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The experience of teenagers living with a parent with advanced cancer Brown, Jane E. 1992

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THE EXPERIENCE OF TEENAGERS LIVING WITH A PARENTWITH ADVANCED CANCERByJANE ELIZABETH BROWNM.A., The University of St. Andrews, 1980A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIES(School of Nursing)We accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIASeptember, 1992© Jane Elizabeth BrownIn presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shall make itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed without my writtenpermission.(Signature)Department of  NursingThe University of British ColumbiaVancouver, CanadaDate  October 8, 1992DE-6 (2/88)11AbstractThe purpose of this study was to examine the experience of teenagers livingwith a parent with advanced cancer, and to determine whether the conceptualizationof "fading away", as described by Davies, Chekryn-Reimer, & Martens (1990), reflectsthe teenagers' experience as it does the experience of children over the age of 18years in the same situation. The grounded theory approach to qualitative researchwas the method used in this study.Data were collected through a series of interviews with eleven teenagers whowere living with a parent with advanced cancer. Initial interviews were looselyguided by a set of questions derived by Davies et al. (1990), from their previousresearch on the conceptualization of "fading away". Data were analyzed according tothe constant comparative method of Strauss & Corbin (1990), in order to uncovercore categories. The data were then in a format which could be, first, discussedwithin the conceptualization of "fading away", and second, compared to data fromchildren over 18 years from the research of Davies et al. (1990).Findings revealed that living with a terminally ill parent undoubtedly had aprofound emotional and physical impact on the teenagers in this study. Theteenagers described the phenomenon of shielding which was a useful strategy theyadopted in order to pursue the developmental tasks of adolescence, and to get onwith their own lives despite the worsening situation at home. Four of the sevenphenomena of the conceptualization of "fading away' reflected the experience of theteenagers and three did not. The differences between the two age groups of childrencould be accounted for by developmental stage.The findings from this study provide nurses with a better understanding ofthe experience of teenagers living with a parent with advanced cancer. It providesdirection for assessing, teaching and supporting teenagers living in this type offamilyiiisituation, and offers guidance for working with the parents of these teenagers.Implications for future research include further exploration of different aspects of theteenagers' experience, in-depth examination of the phenomenon of shielding withdifferent populations of teenagers, and a recommendation for intervention studies.ivTable of ContentsAbstract ^Table of Contents^  ivAcknowledgements  viiiCHAPTER 1: Introduction ^  1Background to the Problem ^  1Statement of the Problem and Purpose ^  3Research Questions^  4Definition of Terms  4Significance of the Study^  5Assumptions and Limitations  6Summary^  6CHAPTER 2: Critical Review of the Literature^  7The Impact of Advanced Cancer on the Family^  7Emotional Impact of Advanced Cancer  8Physical Impact and Demands of Advanced Cancer ^ 9Altered Communication, Roles and Responsibilities 10Limitations of the Impact Studies^ 12Family-Oriented Research and the Cancer Experience ^ 13Family-Oriented Research and Advanced Cancer in a Parent^ 14The Impact on Teenagers of Cancer in a Parent ^ 16Limitations of the Studies with Teenagers 19Summary of Literature Review ^ 19CHAPTER 3: Methods^ 21Study Design 21Issues of Reliability and Validity ^ 22VEthical Considerations^ 23Selection of Participants 25Sample Selection^ 25Selection Criteria 26Selection Procedure ^ 26Characteristics of the Participants^ 28Data Collection^ 29Data Analysis. 29Summary^ 31CHAPTER 4: Findings 32The Ending^ 32Redefining 34Burdening^ 37Spending more time at home ^ 38Taking on more responsibilities at home ^39Expressing feelings/repressing feelings 39The Neutral Zone ^ 43Struggling with Paradox^ 43Wanting their parent to live/wishing it were all over ^43Wanting to be at home/wanting to be with friends ^44Pushing thoughts of death away/dwelling on death^44Caring about their parent/resenting their parent^45Longing to be closer/not knowing how to get closer^45Having questions to ask/not wanting to know the answers ^ 46Contending with Change ^ 47Changes in relationships 47viChanges in roles^ 48Changes in socialization with friends ^ 50Change in home atmosphere ^ 51Changes in own health 52Changes in schoolwork^ 52Searching for Meaning^ 53The Beginning^ 54Living Day to Day^ 54Preparing for Death 55Summary of the Similarities and Differences of the Teenagers andthe Adult Children^ 57The Essence of the Teenagers' Experience^ 59Factors Influencing the Teenagers' Experience 60Summary^ 62CHAPTER 5: Discussion and Implications^ 64The Conceptualization of Fading Away: The Fit^ 64Shielding Versus Denial ^ 67The Impact of Advanced Cancer in a Parent on Teenagers^68Emotional Impact of Advanced Cancer^ 68Fear of worsening physical symptoms 69Fear of the future without the parent ^ 71Alleviating fear: Communication 72Physical Impact of Advanced Cancer^ 75Conclusions of the Study^ 76Nursing Implications 77Implications for Nursing Practice ^ 77viiAssessing the teenagers ^ 77Teaching and supporting the teenagers^79Teaching and supporting the parents 80Teaching the community^ 81Implications for Nursing Research 81Summary^ 83Bibliography 84Appendices^ 89viiiAcknowledgementsI wish to extend my deepest gratitude to the eleven teenagers whocourageously shared their thoughts and feelings with me at a difficult and painfultime in their lives. A particular thank you to Jennifer, a great teacher and a muchcherished friend.I offer my sincere thanks to Dr Betty Davies whose mentorship over the yearshas inspired and challenged me to move forward, both professionally and personally.As Chair of my thesis committee she provided guidance, enthusiasm and unwaveringsupport. I would also like to thank the other member of my committee, AngelaHenderson, who over the years has helped me to stay on the path whenever myrebelliousness got the better of me.There are many others who have supported me on this journey, too many toname them all individually. A particular thank you to Tosh for her endless supportand encouragement; to Lis and Anthony for providing me with a sanctuary forwriting; to my parents for assisting me financially; and to my many friends andsupporters at the B.C. Cancer Agency.Finally, I would like to acknowledge the financial support I received for thisproject from the B.C. Medical Services Foundation.1CHAPTER 1IntroductionBackground to the ProblemThere are approximately 100,000 new cases of cancer diagnosed in Canadaevery year. About 26,000 of these cases are women under the age of 54 years andabout 18,000 are men in the same age group (National Institute of Canada, 1989).Over half of these individuals will die from their disease. Many in this age grouphave young or teenage children who experience living with cancer in their family andwho face the possibility, and at times the inevitability, of their parent's death.In the few months preceding death, the individual with advanced cancer iscared for either at home or in hospital. With a trend toward cuts in hospital funding,bed shortages, greater acuity of illness in hospitals, and nursing shortages, moreand more people with advanced cancer will be cared for at home by family andfriends, rather than in hospital. According to Brown, Davies and Martens (1990),many families also prefer to care for their dying family member at home rather thanhospital. Day to day living, however, for these families can lead to feelings of socialisolation, a sense of being tied down, role overload, and physical fatigue (Brown etal., 1990). All family members, not just the person with advanced cancer, feel theimpact of the cancer experience on their daily lives.One predictor of success of the palliative home care experience is theaccessibility and availability of home care services, including visiting nurses (Brownet al., 1990). Nurses are often responsible for assisting the terminally ill cancerpatient and family in planning and providing care, and in coping with the demandsof life-threatening illness. Many home care and hospital nurses consider the wholefamily as the unit of care rather than just the individual patient (Giacquinta, 1977).This viewpoint reflects the belief that an illness experience in one family member hasan impact on every other member and on the family as a whole. Care of the entire2family at home may in many instances prevent hospitalization of the terminally illfamily member as nurses support and educate caregivers, while ensuring symptomsin the patient are prevented or, at the least, well managed. If nursing interventionsare to be appropriate and effective in the home care palliative situation, it wouldseem imperative that nurses have a clear understanding of the impact upon allfamily members of having one of its members dying from cancer at home.Most of the emphasis in the published literature on the impact of terminalillness on the family has focused either on the patient's response to illness or on thespouse's needs or adjustment to the situation. We therefore know very little abouthow the advanced cancer experience affects other family members such as thechildren. The only systematic investigation into the nature of this impact on thefamily as a whole, during the terminal stage of illness, has been done by Davies,Chekryn-Reimer and Martens (1990). In this study, the family's experience isconceptualized as a transition of "fading away", incorporating three phases: TheEnding, the Neutral Zone and the Beginning. Families with children over the age of18 participated in the study but not families with children younger than 18 years.There is no published research to date on the impact of advanced cancer in a parenton the family which consists of one or more adult members and at least one childunder the age of 18 years.It may be anticipated that families with teenagers might perceive theadvanced cancer experience quite differently from other families. There are well-documented conflicts that frequently occur in the well family with teenage children(Grinder, 1973). Most teenagers emotionally withdraw from the family unit andintensify relationships outside of it in order to master the developmental task ofemotional and physical separation from parents. Having a sick parent at homecreates conflict because the process of separation is reversed. Teenagers are pulledin the opposite direction from the natural course of emotional separation and3brought into reintensified contact with parents (Wellisch, 1979). They may feel theirfreedom has been restricted because of this pull toward being at home more, whichmay then lead to feelings of isolation from their friends (Berman, Cragg, & Kuenzig,1988). There is also documented evidence of the difficulties adolescents experiencewhen a parent is fatally ill, such as acting-out behaviour, extreme anxiety and poorscholastic achievements (Rosenheim & Ichilov, 1981; Wellisch, 1979). The feelingsand behaviour changes experienced by these teenagers will undoubtedly haveramifications on the functioning of the family as a whole. At the present time,however, there is no documented research on the family with teenager's perceptionsof caring for a parent with advanced cancer at home.The topic of this research project therefore was the experience of families withteenagers caring for a parent with advanced cancer at home. The data obtained werecompared to the findings of Davies et al. (1990) to ascertain whether theconceptualization of "fading away" was verifiable as a theoretical abstraction forfamilies with teenage children as it was for those with children over the age of 18years. The data from the proposed study has the potential to generate additionalinformation to expand or broaden the conceptualization. This expansion may thenafford the conceptualization more general application as well as greater explanatoryand predictive power (Glaser & Strauss, 1967).Statement of the Problem and Purpose Little is known about the experience of families with teenagers caring for aparent with advanced cancer. It is unclear how family members perceive the impactof the advanced cancer experience on their daily lives. It is also unknown whetherthe conceptualization of "fading away' is as applicable to families with teenagers, asit is to families with an adult child over the age of 18 years.The overall purpose of this research project was to explore and describe theexperience of families with teenagers caring for a parent with advanced cancer at4home, and to determine whether the conceptualization of "fading away" reflected thatexperience.This research project was instigated in two stages. The first was the focus ofthis study and its purpose was to explore and describe the teenagers' experience,and to determine whether the conceptualization of "fading away" reflected theirexperience, as it did the experience of children over the age of 18 years caring for aparent with advanced cancer. The teenagers' experience was compared to theexperience of children over the age of 18 years, using the data collected by Davies etal. (1990). The second stage will be to analyze the data collected from the patientsand spouses of those families with teenagers, so that conclusions may be drawnabout the whole family's experience caring for a member with advanced cancer, andabout whether the conceptualization of "fading away" reflects that experience. Thesecond stage of the project will be initiated on completion of the first, although datafor the second stage (from the patients and spouses in the families with teenagers)were collected during the first stage of the project.Research Questions1. What is the experience of teenagers living with a parent with advanced cancerat home?2. Does the conceptualization of "fading away" reflect the experience ofteenagers when a parent with advanced cancer is cared for at home, as itdoes for children over the age of 18 years who are also caring for a parentwith advanced cancer (Davies et al., 1990)?Definition of TermsThe terms contained in the research questions were defined as follows:Fading away - A transition that occurs for a family during the final stage of lifeof one of its members, as described by Davies et al. (1990)5Advanced Cancer - Cancer for which it is no longer medically appropriate totreat the patient with the intent to cure the diseaseTeenager - 13 to 19 year old child residing in the same household as theirparent who has advanced cancerExperience - The personal meaning that the teenager constructs around livingon a day-to-day basis with a parent with advanced cancer.Significance of the StudyEach year more and more individuals are affected by cancer at a younger age(National Institute of Canada, 1989). This fact, along with the recent trend awayfrom hospitalization at the end stage of life, dictates an increased demand fornursing care of the whole family, as the family takes on the prime responsibility ofcaring for their dying family member at home. A description and conceptualizationof the teenager's experience living with a parent with advanced cancer will providenurses with an increased understanding of that experience so that appropriate andeffective interventions can be designed for those teenagers who are an integral part ofthe family unit requiring care. This increased understanding will assist nurses toanticipate problems and design appropriate interventions to address existingproblems and prevent future problems. It will also help to prevent nurses fromplanning care based on their own assumptions and biases about the experience ofthe teenagers caring for a parent with advanced cancer at home.This study adds to existing knowledge about families living with advancedcancer in one of its members by examining the teenager's experience within thefamily It also comments on the relevance of the conceptualization of "fading away"for those teenagers who are living with a parent with advanced cancer. By buildingtheory from the ground up in an inductive manner, as opposed to a deductive one,the meaning of the experience and its context for the family as a whole is preserved.6Assumptions and LimitationsThe following two assumptions are inherent in the proposed study:1. Living with a family member with advanced cancer has an impact on the day-to-day lives of all family members, including the teenagers;2. Families can be viewed as open systems, with each member's responseaffecting every other member's response, all members being interdependent.A limitation of the study was recognized at the outset. The quantity andhence the overall quality of data was somewhat compromised due to the limited timeavailable to the researcher. However, the researcher has had considerable recentexperience interviewing families as a research assistant for a family breast cancerstudy. This experience was expected to aid in the richness and quality of the datacollected.SummaryIn this chapter, the problem and purpose of the overall project were outlinedas well as the purpose of each of the two stages of the larger project. The researchquestions of Stage I of the study were stated and the terms defined. The significanceof the study, the assumptions inherent in the study design, and the one limitationthat was recognizable from the outset were all made explicit.Chapter 2 reviews available literature on the impact of advanced cancer onthe family, and specifically, the impact on teenagers of living with a parent withcancer. The research method used in this study is described in Chapter 3, and thefindings from the interviews with the teenagers are outlined in Chapter 4. InChapter 5, the findings are discussed in relation to existing literature on the topic.Finally, implications for nursing practice and research are examined.7CHAPTER 2Critical Review of the LiteratureIn this chapter, pertinent theoretical perspectives and research studies will beexamined in order to place this study into the context of current literature. Thefollowing four areas of literature will be explored:1. The Impact of Advanced Cancer on the Family;2. Family-Oriented Research and the Cancer Experience;3. Family-Oriented Research and Advanced Cancer;4. The Impact on Teenagers of Cancer in a Parent.The Impact of Advanced Cancer on the FamilyCancer in one individual undoubtedly impacts upon the family in which thatperson resides (Lewis, 1986) as all family members, not just the patient, share thestrain and demands of the illness (Olsen, 1970). Understanding all family members'responses to cancer then is crucial if nurses are to effectively target support to thewhole family.However, most of the research studies to date which profess to examine theimpact of advanced cancer on the family have only investigated the impact onindividual family members, usually the spouse or primary caregiver, and not theimpact on the family as a whole. In fact, only five studies in total were found whichincluded the cancer patient when investigating the impact of advanced cancer on thefamily (Chekryn, 1984; Googe & Varricchio, 1981; Grobe, Ilstrup & Ahmann 1981;Hinton, 1980; Putnam, McDonald, Dugan, & Logue, 1980). Similarly, only one studyincluded teenagers in the interviews of family members of a terminally ill adult(Krant & Johnston, 1977-78). Ideally, when investigating issues such as the impactof cancer on the family, all members of the family unit should be included in thestudy design: the cancer patient, their spouse or partner, and any children or otherfamily members residing in the family home. All members of the family should be8interviewed. This wholistic approach would reflect the belief that the family, not justthe individual with cancer, is the unit of care for nursing.Despite the lack of evidence for this wholistic approach to research in thearea of advanced cancer, the studies in the area do reveal some useful information.Northouse (1984) reviewed a total of 24 studies of which 15 investigated familymembers in the terminal phase of cancer. Similarly, Lewis (1986) reviewed 15studies, of which six focused on the impact of advanced cancer on the family. Thesestudies and several more recent ones comprise the extent of documented reports onthe topic of the impact of advanced cancer on family members. The findings will bediscussed under three headings: 1. Emotional impact of advanced cancer; 2.Physical impact and demands of advanced cancer; and 3. Alterations incommunication, roles and reponsibilities.Emotional Impact of Advanced CancerThe person with advanced cancer is liable to experience a variety of emotionsat different times, such as anxiety, depression, fear of dying, uncertainty about thefuture, anger, and sadness (Clark, 1990). Kubler-Ross (1969) states the naturalgrieving process which occurs for all dying persons is usually accompanied by a widevariety of emotional responses.Family members are most often the primary source of emotional and physicalsupport for the individual who is dying at home (Hinds, 1985; Parsons, 