation in the study will involve two, and possiblythree, audiotaped interviews. The first interview will beconducted face-to-face and will occur no sooner than one weekafter admission of the ill person to hospital. Subsequentinterviews will be scheduled two to three weeks later and maybe conducted over the telephone. The interviews will bescheduled for one hour each and will be conducted in thefamily's residence in the Vancouver area or in an office in thehospital.Confidentiality is assured and consent to participate inthe study will be obtained by the researcher before theinterviews begin. Family members are under no obligation toparticipate in this study. Participants can withdraw from thestudy at any time and will be assured that withdrawal from thestudy will not affect the care they or their family membersreceive.I plan to present the study proposal to staff on January15th at 1600-1630 and January 16th at 2030-2100. In addition,a copy of the study proposal will be available on the unit. Ifyou have any questions about the study you may contact me or myresearch supervisors at the numbers below.Researcher: Jaye Kerzner, R.N., B.Sc.N.228-7561 (UBC) or 261-6498 (H)or leave a note in my mailbox on the unitSupervisors:Dr. Sally Thorne, R.N., M.S.N., Ph.D.228-7482 (UBC)Dr. Betty Davies, R.N., M.S.N., Ph.D.228-7456 (UBC)Thank you for assisting me with this study.153APPENDIX DTrigger Ouestions for Data Collection1. What has this experience of going through the BMT with^ been like for you?-What expectations did you have about bone marrowtransplantation?-What about the experience has surprised you?-What about the experience have you predicted that hasbeen true for you?-What thoughts or feelings have you experienced?2. What are the most significant aspects of this experiencefor you?-What has made the BMT experience difficult?-What has made the BMT experience easier?3. How has ^ 's transplant affected your day-to-daylife?-How have things in your life changed since the BMT?-How have things in your life stayed the same in spiteof the BMT?-How has ^'s transplant affected yourrelationship with her/him?-How has ^ 's transplant affected yourrelationship with others?4. How have you managed during the BMT?-What has been helpful to you during BMT?-What has not been helpful to you during BMT?-What have you done to cope with the BMT?


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