1977; Rose,1976). There is evidence that providing such support often has a negative impact onfamily members, particularly on the primary caregivers. The patient's changinghealth state creates a great deal of uncertainty and stress for the caregivers(Chekryn, 1984; Gotay, 1984; Hinds, 1985; Lovejoy, 1986; Wright & Dyck, 1984), aswell as a fear of the future (Krant & Johnston, 1977-78; Welch, 1981; Wright &Dyck, 1984), and fear of the person dying (Gotay, 1984; Krant & Johnston, 1977-78;Welch 1981). Some family members experience feelings of helplessness and guilt9(Chekryn, 1984; Giacquinta, 1977; Holing, 1986; Krant & Johnston, 1977-78), andseveral described existential concerns (Chekryn, 1984; Gotay, 1984; Krant &Johnston, 1977-78).Vachon, Freedman, Form), Rogers, Lyall & Freeman (1977) interviewed 73widows, 81% of whom rated the period of final illness as extremely or very stressful.Comparing a control group of widows of chronic cardiovascular disease patients andwidows of cancer patients, Vachon et al. (1977) found that the final illness was muchmore stressful for the cancer wives than for the other group. The cancer wivesdescribed feelings of helplessness and frustration at not being able to relieve theirhusbands' suffering. In contrast, the wives of the cardiovascular patients did notdescribe feeling helpless but saw their role as active and useful in relieving theirhusbands' suffering. Similarly, Rose (1976) interviewed 26 spouses of deceasedcancer patients who overwhelmingly supported the claim that caring for a cancerpatient at home is a profound emotional burden. They described a sense ofhopelessness about the situation and indicated that the stress was created from thewide range of demands placed upon them in caring for their ill spouses while tryingto maintain usual family functions. Likewise, Grobe, Ilstrup, and Ahmann (1981)supported this conclusion as 46% of 28 family members of advanced cancerpatients, and 52% of 29 family members of deceased patients, expressed a need foremotional support during the terminal care period. The above studies undoubtedlysupport the idea that caring for a family member with advanced cancer at homeoften has a great emotional impact on family members.Physical Impact and Demands of Advanced CancerCaring for a terminally ill member at home often requires intense physicalwork for family members (Martens & Davies, 1990). The greatest concerns are oftenabout the best ways to handle the patient's physical needs and personal care (Grobe,Ilstrup, & Ahmann, 1981; Holing, 1986; Skorupka & Bohnet, 1982; Welch, 1981).10Holing (1986) interviewed 14 primary caregivers of terminally ill family members.The subjects identified 66 critical events in total during the terminal phase, 69.7% ofwhich were perceived as stressful and 30.3% perceived as joyful. Almost half of thecaregivers identified some physical difficulty in providing care for the terminally illperson, primarily problems in lifting or moving the person. Stetz (1987) also foundthat 69% of 65 caregivers of advanced cancer patients at home reported that thegreatest demand was assisting the ill spouse with activities of daily living andtreatment regimens, as well as coping with changes in the physical and/or emotionalstate of the ill spouse.Caring for a family member with advanced cancer is not only physicallychallenging for family members but also often causes ill health and fatigue (Googe &Varricchio, 1981; Vachon et al., 1977; Welch, 1981). Googe and Varricchio (1981)interviewed 15 primary caregivers of terminal cancer patients being cared for athome and found that 53% lost sleep because of patient care demands. Suchstatements as "too worried to sleep", "having to provide care during the night", and"afraid the patient might die" were cited as examples of family members' statements.Stetz (1987) also reported that 22% of 65 spouses of terminal patients sufferedexcessive fatigue or illness as a direct result of caregiving. The above studies clearlyindicate that caring for a terminally ill family member at home has a physical as wellas an emotional impact on the primary caregivers.Al er Communication.t10Communication within families is viewed as the cornerstone of healthy familyfunctioning and serves to bind together all the subsystems of the larger familysystem (Friedman, 1986). In the family where one member is terminally ill,communication is often strained and talking about death itself may be particularlydifficult. Three studies found that limited discussion about death takes place infamilies Krant and Johnston (1977-78) found that 78% of the 126 family members11interviewed had not discussed death with the dying family member. SimilarlyVachon et al. (1977) found that 61% of the couples in their study never discusseddeath with one another, and Hinton (1981) reported that 65% of the couples hadeither very limited or no discussion of death. However, both Vachon et al. (1977)and Hinton (1981) suggested that non-discussion may be an effective coping strategyfor some individuals. Non-discussion made no difference to the widow's adjustment(Vachon et al., 1977), nor to the anxiety or depression level of the patient (Hinton,1981). In contrast, other studies showed that open communication aids adjustmentin the bereavement phase (Cohen, Dizenhuz, & Winget, 1977) and affects the level ofcloseness in the couple prior to death (Hinton, 1981).As with alterations in communication, there is substantial evidence thathousehold roles and lifestyle are impacted as a result of cancer. Caring for aterminally ill family member at home requires that there be reorganization of theusual family roles and responsibilities. Several studies suggested that familymembers found changes in roles and relationships to be of some concern (Chekryn,1984; Giacquinta, 1977; Gotay, 1984; Stetz, 1987). However, in Lovejoy's sample(1986) of 105 family members, 45% described changes in family responsibilities andpriorities in a more positive light, with many carving out new purposeful roles inrelation to caring for family members. Many found that role change aided in copingwith the situation. Some family members however, found the responsibility ofmanaging the household and finances to be a demand (Lovejoy, 1986; Stetz, 1987)and others commented on the financial difficulties of the family since their familymember became ill (Googe & Varricchio, 1981; Hinds, 1985). Stetz (1987)interviewed 65 spouses of advanced cancer patients in order to describe thecaregiving demands. She found that the second most frequently reported demand(39%) was coping with additional role responsibilities and economic demands.12Limitations of the Impact StudiesAlthough the studies described above provide valuable information about theemotional and physical impact of advanced cancer on family members andalterations in family communication, roles and responsibilities, only one studyincluded teenagers in the interviews with family members (10 out of the 126 familymembers interviewed were teenagers in the study by Krant & Johnston, 1977-78).Very little therefore is known from these studies about the experience of caring for afamily member with advanced cancer in a family with children or teenagers. Onemight expect the experience and perceptions of family members in this family type tobe quite different from those in families without children or teenagers. For example,teenagers may have a need to talk about death within the family because of theirpreoccupation with death at their particular stage in development (Grinder, 1973).Alternatively, teenagers may not feel comfortable talking about death-related issuesbecause of a typical pattern of deterioration in adolescent/parent communication atthis developmental stage (Hunter, 1985). At the present time then, there is littleinformation available about teenagers' experience living with a parent with advancedcancer at home from which to derive family level nursing interventions.As well as discounting the experience of children, the majority of the studiesdescribed above are retrospective in nature, interviewing family members about theimpact of the terminal phase of cancer on them after the family member has actuallydied. This retrospective approach assumes accuracy of recall of past events as wellas assuming that retrospective accounts actually represent the experience as it islived. More data on the current experience, that is, using prospective rather thanretrospective designs, are required in this area and particularly from the perspectiveof the family with children and teenagers.13Family Oriented Research and the Cancer ExperienceAs mentioned above, research studies which are allegedly aimed at assessingthe impact of cancer on the family have almost always interviewed only individualswith cancer and/or their spouse or primary caregiver, and have generally notexamined the perceptions of all family members, especially the children. Lewis,Woods, Hough and Bensley (1989) describe chronic illness in a family as amultidimensional experience which create demands or stresses on individuals whichthen have an impact upon the emotional and physical resources of the family as aunit. Thus, if chronic illness has an impact upon the entire unit, family researchshould reflect this by collecting data on family functioning, with all family membersbeing interviewed individually and as a group.Only one research team was found, headed by Lewis, (Lewis, Ellison &Woods, 1985; Lewis et al., 1989; Stetz, Lewis & Primomo, 1986) which consistentlyinterviewed all family members including young children and teenagers. Theirresearch focused on families living with non-metastatic cancer in the mother. Onehundred and twenty-six families were interviewed (Lewis et al., 1985). Children weredivided into three age groups: 7-10 years, 10-13 years, and 14-19 years. Differentresponses to "The Child's Perception of the Mother's Illness" interview schedule werefound for each age group. Adolescent interviews illustrated teenagers' conflictbetween wanting to spend time with their mother and wanting to "do their ownthing". The authors clearly state that there is a great need to consider the impact ofcancer in the mother on family functioning and particularly on the children andteenagers, so that psychosocial problems will not occur (Lewis, Ellison & Woods,1985). Data from this longitudinal study are still being collected and are obviouslyyielding interesting and useful information for nurses caring for families with cancer.No research has been initiated, however, investigating the family with teenagers in14which the parent has advanced cancer, rather than cancer in the earlier diagnosticor treatment phases.Family-Oriented Research and Advanced Cancer in a ParentThe only research study which 1. expands the definition of the family toinclude the individual with cancer, the spouse and an adult child, and 2. exploresthe impact of advanced cancer rather than non-metastatic cancer, is the one whichis still in progress by Davies, Chekryn-Reimer, & Martens (1990). Eighteen familiesparticipated in the first phase of the study and patients, spouses and children over18 years were interviewed using semi-structured interview guides. All patients weredeemed palliative; that is, they were no longer receiving curative therapies. Thepurpose of the first phase of the study was to examine the experience of familieshaving a member with advanced cancer who was receiving palliative care either athome or in hospital. Conceptual analysis of the data revealed that families were intransition: a transition from living with cancer to dying with cancer. The authorsdescribed the transition as one of "fading away". Fading away is characterized bythree phases, each one describing aspects of the experience and tasks to beaccomplished by the patient and the family members as they come to terms withinevitable death.The first phase, "The Ending", was signalled by a decline in the patient'sphysical condition as the patient was no longer seen as maintaining a plateau ofhealth. Unrecoverable weakness, inability to mobilize, loss of independence inpersonal care, and loss of mental clarity were the four major symptoms whichsignalled this decline. During the Ending phase, families faced two tasks: redefiningand dealing with burden. Redefining occurred as the patients and family membersaccommodated to changes in the patients' health status and began to let go of theold view, seeing the patient in a different way. In redefining themselves, patientsperceived themselves to be a burden to their families and desired to relieve that15burden. Family members did not, however, indicate that they felt the patients wereburdens to them and, in fact, adult children often tried to relieve the patient'sfeelings of burden by concealing their own sad feelings.The second phase, "The Neutral Zone", was one of emptiness characterized byfeelings of fear, loneliness, confusion, and uncertainty. The three tasks of this phasewere: struggling with paradox, contending with change, and searching for meaning.The main struggle had to do with the paradox of living and dying at the same time.Patients struggled with the paradox of wanting to fight to keep going but alsowanting to give up. Family members struggled with carrying on the normal businessof living while caring for someone who is dying. Contending with change occurred atboth individual and family levels. Changes included alterations in roles andresponsibilities within the family, socializing patterns, values or health status.Searching for meaning was one way of enduring the discomfort of the Neutral Zone.The third phase, "The Beginning", reflected subtle shifts toward reorientationand realignment. Those families who had entered this phase had reoriented to life asit is now, and had a perspective of living from day to day. Family members werepreparing for the patient's death. Both patients and family members entering thisphase could describe aspects of personal growth.The way in which these families faced the tasks of the transition was relatedto style and past experience, particularly past experience with loss and death.Individuals and families had different styles and these were reflected in how theymanaged the current transition. The first phase of the Davies et al. (1990) studytherefore provided a detailed description of the experience of families living with afamily member with advanced cancer.The second phase of the study was instigated using a broader definition offamily, to include a spouse and/or an adult child and sometimes other relatives suchas a sibling, niece, nephew, aunt, uncle or good friend. The more traditional16definition of "family" selected in phase I of the study was often found to precludefamilies with other combinations of individuals. Data were collected on eight familiesin order to verify whether the beginning conceptual analysis of the transition of"fading away" accurately reflected the experience of terminally ill patients and theirfamilies. Findings from phase II of the study have not yet been published but dataelicited from the children in their study are used for comparison with the teenagerdata in this study.With an understanding of the issues families face, nurses can more effectivelyassist them "to acknowledge the ending of their life with cancer and to define a newway of living out their final days together as the patient and the family as they haveknown it fades away" (Davies, Chekryn-Reimer, & Martens, 1990, p. 19).The Impact on Teenagers of Cancer in a ParentAlthough there is a dearth of research on families with teenagers caring for aparent with advanced cancer at home, there has been some individual-focusedresearch on teenagers and the impact of cancer in a parent. However, adolescents'responses to death of a parent have been of more interest to researchers than theirresponses to living with and caring for a parent with advanced cancer prior to death.For example, Furman (1985) describes three tasks in the grieving processthat bereaved children and adolescents face: 1. to understand and accept the realityand circumstances of the death; 2. to mourn effectively; and 3. to resume andcontinue the course of living. Furman (1985) and other researchers have identifiedseveral variables that influence the outcome of this grieving process, including theparents' attitudes toward death (Furman, 1985); adolescent's preparation for, andinvolvement in, the mourning process (Adams-Greenly, Beldoch, & Moynihan, 1986;Furman, 1985); subsequent changes in the home and family roles, cultural andreligious beliefs, availability of support systems before, during and after death (Elizur& Kaffman, 1983; Gray, 1987; Hilgard, Newman, & Fisk, 1960); good relations with17the surviving parent prior to loss, and a balanced personality style (Gray, 1987).Although these studies yield interesting data, it is important to note once again thatthe results are based on retrospective accounts in all studies. Hilgard et al. (1960)interviewed adults who had lost a parent as a child; Gray (1987) interviewedindividuals who had lost a parent six months to five years previously when they werebetween 12 and 19 years old; and, Elizur et al. (1983) based their conclusions onparents and teachers' accounts of bereaved childrens' reactions to their fathers'deaths 6 to 42 months previously. There has been no consideration of children orteenagers' perceptions of the experience of living with advanced cancer in a parent.Other researchers report depression and emotional disturbances in adultswho, as children, experienced the death of a parent (Adam, Lorenz, Harper, &Steiner, 1982; Beck, Sethi & Tuthill, 1963; Brown, 1966; Dennehy, 1966).Conclusions from these four studies however may not be generalizable to the largerpopulation as the samples were selected from inpatient psychiatric populations.Three out of the four studies were also conducted almost 30 years ago, thereby notreflecting the growth of the thanatology field since that time.Death of a parent for a child or teenager is always traumatic no matter thefamily environment and external circumstances (Furman, 1985). However, theyoung people may cope more effectively with this trauma if assistance and supportare made available to them during the final few months of living with their ill parent.Intervention with teenagers and children during the period before death may play apart in preventing difficulties in adulthood (Rosenheim & Ichilov, 1981). It wouldtherefore be useful to have an understanding of teenagers' experience living day today with a parent with advanced cancer.Only seven published studies were found which addressed the impact ofcancer on children or teenagers as they experienced it on a day-to-day basis. Four ofthese studies investigated childrens' responses to a parent's cancer at an early stage18in the disease trajectory, usually at the diagnosis/treatment phase (Grandstaff,1976; Lewis, Ellison, & Woods, 1985; Rosenfeld, Caplan, Yaroslaysky, Jacobitz,Yuval & Lebow, 1983; Wellisch, 1979). Only three were found which examinedchildrens' responses to advanced cancer in a parent (Adams-Greenly & Moynihan,1983; Berman, Cragg & Kuenzig, 1988; Rosenheim & Ichilov, 1981). All studiesdescribe the emotional response of the children/teenagers with feelings expressedsuch as sadness, fear, anxiety, anger, self-doubt and shock. Rosenheim and Ichilov(1981) describe a short-term preventive therapy program which aided in decreasinglevels of anxiety in children of fatally ill parents and improving levels of scholasticand social functioning.All of the studies also discussed the impact on roles and responsibilities forthese children, who often take over more household tasks than they had done beforethe parent's illness. Berman et al. (1988) found that some of the adolescentsinterviewed felt their freedom to be restricted, which created difficulties with peerrelationships. Similarly Lewis, Ellison and Woods (1985) reported that someadolescents felt torn between wanting to spend time with their parent and wanting"to do their own thing". They also complained about increased householdresponsibilities and restrictions on the use of the car. However, the same teenagersalso commented on the positive effects of the cancer diagnosis such as bringing thefamily closer together or more time being spent on family activities.Drawing from his clinical experience, Wellisch (1979) reported that theadolescent living with a parent with cancer has difficulty with what he calls thecovert rather than overt role shifts. The covert role shifts, such as the conversion ofthe adolescent into a pseudo partner or confidante for the well parent, may promoteacting-out behaviour. This has been contradicted, however, by Rosenfeld et al.(1983), who did not find adolescents acting out although they did find that teenagersoften suffered from psychosomatic or mood disturbances.19Limitations of the Studies with TeenagersAlthough these few studies reported some interesting findings, most of thedata emerged from clinical practice rather than from a foundation of research. Thedata collected in the study by Grandstaff (1976), for example, were anecdotal andbased on her clinical practice over a two-year period. Similarly, Wellisch's data(1979) were based on six case studies from his psychology practice. Greenly-Adamset al. (1983) reported anecdotal data collected from work with families in the socialwork department at Memorial Sloan-Kettering Cancer Center.Only the studies by Lewis et al. (1985) and Berman et al. (1988) demonstratecommitment to scientific rigour. This suggests that few of the above conclusions canbe generalized to a larger population of adolescents. There is an indisputable need,therefore, for more research studies on the impact of advanced cancer in a parent onthe day-to-day lives of children and teenagers within the family context, so thatinterventions designed by nurses can reflect an understanding of the true nature ofthe experience for all family members.Summary of Literature ReviewAlthough several researchers have investigated the impact of advancedcancer on the family, most have focused on either the patient or the spouse/primarycaregiver. Very few studies have focused on all family members within one familyincluding young children or teenagers. Usually, therefore, only the perspectives ofselected family members are considered rather than the entire family context. Thistechnique fails to recognize that the impact of advanced cancer affects all familymembers and hence the family unit as a whole. Very little is known about theteenager's day-to-day experience of living with advanced cancer in a parent and evenless about their responses within the context of the family unit.The population targeted for this study therefore was teenagers who wereliving with advanced cancer in the family. A qualitative research method guided by20the grounded theory approach (Strauss & Corbin, 1990) was used to elicit adescription of the experience in the words of the teenagers themselves. Thisdescription was then examined in relation to the conceptualization of "fading away'as described by Davies et al. (1990). The experience of the teenagers was thencompared to data from children over the age of 18 years from the Davies et al. (1990)study. The research methods will be outlined in detail in the next chapter.21CHAPTER 3MethodsStudy DesignThe study design should be determined by the research question (Goodwin &Goodwin, 1984; Morse, 1986). In areas where little knowledge exists, qualitativedesigns are appropriate in order to systematically document the issues, concepts,ideas or phenomena under study (Haberman & Lewis, 1990). A conceptualization ortheoretical framework emerges from the empirical data whereby the criticalproperties and dimensions of each concept, along with their relationship with othervariables, are described. This framework is then tested for verification of theproposed theory. From the detailed description of relevant concepts might follow anintervention study which calls for manipulation of these concepts.Qualitative research designs are more than designs. They also represent howhuman beings interact within themselves and with their social environment; they areguided by a "world view". At the core of this view is the assumption that humanbeings create personal and social meanings as they transact with their surrounding(Haberman & Lewis, 1990).The method of qualitative inquiry used in this study was the grounded theoryapproach (Glaser & Strauss, 1967). The term "grounded" refers to the discovery oftheory from data that are anchored in empirical evidence. With this approach, dataare not just organized according to themes but are also interpreted creatively usingconceptual labels. Statements of relationship between the concepts are thenelucidated to bring new insights into the phenomemena being described (Strauss &Corbin, 1990).The conceptualization emerging from empirical evidence in phase I of thestudy by Davies et al. (1990), provided a detailed description of the context in whichfamilies find themselves during the terminal phase of advanced cancer. According to22Glaser and Strauss (1967), verification of theory is crucial in order to establish"major uniformities and universals, strategic variations of theory under differentconditions and grounded modifications of the theory" (p. 27). The purpose of phaseH of the study by Davies et al. (1990) was to verify the conceptualization of "fadingaway" with additional families One aspect of the current study was to verify theapplication of the conceptualization of "fading away" to the experience of teenagerswithin families, and to elaborate on certain dimensions of that conceptualizationbecause of the different conditions.The grounded theory approach in the current study, therefore, was utilized inthree ways: 1. it inspired the development of a conceptualization of the experience ofteenagers living with a parent with advanced cancer at home; 2. it assisted inpotential verification of the conceptualization of "fading away" with a different agegroup of children of parents with advanced cancer; and 3. it allowed the potentialgeneration of new dimensions to that conceptualization of "fading away".Issues of Reliability and ValidityResearch conducted using qualitative methods requires different criteria toassess reliability and validity of the results than those applied to quantitativemethods.Sandelowski (1986) suggested that auditability replace the criterion ofreliability. Auditability exists when another reader can clearly follow the decisiontrail used by the researcher. The decision trail in this study is described in thepresentation of findings, exemplified by excerpts from the data, in Chapter 4. Theease with which the decision trail can be followed was discussed with thechairperson of the thesis committee.Validity refers to the degree to which researchers are actually observing whatthey believe they are observing. Sandelowski (1986) suggested that the criteria offittingness and credibility be used instead of external and internal validity. Direct23observation of the participants during the interviews assisted in validating the datain the audiotaped interviews. Detailed descriptive field notes of subjects, settings,events, activities and behaviours, and reflective field notes of ideas, impressions andhunches were therefore written after each interview to assure fittingness. Credibilitywas addressed by ensuring the participants of the study could immediately recognizethe descriptions generated from the data. As the analysis progressed, the emergingthemes were validated by several of the teenagers, as being descriptive of theirexperience.Other strategies were also used to help assure auditability, fittingness andcredibility. Prior to the interviews, the researcher bracketed her beliefs about theexperience of teenagers, by listing them and acknowledging how they might influencethe interview process. Interviews were tape recorded in order to achieve accurateand precise accounts of the participants' perceptions and reactions to their situation.The thesis committee Chair reviewed several transcribed interviews and wasconsulted during data analysis to ensure that the conclusions could be recognized asemerging from the data.Ethical Considerations Ethical approval for this study was obtained from the Behavioural SciencesScreening Committee at the University of British Columbia, and the NursingResearch Committee of the institution from which participants were obtained.All potential participants received an "Information Letter to Family Members"(Appendix A) that clearly outlined the nature and purpose of the study and theexpectations of the participants. Written consent was obtained from each personwho agreed to be interviewed and a written consent with two signatures (one fromthe teenager and one from the parent on his/her behalf) was obtained from theteenagers (Appendix B). A copy of the signed consent was given to each participant.24Great care was taken to safeguard the teenager's right to refuse toparticipate. Teenagers may have felt obligated to participate if their ill parent hadwished them to. This issue of the teenager's right of refusal was discussed with theparent(s) prior to their discussing participation with their teenage children. Parentswere told that the information from the individual interviews would be kept strictlyconfidential, and that any information that the teenagers or any family membershared in the individual interviews would not be shared with any other familymember. The parents were encouraged to share this information with the teenagerswhen discussing participation with them, and the teenagers were also informed ofthis by the researcher prior to their final consent. The researcher also ascertainedfrom the teenagers that the decision to participate was their own, and that they hadnot been coerced to participate in any way by their parents or any other familymember.Every effort was made by the researcher to protect the rights of theparticipants. They were assured of confidentiality of information at all times: anyinformation that could identify the participant was omitted from the transcripts;audiotapes would be erased after reports were written; audiotapes and transcriptswere stored in a locked drawer separate from the consent forms; and only theresearcher, the transcriber and the thesis committee members had access to thetranscripts. The right to withdraw from the interview or the study at any time wasarticulated to the participants at the beginning of each interview, with the assurancethat withdrawal would not jeopardize care or treatment that the patient wouldreceive. Before each interview participants were informed that they may choose notto answer any question, and that they may request a break from the interview or toleave the interview at any time.The researcher was prepared for the fact that the participants might becomedistressed during the interviews and that in some cases a referral to an outside25resource person would be required. Many of the participants did become emotionallyupset during the interviews but, when asked, none wished to discontinue theinterview. Following one interview, the researcher decided an outside referral wasrequired and, with the teenager's permission, a call was made to a medical socialworker for the teenager to have follow-up counselling.Selection of ParticipantsSample SelectionParticipants were selected for this study using theoretical sampling becauseof its appropriateness to the grounded theory approach. The participants wereselected according to the theoretical needs and direction of the research (Morse,1986). Because the needs and direction of the overall project were to understand thesubjective meaning of the experience to all family members, the object was thereforeto obtain detailed, relevant and comprehensive information. The sample wastherefore selected by the researcher based on the participants' ability to provide suchinformation. Data were collected from all members of the family with teenagers so asto follow the design of the study by Davies et al., 1990. Moreover, all familymembers were willing to participate, and it was thought that collecting data from allmembers in Stage I would also significantly hasten the completion of the wholeproject. The size of the sample was not predetermined because the completeness ofthe theory directed the selection and the size of the sample. The final sample was sixfamilies with a total of eleven teenagers. Effort was made to include both male andfemale teenagers of varying age groups within the range of 13 to 19 years. Thereason for this was that it was appreciated that experiences of teenagers are oftenboth gender and age related. For example, one might expect that the experience of a13-year-old female living with a terminally ill parent would be significantly differentfrom the experience of a 19-year-old male in the same situation. Despite this effortthe majority of teenagers recruited happened to be female It was decided to extend26the age range to 19 years because all but one of the adult children in the Davies etal. (1990) study were over 19 years.Selection CriteriaPrior to the recruitment of participants, certain criteria were developed toguide the selection:1.^The family includes a member who:a) has advanced cancer, that is, who no longer receives curative therapies andwho has been identified by his/her physician as no longer an appropriaterecipient of aggressive cancer therapy;b) is a patient registered at the institution where recruitment is being carriedout;c) is judged by the clinical personnel and the researcher not to be significantlyburdened by participation in the study, such as those whose physical oremotional symptoms are unmanaged;d) may reside with spouse/partner or other primary caregiver such as niece,nephew, sibling, mother, father or good friend.2.^The family includes the patient, and at least one teenage child (13-19 yearsold) who lives at home. A spouse/partner or primary caregiver may beidentified.3. The family members are able to communicate in English.4. The family members are willing to participate in the study and will all beavailable for interview.5.^The family will reside in the Lower Mainland of British Columbia and beaccessible to the researcher.Selection ProcedureThe participants were selected from a cancer treatment facility in a Canadiancity. The expertise of nurses, physicians and medical social workers was used to27identify potential families for recruitment. These intermediaries were given copies ofthe "Information Letter to Family Members (Appendix A) to distribute to potentialfamilies. Prior to distribution, the intermediary was asked to speak with theresearcher to ensure that the family satisfied all selection criteria, and to ensure thatthe intermediary fully understood the purpose of the study prior to discussing thestudy with the potential participants.When a family member expressed interest in participating or learning moreabout the study the intermediary asked permission for the researcher to contactthem by telephone. Over the telephone, the purpose of the study was reviewed,questions answered, and encouragement given for any of the other family membersto speak with the researcher prior to consenting to participate. The family memberwas then asked to speak with the rest of the family and, on agreement from allparticipants, an appointment for interview was arranged.At the first interview each family member was given the chance to ask furtherquestions prior to signing the consent form (Appendix B). A copy of the signedconsent and a copy of the "Information Letter for Family Members" was given to eachfamily member.Recruitment of participants and completion of the interviews took threemonths. Following the individual interviews it had been the intention of theresearcher to conduct a family group interview with all family members present. Itwas thought that data generated within a group would be somewhat different fromdata generated in the individual interviews and hence would add to the overallrichness of the information received. However, it was suspected that the teenagersdid not feel comfortable talking in a family group. In the first family, the teenagerrefused to participate in a group interview because she was "too busy". One of theteenagers in the second family backed out of the arranged family interview becauseof exams, and then decided just prior to the second arranged time that because of28limits on her time she did not wish to participate in a group interview. After thesethree unsuccessful attempts at arranging the group interviews, the researcherdecided to discontinue the family group interviews.Characteristics of the ParticipantsEighteen family members from six different families were interviewed. Elevenof those participants were teenagers, nine females between 15 and 19 years, and twomales 15 and 19 years old. The researcher had hoped to recruit equal numbers ofmale and female teenagers but by chance the first six families who were deemedsuitable for the study happened to consist mostly of female teenagers. All membersfrom four families were interviewed: four patients, three spouses and nine teenagers.The other two teenagers were interviewed to validate the themes that emerged fromthe data of the first nine teenagers and to add to the richness of the data.Three of the seven adults had post secondary education, two had a highschool diploma and two had completed grade ten. Three of the four patients wereunable to work because of the illness and one worked two or three days a week whenhe felt able to. One spouse worked full time, one part time and one described herselfas a housewife. Six of the eleven teenagers were in high school, two had dropped outof school and were looking for jobs, one was finished school and trying to decide on acareer, and two were in post-secondary education.All four of the patients interviewed were males between 45 and 58 years old;of the two families from which only the teenagers were interviewed, the patients wereboth female. Two of the patients interviewed had lung cancer, one had lymphomaand one had colon cancer. Three had been diagnosed less than two years previouslyand one had been diagnosed eight years before. All had been treated in the past withradiotherapy or chemotherapy and only one was presently receiving palliativechemotherapy.29Data CollectionInterviews were conducted with all family members in the first four families,in order to collect data on their experiences living with a member with advancedcancer at home. The question guide for the semi-structured interviews was compiledby Davies et aL (1990) for phase II of their study, and was based on theconceptualization of "fading away" (Appendix C). Two further interviews wereconducted with different teenagers to validate the themes that emerged from theanalysis of the teenager data from the first nine interviews, although themes werealso validated as they emerged through the first nine interviews and in secondinterviews with four of the nine teenagers. A total of twenty-two interviews wasconducted.All interviews were audiotaped and transcribed verbatim. Descriptive andreflective field notes were recorded for all interviews. The participants were given thechoice of being interviewed either in their own home or in the office of the researcher.Six of the eleven teenagers chose to be interviewed in the researcher's office and therest of the interviews took place at the homes of the families. The fact that themajority of the teenagers chose the researcher's office as the location for interviewmay reflect that the teenagers felt that they could share more openly in a neutralspace, away from their family. Prior to data collection, the researcher had someconcern about how openly communicative the teenagers would be when interviewedabout their personal lives. This reservation was unfounded however, because afterthe interviews many of the teenagers expressed how helpful it had been to talk abouttheir situation at home.Data AnalysisAlthough data were collected from all family members in Stage I of theproject, only data from the teenagers were analyzed in this stage. The data from thepatients and spouses will be analyzed in Stage II of the study.30An interview guide was used (Appendix C) to guide the interview although theinterview was not confined by the questions in the guide. The researcher encouragedthe family members to describe their experience using their own words and probeswere used to encourage the participant to explore issues in more detail. Theresearcher allowed the interview to flow like a conversation so that the experience ofthe family member could be fully explored.The interviews and field notes were transcribed following each interview. Theresearcher then listened to the audiotape of each interview while reading thetranscript, to ensure accuracy of transcription and to derive a sense of the interviewas a whole.Data collected from the teenagers were analyzed after each interview. Thisenabled the addition of new questions as necessary for the following interviews andprovided the researcher with an opportunity to present the analysis to participantsfor validation of the meaning intended.The researcher used the grounded theory method of Strauss and Corbin(1990) to analyze the teenager data. Open coding was the first step of analysiswhereby the data were conceptualized and categorized (Strauss & Corbin, 1990).Each observation, sentence or paragraph in each interview was viewed line by line asa discrete incident, idea or event and given a name which represented thephenomenon being described. As the coding proceeded, incidents, ideas or eventswere compared with one another and similar phenomena were given the same name.This process led to an initial list of conceptual labels which were then grouped intocategories, with concepts which pertained to the same phenomena being groupedunder the same category. The phenomenon represented by the category was thengiven a conceptual name which was more abstract than the concepts grouped underit. The list of categories generated in open coding is presented in Appendix D. In31addition to analyzing the content of participants' responses in the interviews, thetranscribed notes and field notes were analyzed using the same procedure.Following the procedure of open coding, which allowed the identification ofcategories, the data were then subjected to axial coding whereby connections weremade between categories by using the coding paradigm of Strauss and Corbin(1990). Data that were broken down in open coding were then put back together in arelational form whereby certain conditions that gave rise to a category were explored.This procedure allowed the researcher to think systematically about the data and torelate them in complex ways (Strauss & Corbin, 1990).Following the analysis of the teenager data and the drawing up of a list ofcategories, the data were then in a format which could easily be compared to theconceptualization of "fading away" with its seven major phenomena (Appendix E).This comparison served to ascertain whether "fading away" was verifiable as atheoretical abstraction for teenagers, and to generate additional information toexpand or broaden the conceptualization. In Chapter 4, the categories that emergedfrom the teenager data are first discussed within the structure of theconceptualization of "fading away" and compared to data from children over 18years. Second, conclusions about the essence of the teenagers' experience arepresented.SummaryThis qualitative research study subscribed to the grounded theory approach.A total of eighteen family members from six different families were interviewed. Allinterviews and field notes were transcribed. Analysis of the data from the eleventeenagers resulted in a description of their experience living with a parent withadvanced cancer, which was then compared to the conceptualization of "fading away"as described by Davies et al. (1990). The following chapter outlines the results fromthis analysis and comparison.32CHAPTER 4:FindingsThis chapter presents the findings from interviews with the eleven teenagerswho participated in this study. Data collected from interviews with the other familymembers will be analyzed in Stage II of this research project.Findings from the interviews with teenagers in this study will first of all bedescribed within the context of the conceptualization of the transition of "fadingaway" as described by Davies et al. (1990). Findings from this study will also becompared to the findings of Davies et al. (1990) from their interviews with children ofpersons with cancer. All but one of the children in the Davies et al. (1990) studywere over 19 years and will be referred to here as adult children. Similarities anddifferences in the experiences of the two age groups of children will be discussed.Second, certain elements that describe the uniqueness of the teenagers' experiencewill be highlighted and third, certain factors which influenced the teenagers'experience will be elucidated prior to discussion of the findings in relation to existingliterature in Chapter 5.Using data from their interviews with families, Davies et al. (1990) describedthe transition of "fading away" as having three phases: The Ending, The Neutral Zoneand The Beginning. Within each phase families faced certain major tasks orphenomena: 1) redefining and 2) burdening, in the Ending phase; 3) struggling withparadox, 4) contending with change, and 5) finding meaning, in the Neutral Zone;and 6) living day to day and 7) preparing for death, in the Beginning phase. Findingsfrom this study will be described utilizing these seven major phenomena as aframework for analysis.The EndingA sudden realization by the patient and/or family member that the patientwas not going to recover marked the beginning of the Ending phase. The realization33that death was inevitable was triggered by a change in the patient's physicalappearance such as increased weakness, decreased mobility or diminishing mentalabilities. Although the realization was sudden, "fading away" was considered bypatients and family members to be a process which occurred over time, as thepatient slowly deteriorated.Although the teenagers in this study acknowledged that their parent wouldmost likely die from cancer, they viewed their parent's physical condition as a seriesof illness events, rather than as a process of slow decline. Each time the parent'sphysical condition worsened it triggered the realization in the teenager that theirparent was going to die. The physical decline signified that the death could happenat any moment rather than signifying the beginning of a slow decline to death:The only time I am deathly afraid he will die is when I see him bunched upover the toilet, or deathly pale and lost 25 pounds and not eating anything,when he is physically sick.The teenagers reacted to what they saw physically or externally, so that whentheir parent's condition stabilized, the teenagers did not perceive this stable periodas part of an overall decline but as a time to be hopeful that their parent wouldrecover. The more physically well the parent appeared to be during the stableperiods the less afraid the teenagers were that their parent was going to die:I was worried when he was in the hospital. Compared to that he is better so Idon't think anything is wrong. But you know I could be totally wrong. Itcould be more inside of him that I don't see on the outside. It's hardsometimes because he is really sick sometimes. Then it seems like there isno hope.Because of the meaning attached to physical symptoms as signifying theimminence of death, there was extreme distress for the teenagers each time theirparent's physical condition declined. Each time physical symptoms worsened, theyreacted as though it was a new realization that death could happen in that moment:I was terrified when he threw up that he was going to die right then andthere. I didn't want to be there. I couldn't help. I just ran out of the room.34The teenagers had little understanding of the expected course of the dying process asone comprised of periods of decline alternating with periods of stability. The actualtime of death therefore was unpredictable to the teenagers who became extremelyfearful each time their parent's physical condition visibly worsened.Location of care also affected the level of distress for the teenager. If theirparent was in hospital for a period of time, it often signified something more seriousthan if the parent was at home, even though the parent was in a terminal stage ofillness at home:It was pretty horrible going in there and seeing him the first day, seeing himin a hospital bed. L. [sister] wasn't there. She couldn't handle it.When the parent was at home the teenager was more likely to view their parent asthey always had, as being well.In contrast to the teenagers, the adult children in the Davies et al. (1990)study saw the slow decline of "fading away" as a process that happened over timeand one which would ultimately lead to their parent's death. They described asudden realization that death was inevitable when they acknowledged the decline intheir parent's physical condition. They found it distressing to face the fact that theirparent was no longer the vital and capable person they had always known him or herto be. Even during periods of relative stability in their parent's health, the adultchildren understood that death was inevitable.RedefiningDavies et al. (1990) described the phenomenon of "redefining" as one whichrequired a shift in how individuals viewed themselves and others if families were tosuccessfully adjust to the reality that death was inevitable. Redefining occurred asthe patient and family members accommodated to changes in the patient's healthstatus and began to let go of the old view of the patient, seeing him or her in adifferent way. This readjustment helped both the patient and the family to cope with35the losses and to identify any gains they had acquired or anticipated acquiring in thefuture (Davies et al., 1990).The teenagers in this study demonstrated a reluctance to redefine theirparent, despite obvious deterioration in the parent's physical condition and depitethe degree to which the ill parent had redefined themselves. They held on to the oldview of their parent as much as they could by trying not to think about the fact thattheir parent was seriously ill:When I look at him I don't see that he has cancer really. I just see himnormally, like I always see him. That's the whole point I never think about it.I try not to think about it.This strategy of not thinking about it helped the teenagers to quell their fears aboutliving in the future without their parent. This was especially true for the youngerteenagers (15 and 16-year olds) who did not want to redefine the future without theirparent. As one 15-year old daughter said,She keeps saying she isn't going to be around for long, that she doesn't knowwhen she is going to go and that really hit me hard, right. I didn't want tohear these things. "No Mum, you're going to stick around. You're going to behere for a long time".Accepting that their parent was going to die would force the teenager to thinkof the future without their parent and to think of themselves as independent andalone in the world:I always feel that my parents are there for me. If he died then I guess I'dreally understand what it's like to be alone, like kind of having to do all thisstuff myself and not having them to always be there for me. And that's thething that always screws me up when I think about that. Because whathappens like if you change your mind, you don't have a job or whatever, youneed some help and your parents are always there and just the thought ofthem not being there. Whoa! Gotta go out and get everything done rightnow, just so I can get on while everything's still good...So I'm basically justliving my life normally and doing everything the same as I would otherwise. Idon't want to think ahead about what it could be.By maintaining the old view of the parent and not redefining him or her, theteenagers did not need to redefine themselves as living in the future without theirparents, and hence need not face their fears of independence. In contrast to the36teenagers, the adult children in the Davies et al. (1990) study did not articulate thesame fears about the future in terms of being alone and not having their parentsthere to depend upon for security. The adult children had already establishedthemselves independently with family units of their own.The teenagers' hesitation in redefining their parent was most apparent duringperiods of stability when the parent had fewer obvious physical symptoms. At thesetimes, the teenagers often felt that their parents could do more for themselves andthat they were using their illness to take advantage of the teenagers' willingness tohelp:Sometimes I don't know if he really is tired or whether he is taking advantageof the situation, so I get mad sometimes. Like he walks all over me becausehe knows I feel sorry for him, feel bad for him. So he's taking advantage ofthat.Another daughter said of her father,He was sitting on the couch and said to my sister "Can you bring me thephone deaf?", like as if he couldn't. He was feeling fine and walking around.The teenagers based their assessments of the seriousness of their parent's illness onthe physical symptoms and when these were not present the teenagers had difficultycomprehending that their parent was any different than before the illness. They heldon to the old view of their parent and resented them when they did not behave asthey always had.Redefining requires an adjustment to the fact that the ill person is vulnerableto death (Davies et al., 1990). For the adult children, this acknowledgementprecipitated them to redefine themselves as also being vulnerable to death and toreevaluate their priorities and values in their own lives. They often resolved to takebetter care of themselves and their health (Davies et al., 1990). In contrast, theteenagers did not redefine themselves as being vulnerable to death as a consequenceof realizing that their parent was going to die. In fact, their behaviour indicated thatthey believed they were invincible. Several of the teenagers described risk-taking or37self-destructive behaviours such as smoking, taking drugs, overeating and engagingin unprotected sexual intercourse. One 19-year old said,Well what could be worse than my Dad dying. I don't really care if I ampregnant. One life ends and another begins. I'd be doing it for my Dad.The teenagers did not question their own mortality, but challenged it by engaging inself-destructive, as opposed to self-caring, behaviours.In summary, the teenagers tried to maintain the old view of their parentrather than to redefine them. Redefining would force the teenagers to confront thefuture without their parent and hence would bring them face to face with their fearsof independence before they were prepared for this transition. Maintaining the oldview allowed them to get on with their own lives but also prevented them fromcoming to terms with the losses and from perceiving any gains from the experience.Viewing their parent's illness experience as a series of events, rather than as aprocess of decline over time, also allowed the teenagers to believe that perhaps deathwas not inevitable and that their own lives could go on uninterrupted.BurdeningWhen patients became unable to take care of their own personal needs or tofulfill their former roles and responsibilities, they relied on family members tobecome involved (Davies et al., 1990). The patient often felt that this wasburdensome for the family although the family did not often concur that this was infact the case. The degree to which the patients felt themselves to be a burdendepended on how much they had redefined themselves. Accepting a new view ofthemselves allowed them to use what limited energy they had, to offer emotionalsupport and encouragement to the family When the old view was retained, energywas used to defend this view and the patient could not comprehend the extent of theburden they were to others nor offer support to their families (Davies et al., 1990).38The teenagers in this study felt significantly burdened by living with aseriously ill parent, regardless of whether the ill parents had redefined themselves ornot.Spending more time at homeThe teenagers spent a lot more time at home than they did before their parentbecame ill. Many thought that they should be spending even more time with familythan they already were. Although most of the teenagers acknowledged that theywanted to be there for their parent, they also tended to view staying at home as anobligation or duty:I am spending more time at home. I'm a bit more conscious of when I shouldbe home and if no one is home I feel it's a bit more of a duty to stay at home.Some felt more burdened than others at having to stay home more and expressed theneed to take breaks away from the situation at home. One 16-year old who wasproviding most of the care for her father said tearfully,I don't like it I feel kind of trapped. Like why is this happening to me? Youcan't leave it. You always know you have to come home to it...I like spendingtime at my friends at the weekend. It's a nice break.The degree of resentment and burden felt by the teenagers, depended on how muchwas expected of them in terms of providing care to the ill parent. It also depended onhow much the parent encouraged or discouraged the teenager from going out withfriends and from getting on with their own lives.As well as needing to take breaks away from the situation, feeling they had tobe there for their ill parent often prevented the teenagers from seriously consideringmoving out of the family home to live independently:I was going to move in with one of my friends, me and her and I thought"What about my Mum? She's going to need me. If I move out it's going to putmore stress on her". But every once in a while I just want to get out.One daughter who had been away from home for two years commented on how hardit had been to leave:39When I left home when I was 17, I wanted to get out of there so badly. One ofthe reasons was because of my father and I just felt so awful for leaving.Taking on more responsibilities at homeAs well as spending more time at home, the teenagers commented on theadded responsibilities they had at home:You feel bad if he does anything. Like if he cooks dinner, I think "Oh, Ishould have been home to cook dinner". I have lots of extra things to do.Like take the dog out which he usually does or put the garbage out which heusually does. I'm not used to doing those.Some of the teenagers resented the increase in household chores as it interfered withtheir own activities:The housework and grocery shopping. We all have to do quite a bit more. Ifind it frustrating because this is my summer. I'm probably just being selfishthough.Some teenagers became defiant about having to stay home and do more chores:Because every once in a while I'll say "No" and she'll say, 'Well you knowwhat I'm going through" and I'll say "I know but I don't want to always be inthe house and doing work and all this. I want to be out sometimes too".Expressing feelings/repressing feelingsThe increase in household chores often led to arguments between siblings:I've had lots of arguments with my sister over who's doing more. Cos you say"Well can't you do this? I did this, this and this". And she'll be like "I loadedthe dishwasher, blah, blah, blah".One strategy for dealing with the arguments over chores was to divide them up fairlyamong siblings:We had to sit down yesterday J. and I and figure out what had to happen."OK relax. Start a little list and we will get time to do it all".Although the teenagers spoke of arguments and tension at home, they alsofelt the burden of keeping the peace at home, as they tried to protect themselves andthe ill parent by repressing their own feelings:40You've got to be careful what you say, because if you say something wrong,she's going to explode. You've got to be more helpful and moreunderstanding because you don't want to say "No" and then she's "OK thenI'll do it myself'. So it's "Yes I'll do this" and "Yes I'll do that". Before it waseasier, you could just say whatever or do whatever. Now you just kind ofwatch what you say.The teenagers felt responsible for not adding more stress to an already tensesituation at home:I don't ever let it surface as anger, and I think that's where my headaches,stress and fatigue comes from. I don't want to cause any more ripples, I don'twant to cause any more problems. There are already enough. I just want tokeep everything as calm as possible.Trying to keep a lid on feelings, however, often led to outbursts of anger orarguments:Sometimes I just get really, really grumpy for no reason. I get really mad forno reason.They talked of how stressful the situation was at home and how "edgy and moody"they often felt. One 18-year old daughter said,I get depressed fairly easily sometimes. You just feel like you are alone. Youjust start digging yourself in deeper and then you just start thinking of all thenegative possibilities that can happen.As well as repressing feelings, the teenagers seldom spoke about their fearswith other family members or friends. As one daughter said,I just don't want to talk about it. It's hard because they can't experience it inthe same sense. I think I'm scared of my emotions. I don't know how to goabout it at a very controlled level so that I don't get overwhelmed.Another said,I know I totally keep all my feelings inside. I don't like getting the feelingsout. I don't feel I could just dig them up any time and open them out. I can'tdo that. I don't have the control or strength to do that.They felt that friends could not really understand what it was like to be living with aparent who was very ill and so the teenagers chose not to share feelings with thosefriends. Repressing feelings and not talking about their fears and concerns was amajor burden for these teenagers.41In summary, burdening was a major phenomenon for teenagers who wereliving at home with a parent in the terminal stages of cancer. Unlike the adultchildren, a major reason for this was because the teenagers were living in the samehousehold as their ill parent. They felt the burden of having to stay at home moreand of having to take on more of the household chores which often led to animositybetween siblings. They also felt restricted when considering a move away from hometo live independently, because of feelings of obligation to be there for their ill parent.They felt the burden of having to keep the peace at home by watching what they didand said, for fear of upsetting their parent. They repressed their feelings whichprecipitated angry emotional outbursts and arguments, and they found it verydifficult to communicate their fears with anyone.The parent's attitude toward the teenager's need for independencesignificantly affected the teenager's feeling of burden or of being trapped at home.The teenagers whose parents encouraged them to stay at home with them felt themost resentful and the most trapped:Like he doesn't even want me to go to university because I wont be close tohome. He can't do that to me. I'm too selfish. He's holding on I think asmuch as he can. I just get so fed up with him 'cos he's just totally houndingme to do things for him.The teenagers whose parents encouraged them to get on with their own lives felt theleast burdened:When I went away for three months Dad said "I'm going to be OK, we willkeep you informed...It's not the end of the world. You are just somewhereelse and you have to deal with that because we can't hold you back, we can'tkeep you here".Adult children in the Davies et al. (1990) study had mixed feelings aboutassuming extra work and responsibilities. They felt exhausted from having addedwork on top of their own responsibilities of their careers, their own children and theirhomes. However, they also felt satisfied that they were contributing to the familysituation. Although the adult children experienced burdening because of their42multiple conflicting responsibilities, most did not live at home with their ill parent.This protected them from some of the burden that was directly linked with living inthe same household as their ill parent. The teenagers were protected from some ofthe burden that the adult children felt of having families or homes of their own totake care of.While the adult children in the Davies et al. (1990) study felt burdened by theconflicting responsibilities of having to care for their sick parent while also having tocare for their own children, home and careers, the teenagers felt more of a burdenwith conflict between what they wanted to do and what they felt they should do: theirsense of duty or obligation to be at home more and their desire to meet their ownneeds for independence.One strategy that both the adult children and the teenagers adopted tohandle burdening was to take time out from the situation. The teenagers spent timewith friends as did the adults. However, the adults used that time with friends toelicit support from them by talking and sharing their feelings, and the teenagersspent time with friends to take their minds off the situation:I don't want to talk about it with friends. I just want to go out and have agood time and not worry about it. So I don't want to talk about it.Another strategy the adult children used was to reorganize their priorities bydecreasing their recreation and social time as a way of handling the burden. Theteenagers also spent less time with friends than they did before their parent becameso ill, but this added to their burden because,I feel guilty when I go out with friends and then I feel guilty when I stay athome.The teenagers' sense of obligation to both their families and their friendscompounded the feeling of burden.43The Neutral ZoneThe Neutral Zone was described by family members as being a time whenthey felt lonely, confused, fearful and uncertain. It was an uncomfortable time whenthey felt their lives were on hold, that there was no moving forward or backward.There were three major tasks which characterized the Neutral Zone: struggling withparadox, contending with change and searching for meaning (Davies et al., 1990).Struggling with ParadoxThe central paradox for the patients in the Davies et al. (1990) study was thestruggle of living and dying at the same time, wanting to fight yet also wanting to giveup. The adult children struggled with wanting their parent to live and yet notwanting their parent to suffer. They wanted to spend as much time with their parentas they could and yet they also needed to get on with their own lives and spend timewith their own children.There were many paradoxes for the teenagers as they struggled with thedevelopmental need to move away from family to independence, and yet at the sametime also feeling compelled to stay at home to be there for their ill parent. Unlike theadult children, the teenagers did not express the need to spend as much time withtheir parent as possible before they died. They did not have the same ability to lookinto the future and see the outcome of the inevitability of death and hence did notfeel the need to make the most of the time left with their parent.Wanting their parent to live/wishing it were all overLike the adult children, the teenagers struggled with the paradox of wantingtheir parent to live and wishing the cancer would go away, as well as wishing itwould all be over. Unlike some of the adult children though who wished it would beover to relieve their parent's suffering, the teenagers wished it would be over torelieve their own suffering:44Sometimes I wish he would get better and sometimes I wish he wouldn't getbetter. I know it's mean to say but that's just the way I feel. I don't want tofeel like this forever. I just want it to be over. Of course I would really likehim to get over this, to quit smoking and once again live a healthy, happy life.I just want some normalcy again, some stability in my life.The teenagers were concerned with the disruption to their lives which preventedthem from getting on with establishing their own identity and independence fromfamilyWanting to be at home/wanting to be with friendsAlthough the teenagers wanted to be at home to help out, there was more of asense of obligation or duty attached to being there than there was for the adultchildren. Many felt guilty about not being at home more and also felt guilty aboutnot spending more time with friends:I asked to go out with my friend and she was really shaky and it was like "Goand lay down, do you want me to stay?" And she's "No, no". Then you worryabout her when you're out with your friends. Is she going to be OK? I shouldbe at home. Because you feel guilty when you go out with your friends andthen you feel guilty when you stay at home.Some teenagers just preferred the company of their friends to their family .Sometimes I feel I should be home spending more time with my Dad and myfamily. My Mum and Dad always get mad because I go out too much, but Idon't like spending a lot of time with my family. Maybe it's because I am ateenager and like spending time with my friends and I get along really wellwith my friends and there is no hassle like asking me questions, prodding meor whatever, what are you doing? What are you going to do next? It'syourself and it doesn't matter in front of your friends. In front of yourparents you have to kind of confine yourself and don't let anything you feelcome out. You just have to see through it first and then let it come out sothat it's appropriate.The pull towards being a normal adolescent was intense, their own needs forindependence coming to the fore to vie with the obligation they felt to be at homewith family.Pushing thoughts of death away/dwelling on death The teenagers had a tendency to try and push away the reality that theirparents were going to die, which the adult children tended not to do. Manyteenagers talked of trying not to think about it and yet they also commented on the45fact that they dwelled upon the fact that their parent might die. Some adamantlyclaimed that not much had changed for them, and yet later comments suggestedthat there had been some major changes for them in their lives:No nothing has changed that much actually. It's just like it hasn't really hitme in an overall way. I just don't think about it really...You just startthinking, it makes you think about what things would be like, what youwould do, what would happen to the family?The teenagers were able to get on with their own lives by perceiving things at homeas being relatively unchanged and yet they often found themselves thinking aboutthe situation and worrying about the future.Caring about their parent/resenting their parentThere was a paradox for the teenagers of feeling empathy for their sick parentand wanting to do things for them, and yet also feeling resentful toward them forusing their illness to take advantage of their willingness to help:It's kind of like brought us together because something has happened andyou feel more for her, like not pity but you want to help her. But sometimes Idon't like it because she uses it more like a weapon sometimes. That kind ofbothers me.Feelings of empathy alternated with feelings of resentment at being taken advantageof. Although the adult children in the Davies et al. (1990) study expressed empathytoward their parent they did not articulate perceiving that their parent was takingadvantage of them in any way.Longing to be closer/not knowing, how to get closerAlthough the older teenagers acknowledged an increasing level of closenessbetweeen themselves and their parent, the younger teenagers felt a longing to drawcloser to their parent. However, they did not know how to do this nor did theyparticularly want to. These teenagers tended to view themselves as outsiders to thefamily not wanting to do "family stuff'. They were more interested in spending timewith friends than with family but felt there was something missing in their46relationship with their parent. They described themselves as not needing to be closeto family and yet, paradoxically, they expressed a desire to be closer:I wish that we were all closer, but that's the way I have always been, alwaysoff doing my own thing, always off doing whatever, never been around doingthings with the family So I've thought about that, doing regular home lifethings but how would I go about doing it? It's something that I've never reallydone.The teenagers explained the difficulty they had with this paradox of wanting to becloser but also not wanting to be closer:I want to talk with him more but it's not something that's going to come easyto me, the wanting is there logically, but emotionally it isn't. I want to sharemore with him but it's so hard. Like 'cos from staying clammed up for solong it's just so hard to bare my soul to him, just all at once, it takes so long,so hard. I want to be able to but feelings-wise I don't want to, like I couldn'treally care less really. I have a strong sense that I don't want to, but I dowant to because I do love him and I don't want him to die thinking thatmaybe I don't love him or whatever.This clearly illustrates the paradox of wanting to share and be close with the illparent and yet emotionally not having the means to do this.Having questions to ask/not wanting to know the answersMost of the teenagers felt that they had all the information they wished aboutthe disease itself but often had unanswered questions that were not related to theillness. The questions had more to do with the future in relation to themselves.None of the parents had discussed with their children specific plans for the familyafter the ill parent had passed away. The teenagers had questions such as,What's going to happen around the house? Will my Dad go with someone elseor is he going to stay with us or what's going to happen with us? What wouldhappen if he dies from cancer? What would it be like around the house, howwould our lives change?Although the teenagers had questions about the future, they were also uncertainabout whether they really wished to have answers to those questions:47I think I'd rather have them more as questions than to find out. Because ifthey get answered I may not like them. I'd rather just think about the goodthings. Yeah, cos I thought about getting them answered. I thought wellshould I ask? I thought No, I'll just leave those questions.Like these teenagers, the younger adult children in the Davies et al. (1990)study commented on the paradox of wanting to know the details of the parent'sillness and prognosis and yet not wanting to ask. In some families the parentswanted to protect their children by not giving them full details. This withholding ofinformation created a feeling of uncertainty about how thay should communicatewith their parents (Davies et al., 1990).In summary, there were many paradoxes for the teenagers in this study. Thecentral struggle was between getting on with their own lives and yet feeling anobligation to spend more time at home than they necessarily wanted to. Theteenagers also struggled with trying not to think about the situation at home and yetfound themselves dwelling on it. They had a longing to establish a closerrelationship with their ill parent and yet emotionally did not have the means toinitiate this. They had many questions about what the future would hold for thembut they did not necessarily want answers to those questions. The main strategythat the teenagers used to be able to get on with their own lives was to try not tothink about the fact that their parent was going to die. This conscious repression offeelings acted like a shield protecting them from fear and allowing them relativefreedom to focus on their own lives.Contending with ChangeChanges in relationshipsThe teenagers felt a shift in dependency between themselves and their illparent:I suddenly realized that I could no longer depend on my Mum as a motheranymore. She has become more of a friend to me or I am more like a motherto her. That feels kind of strange.48They also commented on other aspects of their relationships with familymembers that had changed. The older teenagers felt that they had become closer tothe ill parent:My Dad has been willing to give out more, not necessarily materially, butemotionally, and I have been able to take from that what I need and what Iwant. I just think my father's and my relationship has improved a lot.The younger teenagers thought that they could be closer to their ill parent andwanted to, but often did not know how to go about changing the relationship:I'd like to be closer to my Dad but I never seem to do it. I've thought aboutthat but how would I go about doing it?Although the teenagers argued more with their siblings particularly overdoing household chores, most of them also felt that they had become closer to theirsiblings through their parents' illness:After this happened we did get a bit more open. We didn't talk a lot aboutDad but we talked about weird things like clothes and I'm happy about that,to be more open with each other. [My brother] is not good at telling anybodythe way he feels.Like the teenagers, the adult children in the Davies et al. (1990) studydescribed changes in their relationships. They described major changes in theirrelationships with both their parents as they now felt they were expected to parenttheir parents. Like the teenagers, they experienced a shift in dependency roleswhich they often perceived to be a burden.Changes in rolesAs well as changes in relationships, both groups of children experiencedchanges in their roles within the family. Although most of the teenagers were notexpected to assume legal or financial responsibility for the family, one teenager wasexpected to take on the responsibility of caring for his mother after his father passedaway:49He's putting a lot of trust in me to take care of the family if it doesn't all workout. He's looking at me to be in charge of the household. I'm going to have tolook after my Mum too. That's the thing he's concerned about most. He'sreally concerned about how well she'll handle it, and he wants me to be therefor her.Unlike the teenagers, the adult children were expected to assume responsibility forfinancial, legal and emotional support, as well as for some of the physical care oftheir parents (Davies et al., (1990). Only one teenager was responsible for providingthe majority of the emotional support and physical care for her father. This was amajor role change which the daughter found to be overwhelming:He said, "All I have is you. You are my strength". That took a lot out of mehim saying "You're my strength". I didn't think that was fair of him to saythat. It's like, "Why me?"In the other families with teenagers, the spouse took on the majority of theresponsibility for the emotional support and physical care of the ill parent.Most of the teenagers did however assist with some aspects of the physicalcare of the sick parent:When he gets sick I always stay by him and offer him a glass of water andrub his back if he is throwing up or whatever. Get him a cold towel or a hotwater bottle.Some teenagers were more comfortable than others with providing personal care totheir sick parent, but all teenagers offered assistance in ways that they felt able to.Physical symptoms often created fear that the parent was going to die suddenly andthe teenagers often expressed a need to have someone else close by in case "theworst happened":Well he gets really sick at night and I can hear him up. I can hear himcoughing all the time and getting out of breath and sometimes throwing up inthe bathroom and stuff. And if you needed help it's kind of nice to havesomeone else with you even if just to know someone's there.It was not only caring for their parent while at home but the teenagers alsokept vigil over their parent when they themselves were out with friends. Theychecked in at regular intervals to make sure everything was alright at home:50Well I better go and check on my Mum if I'm out with friends, just to makesure she's fine and everything".The teenagers were genuinely concerned for the well-being of the parent when theywere not at home:It's always there in the back of your mind It doesn't matter where I am orwhat I am doing, alone or with friends around me I have to call my Dad, lethim know that I love him.The adult children spoke about emotionally supporting the well parent whomthey perceived as being very stressed and to not be taking good care of themselves(Davies et al., 1990). In contrast, the teenagers rarely mentioned the well parent'sneed for support nor often commented on their own relationship with the wellparent. They occasionally acknowledged how hard it would be for the well parentwhen their spouse died but made no mention of providing support to that parent.The exception to this was the 19-year old son who had specifically been asked by hisfather to take care of his mother after he died.Changes in socializationBoth the teenagers and the adult children noted changes in socialization withfriends. Both groups spent less time with friends although the adult children puttheir social life more on hold than the teenagers did. The teenagers felt the need "toget away" so that they could stop thinking about things at home for a while. Theyalso felt the urge to get on with their own lives and not to put everything on hold:I just have to get on with my own life. I can't let everything else fall becauseof this.The teenagers commented on the changes they had noticed in theirrelationships with their friends. They felt they had less in common to talk aboutwith their friends since the situation at home had changed:My friends gossiping 'You know what so and so did to me?" I just look atthem. I said "How can you waste your time on that? There's so many moreimportant things in life. There's so much more to life. Why are you lookingat this? It's nothing".51Many of the teenagers commented on the distance they felt had grown betweenthemselves and their friends. They attributed this to the fact that they had had totake on more responsibility than their friends and had had to mature faster:I think I had to grow up quite quickly, by choice I think. I could have turnedinward and become more of a kid. As a result, in some ways its negative, ina lot of ways positive. I've been given a lot more responsibility whichcomplements at certain times, but sometimes it's too much to handle so itbecomes a really stress relating factor.The teenagers also spoke of the experience in terms of making them stronger:I think a lot about this stuff. I have looked at it more from my own side. Whyis this happening? I just tell myself "Well this will make you a strongerperson". I am stronger this time than last time. I have to learn to handle thiscurved ball. I feel I am a long way further though.Change in home atmosphere As well as the changes in roles, relationships and social life, the teenagersemphasized the changes at home in terms of the escalating tension and theincreasing number of arguments. Unlike the adult children who consciously avoidedarguments and discussions that would add to an already stressful situation, theteenagers commented on how stressful the atmosphere was at home since theirparent had become so ill. The arguments appeared to be unrelated to the illnesssituation but were related to mood swings or issues of independence:Well, me and my sister we'll have our days when we are really, really grumpyand then that will set my Mum off and then my Dad gets in on it. I'm muchmore stressed out and I get mad for no reason.One teenager spoke of the arguments related to being treated like a child:Last night I blew up at my Mum and I don't often blow up. I just said I amfed up and I started screaming and it was just like I am fed up being treatedlike a child yet people want me to act like an adult but they still want me tolisten like I'm a child and I just said I'm so frustrated, I just don't want tolisten to you.Emotional outbursts were common, and yet the teenagers felt that often repressedtheir feelings to keep the peace at home:52I don't ever let it surface as anger, and I think that's where my headaches,stress and fatigue comes from. I don't want to cause any more ripples. Idon't want to cause any more problems. There are already enough. I justwant to keep everything as calm as possible.The teenagers felt responsible for not adding to the tension at home and hence keptmany of their own feelings inside. This repression of feelings led to stress-relatedhealth concerns for some of the teenagers.Changes in own health The teenagers explained that their own health had suffered over the last fewmonths since their parent had become so ill. They described stress-related illnessessuch as headaches, fatigue, exhaustion, stomach problems, colds, coughs and flu.As one teenager said,I have had chronic headaches. Every day I would wake up and go to bed withthem and I started going to a doctor and eventually to a specialist who toldme that I would just have to learn to live with it because it was stress.The adult children complained of exhaustion but not of other stress-related illnesses(Davies et al., 1990).Changes in schoolworkThe teenagers also described how their school work had suffered as theyfound it hard to sustain their level of concentration. One teenager had to drop twocourses:I just couldn't keep my train of thought. I felt I should be spending my timewith Dad rather than studying. I guess I was just really exhausted, wipedmentally and physically.Another teenager said she had dropped her marks significantly over the last term.The teenagers who had left school acknowledged that they were having difficultydeciding what direction to follow career-wise. They talked about having littlemotivation or direction, of feeling "up in the ail':It's always there hanging over you and all the decisions you make you have tothink about him in those. It's hard this distraction. I don't feel I deserve itbecause he's not quite on his death bed. Is he sick enough for me to feel thisway?53It was distressing for the teenagers to feel the sense of urgency to get on with theirlives and yet to have difficulty deciding which direction to follow.In summary, the teenagers living with a seriously ill parent had to contendwith many changes in themselves and their behaviour, changes in their relationshipswith family members and friends, and changes in their roles and responsibilities. Asthey acknowledged the extent to which the situation promoted such changes in theirlives, the teenagers tried to find some meaning in the situation.Searching  for MeaningSearching for meaning involved making sense of the situation and putting theexperience into some context (Davies et al., 1990). The teenagers also searched formeaning in their situation and often asked the question "Why me?". They wonderedwhy serious illness had struck their family. Their questions centred aroundworrying about the future rather than around resolving to change their values orbehaviours like the adult children did. The teenagers came face to face withvulnerability related to facing their aloneness in the world unlike the adult childrenwho faced the vulnerability of their own death.As a result of the reality of impending autonomy sinking in, the teenagersexperienced fear of the future which the adult children did not express. They alsoexperienced a sense of urgency to get on and establish themselves in the world"while the going was good". As one son said,My parents are always there for me. I feel like if something like thathappened it would really screw me up. Then I guess I'd really understandhow it felt to be alone, having to do all this stuff myself and not having themthere to always be there for me. Just the thought of them not being thereWhoa! Got to go out and get everything done now while everything's stillgood.There was a significant threat to the teenagers' security as they tried to comprehendthe meaning of their parent's death in terms of its effect on their future.54As they searched for meaning and acknowledged their own vulnerability, theteenagers did not resolve to take better care of themselves as the adults did, toparticipate in maintaining their own health. The teenagers believed that gettingcancer was based purely on chance and that one's own health behaviours had littlebearing on the development of illness:Just happening to get cancer, or happening to get hit by lightning, orhappening to win the Lotto 649. Those are so much due to luck.Rather than engage in health-promoting behaviours like the adult children did, theteenagers often engaged in self-destructive behaviours.Although the teenagers believed that getting cancer was due to chance, theyalso felt that their parent had a responsibility to get well. The teenagers were oftenextremely judgemental if their parent continued to smoke in spite of their poor stateof health:I don't really have hope that he'll get better because he still continues tosmoke and he drinks alcohol with his pills so I mean he's not taking care ofhimself, and if he really wanted to, or at least help, he would stop.Unlike the adult children, the teenagers did not demonstrate much reflectivethinking about the illness in relation to their values or attitudes. The teenagers'thinking was more concrete and revolved around a basic survival need for securityfor themselves. They felt a sense of urgency to get on with their own lives while stillhaving a base from which to launch. The teenagers had to struggle with manyparadoxes, contend with a multitude of changes and throughout the uncertainty ofthe Neutral Zone try to make some sense out of the whole experience in relation totheir own lives and futures.The BeginningLiving Day to DayThe Beginning phase occurred after the families had been able to find somemeaning in their situation. After the turmoil of the Neutral Zone, the situation was55put into perspective and it became clear that living day to day and preparing fordeath was what needed to be done. Living day to day was characterized by makingthe most of the time left and accepting the way things were rather than worryingabout the future (Davies et al., 1990). The adult children tried to live from one dayto the next as they coped with their many conflicting responsibilities, caring for theill parent, their own families and their careers.The teenagers in this study, however, were too caught up with needing to geton with their own lives to be able to live day to day. They consciously tried not tothink about things at home so that they could get on with their lives:I live for tomorrow. I always look forward to things in the future. I can't waittill the weekend or I can't wait till next summer. I always try and push thisout of my head so it's not something I think about every day. I have lots ofthings to do like homework, talking on the phone and other things.The teenagers alluded to feeling trapped by their obligations at home and felta sense of commitment to get on with their own lives:You just have to keep your chin up and keep focused on your other thingsand realize that life's going to go on and what's going to happen is going tohappen. I can't let my school suffer any more because of this.Living day to day would force the teenagers to face the reality of theimpending death of their parent. The teenagers in this study had either not reachedthis phase in the transition, or because of the nature of their developmental drive forindependence, could not afford to focus only on the day at hand but had to continueto move ahead with their own lives as best they could. Their focus away from thepresent to the future and their own lives made it difficult for the teenagers to makepreparations for their parent's death.Preparing for Death Because the teenagers did not live in the present moment, nor thought ortalked much about the situation with their parent, they could not be fully preparedfor the death of their parent. They experienced intense moments of fear that their56parent was going to die suddenly during periods of exacerbation of physicalsymptoms. The lack of understanding of how to gauge the seriousness of eachsituation prevented the teenagers from realistically predicting the actual time ofdeath:About nine months ago now they gave him two to six months to live. So he'sbasically living on borrowed time. That's why I never know what's going tohappen. Like half the time, he'll be sleeping and usually when he sleeps hesnores, right? And I'll walk into the living room or something and he won'tsnore and I'll look at his chest to see if he's breathing and I can't see itmoving so I'll turn on all the lights and he'll wake up. "What are you doing?"I'm not going to say, "Oh I'm just checking to see if you're breathing Dad".Then he'll be mad.In this family the ill parent and spouse were prepared for death, all the plans weremade, the patient reminisced about his life and the spouse talked about how hard itwould be for her after he died. The teenager, like all the other teenagers, wanted toget on with her own life, although she had made a recent decision "to put familybefore friends". Although she had accepted he was going to die, she made suchcomments as,I hope he is around to see me graduate [which would be two yearsi...I don'teven think that he's going to die sometimes, if it happens, well everybody diessometime.At times, the teenager acknowledged that death was imminent and at other timesshe maintained hope that her father was in fact going to pull through.In contrast to the teenagers, the adult children prepared for death by makingpractical preparations such as making legal arrangements as well anticipating theactual time of the death and funeral. They thought about their own future withouttheir parent and their well parent's future without their spouse (Davies et al., 1990).The Beginning phase signified a time when families lived from day to day asthey prepared for imminent death (Davies et al., 1990). The teenagers however,focused on getting on with their own lives, looking into the future and trying not to57dwell on the fact that death was imminent. Looking at death closely filled them withfear for their own future.Summary of the Similarities and Differences Between the Experiences of theTeenagers and the Adult Children Examination of the teenagers' experience living with a parent with advancedcancer within the conceptualization of "fading away' reveals that there are severalsimilarities and some significant differences between their experience and theexperience of adult children in the same situation.Both the teenagers and the adult children felt the burden of taking on theadded responsibilities of caring for their ill parent. The teenagers felt trapped bywhat they perceived to be a hindrance to getting on with their own lives andcultivating their independence from family Both groups of children struggled withmany paradoxes, as they tried to meet the needs of their parents as well as meettheir own needs. The adult children were exhausted by trying to juggle their manyconflicting responsibilities of caring for their parent as well as administering to theirown families, homes and careers. Both also had many changes to contend with intheir relationships with others, in their roles and in their socialization with friends.Searching for meaning in the situation was one way that both groups of childrentried to make some sense out of the situation. Living with a parent with advancedcancer undoubtedly affected the lives of both groups of children in many ways.One of the most striking differences between the two groups of children wasthe fact that the adult children redefined their parents as being different from theparents they once knew, as they adjusted to the inevitability of their parents' deaths,and yet the teenagers persisted in holding on to the old view of their parents as theyhad always known them. Maintaining the old view allowed the teenagers to believethat their lives were not going to change and that they could continue to pursue their58own goals. Redefining their parent as being seriously ill would have forced theteenager to confront their fears of their parent dying and hence their future alone.Another interesting difference between the two groups of children was thatthe adults were able to comprehend the process of dying as being one ofexacerbation of symptoms followed by periods of relative stability, with an overallgradual decline to death. The teenagers however did not understand this processand hence became extremely afraid of death at times when the parent's symptomsworsened. During the stable periods, the teenager felt the parent could be doingmore for themselves and felt hopeful that their parent might recover. This lack ofunderstanding prevented the teenagers from preparing for death as the actual timeof death was completely unpredictable to them.There were some differences between the two groups as a result of the factthat the teenagers lived in the same household as their ill parent whereas the adultchildren did not. The teenagers described a worsening atmosphere of tension andarguments at home and the need to change their behaviour to keep the peace. Theyargued with siblings about household chores and fought with parents about issuesof independence.The teenagers expressed a longing to become closer with the ill parent buthad difficulty knowing how to go about doing that. They had a particular view aboutthemselves that they did not know how to change, nor knew if they wanted to. Theylooked to the future with questions about their own security whereas most of theadult children had already established their own homes, families and independenceand did not need to worry about their own security in the future. Adult childrenexpressed empathy for and offered emotional support to the well parent, whereas theteenager viewed the death of their parent only in relation to themselves and theirown future.59Adult children found it helpful to talk with friends about the situation,whereas teenagers spent time with friends to get away from the situation andpreferred not to talk about it. The teenagers often engaged in self-destructivebehaviours as they tested their own vulnerability, whereas the adults tended towardtaking better care of themselves because of realizing that, like their parents, they toowere vulnerable to death.The adult children were able to acknowledge the imminence of their parent'sdeath and hence could make preparations for the death, making the most of eachday left. The teenagers, however, did not acknowledge that death was a reality andcould therefore not prepare themselves nor make the most of the time left with theirparent.The experiences of each group of children were similar in ways and yetunique in others. The implications of these findings will be discussed in Chapter 5,within the context of existing literature.The Essence of the Teenagers' ExperienceThe conceptualization of fading away as described by Davies et al., (1990)provided a useful framework within which the experience of teenagers living with aparent with advanced cancer could be described and compared to the experience ofadult children in the same situation.The essence of the teenagers' experience became clear, however, through theinitial coding of the data using the method described by Strauss and Corbin (1990).Findings from this initial analysis provided the key to understanding the meaning ofthis experience for these teenagers.The underlying theme pervading all the interviews with the teenagers wastheir intense drive to put their own lives ahead of others and to get on with doing thework of adolescence. Although the teenagers made an effort to be there for their illparent by spending more time at home, assisting with some aspects of physical care,60reassuring their parent and checking in on them when they were out with friends,they viewed the situation as a hindrance to getting on with their own lives.Encountering this hindrance in their lives brought on a host of emotionalreactions for the teenagers as they perceived themselves as being held back in theirlives. Fear was a major emotion underlying many of the actions and behaviours ofthe teenagers. One useful way of ensuring continuance on their developmental pathand to protect themselves from fear, was to shield themselves from the reality thatdeath of their parent was inevitable. They shielded themselves not by denying realitybut by choosing not to think about the situation, by staying positive and by trying toview their parents as they had before they became ill. When the shield was loweredat times, for example when their parent's physical symptoms worsened, theteenagers became overwhelmingly afraid of their parent dying because of theimplications this had for the security of their own future. The shield protected theteenagers from facing a reality for which they were not yet ready.Shielding describes the essence of the teenagers' experience living with aparent with advanced cancer. As the hindrance of living with a seriously ill parentwas encountered and the emotions experienced, teenagers created a protective shieldwhich allowed them to get on with their own lives and to continue to strive formastery of the developmental tasks of adolescence.Factors Influencing the Teenagers' Experience Strauss & Corbin (1990) describe Intervening Variables as factors influencingthe actions taken within a specific context (Appendix D). They are the broaderstructural context pertaining to the phenomenon. There are several factors whichaffected the actions of the teenagers living with a parent with advanced cancer, bothof a personal and a situational nature.Although the researcher had hoped to select an equal ratio of male to femaleparticipants, the sample of teenagers actually consisted of only two males and nine61females. By chance the first six families who fit the selection criteria happened to becomprised mostly of female teenagers. Because of the fact that only two males wereinterviewed, it was not possible to draw any conclusions about whether genderinfluenced the actions of the teenagers or not. One would expect that gender mightaffect the experience for these teenagers.The 15 and 16-year old teenagers often reacted differently from the 17 to 19-year olds. The younger teenagers tended to be even more intent than the older oneson not thinking about the fact that their parent was going to die. The youngerteenagers had developed less independence from parents than their older siblings,and hence one would expect that the threat to their security, and the need to get onwith establishing themselves in the world would be greater. The younger teenagersalso tended to feel more trapped and more resentful than their older siblings andoften spent more time with friends than familySibling order affected the amount of responsibility the teenagers perceivedthemselves to have within the family. The eldest teenagers in two families perceivedthemselves as having more responsibilities at home than their younger siblings. Oneof the two eldest teenagers, a male, was the only teenager who was specifically askedby his dying father to take care of his mother after he had passed away.The unique personality of each teenager was also a personal factor thatinfluenced behaviour. For example, one teenager described herself as the caretakerof the family She made a particular effort to keep her feelings of anger to herself atall times so as not to upset other family members any more than they already were.Thus, the personal factors of age, gender, sibling order and personality all appearedto play a part in influencing the actions of these teenagers.There were also several situational factors that played a part in shaping theexperiences of these teenagers. The relationships with both parents prior to theillness and the length of the illness itself affected the family situation. For example,62the teenagers whose father had had cancer for eight years found it difficult to discernhow many of the changes in their lives were due to the fact that their father was ill orto the fact that they were growing older. One teenager felt she had become muchcloser to her father in recent months but did not know whether this was because shewas older or because he had become sicker.None of the teenagers had talked about the impending death in a familygroup. Some had talked one on one with their ill or their well parent about thesituation and others had not. The ill parent's attitude toward their death and towardthe teenager's need for independence also affected the teenagers' actions. Forexample, the teenagers who were encouraged by their parents to get on with theirown lives felt less trapped and less resentful about spending time at home than theones whose independence was discouraged.The amount of care provided by the well parent and hence the degree towhich the teenagers were expected to provide care also affected the behaviour of theteenagers. The more physical care that the teenagers had to provide, the moreresentful they became about not being able to get on with their own lives. Theteenagers found it more frightening when their parent spent time in the hospital. Itbecame more difficult for them to maintain the old view of their parent as being well,and the reality of the seriousness of the illness was less avoidable.There were many situational and personal factors then which played a part ininfluencing the actions and behaviours of these teenagers who were living with aparent with advanced cancer. Having an awareness of the context surrounding theexperience for these teenagers assisted in enriching the understanding of what thatexperience was actually like for them.SummaryThis chapter described the experience of teenagers living with a parent withadvanced cancer within the context of the conceptualization of "fading away" as63described by Davies et al. (1990). Living day to day with a terminally ill parentundoubtedly significantly hindered the teenager from getting on with the work ofadolescence. The experience of the teenagers was compared and contrasted with theexperience of adult children in a similar situation, from the study by Davies et al.(1990). The emerging phenomenon of shielding was discussed as being the essenceof the teenagers' experience and several factors, of a personal and situational nature,which influenced the teenagers' experience, were emphasized. The following chapterdiscusses the findings in light of existing research.64CHAPTER 5Discussion and ImplicationsIn this chapter, the findings of this study are discussed in relation to thefindings and theories of other researchers. The literature reviewed in Chapter 2 willbe revisited in light of the findings from this study, and other pertinent theories andliterature will be used to bring the findings into a context whereby implications fornursing practice and further research may be extracted. The discussion willillustrate how understanding the perspective of teenagers living within the context ofa family in which a parent has advanced cancer enhances what is already knownabout the impact of cancer on families in general.The Conceptualization of Fading Away: The Fit"Fading away" as a theoretical construct, comprised of seven majorphenomena, provided a useful framework within which the experience of teenagersliving with a terminally ill parent could be described. It became clear through theanalysis that the experience of teenagers is similar in some ways and yet different inothers from the experience of adult children in a similar situation.The phenomena of burdening, struggling with paradox, contending withchange and finding meaning were useful categories within which the experience ofboth the teenagers and the adult children could be described. Although theseconceptual labels certainly described the essence of the experience for both groups,there were also some major differences in the experiences of the two groups whichcan best be described within a developmental context.Havighurst (1972) pioneered work in the area of defining the developmentalstages which an individual encounters throughout the life span, from birth to oldage. In 1952, he defined ten developmental tasks of adolescence which, in 1972,were revised to a set of eight tasks. One of the eight tasks of adolescence is toachieve emotional and physical independence from parents and other adults. As65teenagers begin the process of breaking away from parents, they also need to feel thesecurity that their parents will be there for them if needed (Gravelle & Haskins,1989). Most adolescents face the process of separation-individuation with greatambivalence (Daniels, 1990). They are given new freedoms that carry adultreponsibilities but which also elicit mixed feelings about becoming independent.Adolescents vacillate between the desire for independence and the security affordedby childhood (Daniels, 1990). The security of parents and home is a necessaryprerequisite to healthy separation from parents and hence any threat to that securityis liable to create difficulty in separation for the teenager. Having a parent who isseriously ill disrupts the normal process of breaking away for teenagers, as theirsecurity is shattered and they feel pulled back into the family.Adult children have different developmental tasks to master at their stage inthe life cycle. Most expend time and energy on maintaining a career to assurefinancial and emotional security for later years; most maintain a stable home andbond with another person; they guide their childrens' development and often care foraging family members; and many participate in community life beyond the family(Duvall, 1971). Unlike the teenagers, most adult children have already gainedindependence and hence do not experience insecurity about their future withouttheir parent. They do however have many conflicting responsibilities which inthemselves create a whole different set of issues and concerns when caring for aterminally ill parent.Acknowledging the developmental context for these two groups of childrenthen assists in further explaining the main differences in the experiences of the twogroups. The teenagers often felt trapped and held back in their lives as they wereexpected to assume more responsibilities at home. The fact that they, unlike theadult children, were still dependent on their parents and living at home wasparamount in compounding their feeling of burden. The teenagers struggled with66many paradoxes which were all connected to their fundamental need to establishautonomy and independence from family In contrast, the adult children struggledwith the conflicting demands of their own families, homes and careers with thedemands of caring for a terminally ill parent. The changes that the teenagers had tocontend with in their relationships, roles, home atmosphere, and school were oftenperceived as a hindrance interfering with their developmental drive to get on withtheir own lives. Changes for the adult children, however, centered around providingphysical, emotional, legal and financial support to both parents while also having toattend to their own responsibilities of being young adults. The teenagers searchedfor meaning in the situation as they contemplated their own insecure future, not yetready for complete independence. Unlike the teenagers, having a terminally illparent challenged the adult children to reconsider their values and priorities in life,at a time when developmentally this type of life review is expected (Murray &Zentner, 1985). Developmental stage is undoubtedly a crucial factor influencing theexperiences of the two age groups of children caring for a terminally ill parent.The phenomena of redefining, living day to day and planning for death werenot as useful in in describing the teenagers'experience, as they were for the adultchildrens' experience. The reasons for this are also most clearly understood within adevelopmental context. The teenagers did not redefine their parent as being anydifferent than before the illness because by retaining the old view they could shieldthemselves from the reality that their parent would die, which in turn freed them upto get on with the work of adolescence. As the teenagers focused their energies ontheir own lives and futures they did not describe living from one day to the next,making the most of the time left with their ill parent. Similarly, no matter how closethe parent was to death the teenagers were not fully prepared for the event becausethey had shielded themselves from the reality of the situation and did not have an67adequate enough understanding of the dying process to fully gauge the seriousnessof the situation.Analysis of the data from the teenagers in this study, using theconceptualization of "fading away" as a framework for discussion, has undoubtedlygenerated new information. The analysis verifies of four of the seven phenomena ofthe framework for this population of teenagers, and has added new dimensions to allseven phenomena thereby broadening the understanding of the experiences of livingwith a terminally ill member to include the teenager's experience. The analysis hasalso generated the new phenomenon of shielding which is unique to the teenagers'experience.Shielding Versus DenialSome authors suggest that the protective mechanism of denial comes intoplay when a young person is faced with the impending death of a loved one (Adams& Deveau, 1987; Gravelle & Haskins, 1989; Raphael, 1986). Denial may serve toallow the teenagers to behave as normal teenagers and push away from familyinstead of drawing back into the family circle. Denial, according to Kalish (1985) isan unconscious avoidance to insulate the self from the emotional impact that deathis a reality. Although the teenagers in this study made efforts to protect themselvesfrom fear and the reality of imminent death of their parent, they consciously chose topush thoughts away in order to carry on with their own lives, rather than tounconsciously avoid the issue. The teenagers clearly articulated that they knew thattheir parent was going to die and they just as clearly spoke of not wishing to thinkabout it because it interfered with their daily lives. The term shielding, rather thandenial, is proposed then as a more accurate descriptor of the strategy used byteenagers to cope with the impending death of a parent from cancer. Shielding wasused by the teenagers to alleviate fear about their future, and to allow them to get on68with mastering the developmental tasks of separating from family and moving towardautonomy and independence.The Impact of Advanced Cancer in a Parent on TeenagersThe findings from this study clearly illustrate that living with a parent withadvanced cancer has a profound impact on the day to day lives of teenagers. Itaffects them emotionally and physically as they experience changes in themselves,their relationships, their roles and responsibilities, and their perceptions about theirown futures.Emotional Impact of Advanced CancerResearchers have found that although some caregivers of terminally ill familymembers expressed fear about the future (Krant & Johnston, 1977-78; Welch, 1981;Wright & Dyck, 1984), and of the person dying (Gotay, 1984; Krant & Johnstone,1977-78; Welch, 1981), other emotions such as anxiety, stress, uncertainty, guiltand helplessness (Giaquinta, 1985; Gotay, 1984; Hinde, 1984; Holing, 1983; Krant &Johnston, 1978; Lovejoy, 1986; Rose, 1977; Vachon et al., 1977; Wright & Dyck,1984), were the more commonly experienced emotions as the caregivers felt theburden of providing both the physical and emotional support to their dying familymember.Like these caregivers, the teenagers in this study experienced many differentemotions. They described emotions such as guilt, resentment, sadness, anger,anxiety, and hopelessness. They often found it difficult to comprehend the reasonfor the mood swings, not necessarily attributing them to the fact that their parentwas dying. They perceived themselves to be repressing feelings to minimize thestress at home and yet they also described arguments with siblings and increasingtension at home. They were often resentful of their feelings of obligation to stay athome more and to take on more responsibilities. They felt guilty when not at homeand guilty when not out with friends.69Unlike the caregivers in the other studies, however, fear was the predominantemotion underlying many of the feelings, actions and behaviours of the teenagers.Fear was triggered for the teenagers in two main areas. First, the teenagers becamevery afraid when their ill parent's physical condition visibly deteriorated. Theybecame fearful that their parent would die at any moment and were horrified at thethought of being present at the time of death. Second, the teenagers became scaredwhen they anticipated their own future without their parent. They feared theinsecurity of not having basic needs met such as having a stable home and having atleast one parent there for them. These two areas concerning the profound emotionalimpact that fear had on the experience of these teenagers warrants furtherdiscussion in light of developmental and other theories.Fear of worsening physical symptomsUnlike the adult children in the study by Davies et al. (1990), the teenagers inthis study became fearful and distressed when their parent's external, visiblecondition deteriorated. The teenagers did not appear to have an understanding ofthe process of dying, as being one of alternating periods of deterioration andstabilization, with an overall decline to death. Without this knowledge, the teenagershad no means by which to anticipate the likely time of death, and hence fear of deathcould be triggered at any timeBeing unable to gauge the seriousness of their parent's condition and hencebeing unprepared for the death itself, one would expect the teenagers to be veryshocked when in fact the death did occur. Berman et al. (1988) support thissupposition. Despite having information about the diagnosis, prognosis and changesin their parent's condition, the parent's death came as a shock to the teenagers intheir study. Other authors have also commented on the severity of the shockreactions of teenagers at the death of their parent, even though the death had beenexpected and even though the teenagers knew the prognosis (Gravelle & Haskins,701989; Raphael, 1986). These findings suggest that nurses should not assume thatteenagers have absorbed information they have received about the imminence oftheir parent's death. Nurses should be prepared to support the teenager who mayexperience a severe shock reaction at the actual time of death.Teenagers may also be unprepared for death because of the general lack ofknowledge and open discussion about death and dying which pervades westerncivilization, as death in our society is still a taboo subject (Munley, 1983). Today'syouth has been called a deathless generation as children and adolescents have rarelyexperienced or witnessed the death of a close family member or friend, and hence aremystified by the process of dying (Bernstein, 1983). Most youngsters have twoparents throughout childhood, and the deaths of older relatives can appear asremote incidents, particularly as many children are separated from theirgrandparents by some distance. If there should be a death within the immediatefamily, technical advances are such that the person is more likely to die in hospitalthan die at home and children are often prohibited from full access to visiting inhospital. Death education in the classroom is not yet commonplace and hencechildrens' knowledge and experience with death is limited (Cassini & Rogers, 1989).Several of the teenagers in this study had experienced the death of agrandparent and one teenager had experienced the death of a schoolfriend. None ofthe teenagers, however, felt that these experiences had had much of an emotionalimpact on them, nor did they think that these past experiences with death hadprepared them in any way for the present experience with their parent. It is notsurprising, therefore, that the teenagers in this study experienced fear as they faceddeath close at hand for the first time, with little past experience and little knowledgeabout the process of dying.According to Murray & Zentner (1985), adolescence is a time when attentionis focused on body surface as the development of body image and self concept is71realized. Teenagers are very conscious of creating an image and of manipulatingexternal cues to create a socially-acceptable physical appearance. It is notsurprising therefore that the teenagers focused on the physical cues of illness todetermine the seriousness of their parent's condition. Having more informationabout the significance of certain physical symptoms may well be of benefit to theteenager whose fear is often triggered by such factors.With this understanding about the teenagers' lack of knowledge about thedying process, as evidenced by the intensity of fear each time their parent's physicalcondition worsened, along with the understanding that adolescents tend to focusexternally rather than internally, nurses are directed to ensure teenagers are morefully educated in attempt to alleviate some of that fear.Fear of the future without the parentLooking into the future and facing the reality that their parent was going todie triggered intense fear for the teenagers in this study. The reality shook theirfoundation of security so much so that they adopted certain strategies to preventfacing the inevitability of their parent's death. They shielded themselves by notredefining their parent, by deliberately not thinking about the situation at home, bytaking breaks away from home to be with friends, and by trying to maintain their oldview of their parent, hoping that the parent would recover, and maintaining apositive attitude that recovery could in fact happen. The teenagers often hadquestions about their future which they were afraid to ask because they were afraidto hear the answers. The questions related directly to the security of their home andassurance of the presence of the well parent in their lives. The adult children in theDavies et al. (1990) study, in contrast to the teenagers in this study, did not expressfear of the future in relation to their own security.72Alleviating fear: CommunicationUnderstanding that living with a parent with advanced cancer has a profoundemotional impact upon teenagers, particularly in relation to the fear that thesituation triggers in them, offers guidance to nurses to develop interventionsspecifically geared toward alleviation of that fear. Nurses can assist parents toanticipate questions teenagers may have about security issues for their future, sothat as much reassurance as possible can be given to the teenagers to minimize theirfear about insecurities. Nurses can also provide information to teenagers about theprocess of dying so that they can better gauge the seriousness of the situation andbe more prepared for the death. Nurses can also be available to talk with teenagersor their parents to provide emotional support and counselling in the area of deathand dying.Debate is needed however, as to whether talking about the situation ishelpful or unhelpful in alleviating fear for teenagers living with a parent who is dying.In this study, one strategy used by the teenagers to reduce fear was to shieldthemselves from the reality of death by not thinking or talking about the situationand by repressing feelings. They chose not to talk much with family or friends. Theycommented that friends could not really understand what it was like to have aseriously ill parent and that their friends talked about trivial rather than importantthings in life. They also commented that when they did spend time with friends theywanted to go out and have a good time and forget about things at home for a while.Not talking about the situation for the teenagers may have been adopted as a usefulstrategy to enable them to get on with their own lives.Literature on communication in families caring for a terminally ill memberreveals some controversy about the value of open discussion in families on death anddying. Studies by Krant and Johnston (1977-78), Vachon et al. (1977) and Hinton(1981) all found that limited discussion about death takes place in families. These73researchers conclude that non-discussion makes no difference to the widow'sadjustment after death nor to the anxiety or depression level of the patient.Other studies suggest however, that open communication aids adjustment inthe bereavement phase (Cohen, Dizenhuz, & Winget, 1977), and affects the level ofcloseness in the couple prior to death. Berman et al. (1988) are the only researchersto date who have commented on communication about death in the family withteenagers. They stated that all ten of the teenagers they interviewed had had theopportunity to talk about death within the family prior to the death itself, and sevenout of the ten had spoken with the dying parent before the death. They alsocommented that teenagers turned to siblings and friends for support, although someof the teenagers reported that it was difficult to turn to peers who had notexperienced the loss of a parent. Two of the ten teenagers found it helpful to talk toother adolescents who had lost a parent. Although this study reports interestingfindings, there was no comment on whether talking about death within the familysignificantly assisted the teenagers in reducing fears and anxiety.Data from the current study concur with the findings of the researchers whofound that limited discussion about death takes place in families. Although littlediscussion occurred, the teenagers in this study perceived that the dying parent wasopen and available for discussion about death and dying but the teenagersthemselves chose not to initiate discussion. When their parents initiatedconversation about death and dying, the teenagers tended to reassure their parentthat everything was going to be fine rather than to express their own fears andconcerns. The teenagers often had questions about the future but were hesitantabout having those questions answered. As with the teenagers in the study ofBerman et al. (1988), the teenagers in this study found it difficult to turn to friendsfor support. They found that friends could not understand what it was like to livewith a parent who was dying.74Perhaps, as Berman et al. (1988) suggest, it would be helpful for teenagers tospeak with other teenagers who are going through the same situation as themselves.Two of the teenagers in their study found it helpful when they spoke with otheradolescents who had lost a parent. Five teenagers from the current study suggestedthat getting together with other teenagers in the same situation may be helpful tothem. The younger ones were more hesitant about the usefulness of getting togetherwith other teenagers because of how difficult they found it to open up to others totalk about their feelings. Since data were collected for this study, three of theteenagers have organized a support group for other teenagers who are living with aparent with cancer, so that they can meet to talk and offer support to each other.This action suggests that some teenagers do want to discuss their feelings, fears andconcerns about living with a parent who is dying. Perhaps their need is to talk topeople their own age, who are also going through the experience, and who areunknown to themselves and their family.There is also some evidence to support the value of professional counsellingfor teenagers living with a terminally-ill parent. Rosenheim and Ichilov (1981) arethe only authors who have documented findings of the benefits of a goal-orientedpsychotherapy program for children of fatally-ill parents. They describe a decreasein teenagers' anxiety levels, and an improvement in both their scholasticachievements and their social behaviour at school, as a result of ten to twelveconsecutive weekly meetings with a therapist. The meetings revolved around threemain issues for the teenagers: the perception of the illness and their reaction to it;the factual life situation at home; and the feelings towards the parents and self-concept. Ten out of the twelve teenagers expressed their interest in keeping up withthe meetings.Based on the fact that living with a parent with advanced cancer has aprofound emotional effect on teenagers, and the limited evidence that some teenagers75have expressed an interest in meeting informally with other teenagers or formallywith a therapist, more research is needed to confirm that this need exists and thatinterventions of a formal or informal nature would in fact be helpful in alleviatingsome of the the teenagers' fear, freeing them to get on with their lives.The Physical Impact of Advanced CancerOther studies have documented that caretakers of persons with advancedcancer perceived the situation to have a physical as well as an emotional impact onthem, with complaints of excessive fatigue, unsatisfactory health, and psychosomaticdisturbances (Googe & Varricchio, 1981; Stetz, 1987; Vachon et al., 1977; Welch,1981). The only documentation of negative effects on the teenagers' health of livingwith a parent with cancer was from the clinical observations of Grandstaff (1976).She commented on the fact that teenage boys, unlike girls, showed a continuouspattern of various illnesses since their mother's surgery for breast cancer. Neitherthe spouses nor the children in the study by Davies et al. (1990) complained abouttheir own health suffering as a consequence of caregiving demands. They did,however, resolve to take better care of themselves as a result of realizing their ownvulnerability to death. In contrast, most of the teenagers in this study complained ofa deterioration in their own health since their parent had become so ill. Theycomplained of chronic headaches, fatigue, exhaustion, stomach problems, andunshakable colds, coughs and flus. They also described themselves as becomingmore involved in risk-taking behaviour "to escape from the situation". Thisbehaviour included the use of alcohol and drugs, engaging in unprotectedintercourse and overeating.Of the seven published studies on the impact of cancer on teenagers, onlyWellisch (1979) described acting out behaviour when a parent had cancer. Wellisch(1979) stated that acting out behaviour was the result of subtle role shifts betweenthe teenager and both parents which reintensified emotional contact between76adolescent and parent at a time when the teenager was in the midst of separatingfrom parents. Rebellious, self-destructive behaviour is not uncommon duringadolescence as teenagers test the limits of their feelings of omnipotence and dealwith the anxieties associated with adulthood (Thornburg, 1982). Teenagers who usedrugs and alcohol typically do so to reduce levels of anxiety and fear, and eatingdisorders are often associated with a lack of establishing an identity separate fromparents (Conger & Peterson, 1984). In most cases these behaviours do not persistpast adolescence (Conger & Peterson, 1984).Teenagers who are living with a parent with advanced cancer may be atgreater risk therefore of harming themselves because of their high level of anxietyand fear, and because of the emotional stress of trying to continue the process ofseparating from parents to develop their independence, while at the same time beingpulled back into the family. More research in this area is needed in order to assessthe level of risk for these teenagers who are living with a dying parent, and to assessthe effectiveness of interventions put in place to assist in the relief of anxiety andfear in less self-destructive ways.Conclusions of the StudyThe first conclusion that arises from this study is that living with a parentwith advanced cancer undoubtedly has a profound emotional and physical impactupon the day-to-day lives of teenagers. Fear is the predominant emotion underlyingmany of the actions and behaviours of teenagers living in this type of familysituation.A second conclusion is that unlike adults in the same situation, teenagersshield themselves from the reality of the imminent death of their parent so that theycan continue to pursue the developmental tasks of adolescence, and to get on withtheir own lives. Shielding describes the essence of the experience for teenagers livingwith a terminally ill parent.77The final conclusion is that only four of the seven phenomena described inthe conceptualization of "fading away" (Davies et al., 1990) accurately reflect aspectsof the teenagers' experience. Unlike adults in the same situation, teenagers do notredefine their ill parent in order to adjust to the changing situation at home, nor dothey describe themselves living from day to day or making preparations for theirparent's death. The differences are explainable within a developmental context.Nursing ImplicationsThe findings from this study provide direction for nursing practice andfurther research with families with teenagers who are dealing with advanced cancerin a parent.Implications for Nursing Practice The lack of research to date on the effects on teenagers of living day to daywith a terminally ill parent has left nurses ill-equipped to deal with this particulargroup of individuals. If nurses are, in fact, committed to caring for the whole familyas a unit when one member has cancer, then understanding all family members'responses to such a situation is essential. The findings from Stage I of this researchstudy provide a contribution to understanding the effects on teenagers of living witha terminally ill parent, and hence assist in activating that commitment to wholisticnursing care.Assessing the teenagersThe findings from this study strongly support the fact that teenagers whoseparents are dying must be included in the plan of nursing care. The fact that six outof the eleven teenagers in this study chose to be interviewed in the researcher's officerather than in the family home suggests that nurses should offer the option ofconducting the initial nursing assessment, and possibly follow-up sessions, in aneutral space. Teenagers in the study often expressed how much they repressedtheir feelings at home, how little they talked with other family members and how78they tried to keep the peace. Bearing this in mind, therefore, it is more likely thatteenagers would express their fears and concerns in an environment away fromhome.The personal and situational factors which affect the teenagers' experience,(Appendix D), may be used as a helpful guide when collecting initial assessmentdata. Of particular note are age, sibling order, relationship with the ill parent priorto the illness, family communication and coping style, length of illness, ill parent'sattitude toward death and dying, level of independence encouraged by parents, andamount of care provided by the well parent. These factors appear to influence theseverity of the emotional and physical impact upon the teenagers and hence thedegree to which they are able to get on with their own lives. The nurse might thenuse the categories from the conceptualization of "fading away": burdening, strugglingwith paradox, contending with change and finding meaning, as a guide to building amore complete picture of the teenagers' present situation. The nurse might alsoassess the degree to which the teenager is using the protective mechanism ofshielding as an indicator of how intent the teenager is on continuing with mastery ofthe developmental tasks of adolescence.Assessment of risk is an important role for the nurse caring for teenagerswhose parents are dying. The findings from this study suggest that some teenagersrespond to such a crisis in the family by becoming involved in, or exaggeratingexisting, self-destructive behaviour patterns. An exploration of such types ofbehaviours and an assessment of the level of risk to the teenager must beconsidered. Assistance with developing health-promoting, rather than self-destructive strategies for stress management should be emphasized. Assessment ofthe teenagers' own health status is also important and appropriate referrals made ifany health concerns become evident through the interview.79Teaching and supporting the teenagersThe findings from this study suggest that teenagers living with a parent withadvanced cancer lack an adequate understanding of the process of dying and hencebecome very fearful at their parent's worsening physical symptoms. Because of thislack of knowledge, they cannot discern the seriousness of the situation nor predictwhen their parent is likely to die.Nurses are in a prime position to assess the teenagers' level of knowledgeabout the physical condition of their parent and to then educate the teenagers aboutthe likely course of decline and about what to realistically expect within a certaintime frame. This intervention may help to alleviate some of the extreme fear that theteenagers often experience when their parents' condition worsens. The nurse mayalso learn that the teenagers are fully aware of the situation but have chosen toshield themselves from the reality that their parent is going to die. Understandingthe phenomenon of shielding, the nurse can then respect that the teenagers haveconsciously chosen to protect themselves in order to get on with their own lives.An important role for the nurse is to support the teenagers who wish todiscuss feelings of guilt and resentment, of being used, of being trapped, of blamingthe ill parent for not assisting in their recovery or of feeling their friends do notunderstand. From the data it is clear that few teenagers talk openly with familymembers or friends about the situation at home. Based on the willingness of theteenagers to talk openly in the interviews however, it appears that teenagers may bemore open to talking with individuals who are unknown to them. The nurse whoascertains that the teenager would benefit from this type of support then has anobligation to refer the teenager to an appropriate person for ongoing counselling andsupport.From the findings of this study, there is also preliminary evidence to suggestthat teenagers who are living with a dying parent might benefit from talking with80other teenagers in the same situation. The fact that several teenagers from thisstudy have already instigated a peer support group implies the need for this type ofintervention. Nurses could be of assistance to teenagers who have expressed aninterest in setting up such a group by: 1) helping to find a suitable, neutral space formeetings; 2) securing funding for posters, advertising, photocopying etc.; 3)suggesting speakers who could educate the teenagers in such areas as death, dying,grief, loss, bereavement, and anxiety management; 4) being available as a resourcefor the group organizers; 5) informing other health care professionals in hospitalsand the community, school counsellors, and community agencies about the group.Teaching and supporting the arentsThe findings from this study suggest that little communication goes on infamilies with teenagers about death and dying when a parent is terminally ill. Theteenagers often find it difficult to talk about the situation at home and/or choose notto do so. The nurse has a role in teaching parents therefore about commonresponses of teenagers in this type of home situation because the parents may beunaware of how the teenagers are feeling. Parents should be encouraged to supportthe teenagers to carry on with their usual activities, and to refrain from expecting toomuch of the teenagers in terms of responsibilities at home, particularly in relation toproviding physical care to the ill parent. The more the teenagers can be encouragedto pursue the normal tasks of adolescence the less likely they will feel burdened andheld back in their own lives.Parents should be encouraged to anticipate the teenagers' questions aboutthe future in terms of security such as: Where will we live? Who will be there withme after the death? Will you remarry? The teenagers require much reassuranceduring this period particularly from the well parent that they will still be providedwith some security and a home after the ill parent dies.81Many of the teenagers expressed a longing to become closer to the ill parentbut they did not know how to initiate that type of change in their relationship withtheir parent. In this type of situation, where the teenager has expressed the desire toget closer, the nurse could help the ill parents to identify some strategies whichmight enhance closeness between themselves and their teenage children.Teaching the communityWith the incidence of cancer increasing annually, the numbers of teenagersliving with a parent with advanced cancer can only increase. Health careprofessionals, school counsellors, social workers, police officers and othercommunity workers will therefore encounter more and more of these teenagers intheir daily practice. The study findings emphasize the profound impact that livingwith a terminally ill parent has on teenagers. Once nurses have this knowledge,therefore, they should take on the responsibility of educating professionals in thecommunity, to enhance their knowledge base and offer them some guidance fordesigning helpful interventions for these teenagers.This study provides direction to nurses as they care for teenagers who areliving with a terminally ill parent. The study is however just a beginningcontribution to this area of family nursing research which still requires much moreexploration.Implications for Nursing Research Data analysis of Stage 1 of this project has been useful in demonstratingthose phenomena of the conceptualization of "fading away" which reflect theexperience of teenagers living with a terminally ill parent and those phenomenawhich do not. The study has also generated the new phenomenon of shielding hencebroadening the application of the conceptualization of "fading away" to otherpopulations or conditions. The analysis of Stage II of the project will serve to refine82this existing theory further as the experiences of all members of families withteenagers will be described in relation to "fading away".The findings from this study raises several questions for future researchwhich would help to further build theory in this area where so little research has sofar been conducted:1) What are the differences between the experiences of male versus femaleteenagers who are living with a parent with advanced cancer?2) What effect does gender of the parent with advanced cancer have on theexperience of teenagers?3) What are the differences between the experiences of teenagers of varyingages: 13-15 year olds; 16-17 year olds; 18-19 year olds?4) How does length of illness of the parent with advanced cancer affect theexperience of teenagers?5) What are the differences in the experiences of teenagers living with a singleparent with advanced cancer versus teenagers living with two parents?6) How does ethnicity affect the experience of teenagers living with a parent withadvanced cancer?The findings of this study also imply that further research is needed to verifythe phenomenon of shielding as a strategy unique to teenagers living in this type offamily situation. Teenagers may in fact use this coping strategy in other crisissituations such as impending divorce or separation of parents, illness in a sibling orclose friend, or illness in themselves. More research is needed therefore to furtherdelineate the properties and dimensions of this phenomenon.Research is also needed to examine the effect of interventions with teenagersduring the period prior to the death of a parent, first, on physical and emotionalparameters; second, on grieving after the death of their parent; and third on thelong term effects on adults who have lost a parent during adolescence. Evaluation83studies of interventions such as individual counselling or peer support groups wouldbe helpful for nurses when proposing to promote such interventions.SummaryThis chapter discussed the findings of Stage I of this research project in lightof other research and theoretical perspectives. The research question of whether theconceptualization of "fading away' reflects the experience of teenagers living with aparent with advanced cancer, as it does for adult children, was addressed Analysisof the teenager data, within a developmental context, added new insight to thephenomena of the conceptualization of "fading away" and generated a newphenomenon of shielding which was unique to the teenager's experience. Fear ofworsening physical symptoms and fear of the future without the parent werediscussed as major components of the emotional impact on the teenagers of livingwith a parent with advanced cancer. Finally, the physical impact of the situationand the potential risks to the teenager were highlighted prior to discussion of theimplications of the findings from this study for nursing practice and furtherresearch.84BibliographyAdam, K., Lorenz, J., Harper, D., & Steiner, D. (1982). Early parental loss andsuicidal ideation. 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Cancer Nursing October 371-374.89Appendix AINFORMATION LETTER FOR FAMILY MEMBERSDear^My name is JANIE BROWN. I am a Registered Nurse and a student in theMasters of Science in Nursing program at the University of British Columbia.I have worked as a nurse for ten years caring for individuals with cancer andtheir families I believe that we as nurses could provide much better care to familiesliving with cancer in their midst, if we knew more about the experience from thefamily members themselves.My thesis supervisor, Dr. Betty Davies and her colleagues have completed astudy with families in which one member has cancer. Based on the informationprovided by the families the researchers developed a description of what theexperience is like for families. However, none of the families which were interviewedincluded families with teenagers, so it is not clear whether the description applies tothis type of family I would therefore like to talk with families with teenagers in orderto find out what it is like for them living with a family member who has cancer.For this reason, I would like to set up an appointment with you, and theperson who is most involved with your care (your spouse, partner, a close friend, oranother relative) and with your teenage child/children. I would first discuss thestudy with you and answer any questions you may have. If you all agree toparticipate I would be asking you to be interviewed on one to two occasions for atotal time commitment of about two hours for each person.At the start of the first interview I would obtain a written consent from eachperson. I would then like to interview each family member separately for about 30-60 minutes each and finally talk with the whole family for a final 30 minutes or so.If necessary a second visit will be arranged to clarify the information received in thefirst interviews.You are under no obligation to participate in this study and are free towithdraw from it at any time, without jeopardizing care in any way. If you areinterested in learning more about the study and/or wish to participate please informthe nurse who gave you this letter and she or he will contact me. Thank you for yourinterest and I look forward to discussing this project with you.Sincerely,Janie Brown. RN., M.A.90Appendix BCONSENT TO PARTICIPATEPROJECT TITLE: The Experience of Families with Teenagers Caring for an AdultFamily Member with Advanced Cancer at HomeCO-INVESTIGATOR: Janie Brown, R.N., M.A.Graduate Student, Masters ProgramSchool of Nursing,University of British ColumbiaTel: 879-3972PRINCIPLEINVESTIGATORDr. E. DaviesAssociate ProfessorSchool of NursingUniversity of British ColumbiaTel: 228-7456PURPOSE OF THE STUDYThe intent of this study is to describe the experience of families with teenagers whoare caring for a parent with cancer at home. It will verify whether the descriptionproposed by Dr. Davies and colleagues of the experience of families who are caringfor a parent with cancer at home actually reflects the experience of families withteenagers in the same situation. There is a need to hear directly from families livingwith cancer if nurses are to provide high quality nursing to these families^ , agree to participate in the research studydescribed above. I have had the study explained to me and I understand that:a) I may refuse to comment or answer any question at any time;b) I may withdraw from the study at any time without a negative effect on care;c) I am free to stop the interview at any time;I expect that:a) Although the length of the interview will depend on my tolerance, the averagelength of the interview(s) will be 30-60 minutes;b) I will be interviewed in my home, (at most, twice with my family and twice alone);c) The researcher will be observing me during the interviews;d) The interviews will be audiotaped and transcribed and the tapes destroyed aftercompletion of the study;e) The tapes will be listened to only by the researcher and faculty advisors;fl The transcriptions will be kept in a locked drawer and destroyed within threeyears of completion of the study;g) All transcripts will be identified only by code number; my name or the name ofother family members will not appear in any research report, unpublished orpublished;h) The content of my discussions with the researcher will be held in strictconfidence by the researcher and faculty advisors.91I have been given the opportunity to ask whatever questions I desire of theresearcher and have had all such questions answered to my satisfaction. I realize Ican ask for additional information at any time. I will be given a copy of this consentform, and I will be given an opportunity to see a summary of the final report.Patient^ WitnessSpouse/Partner/Primary CaregiverTeenage Son/Daughter^ Parent for TeenagerTeenage Son/Daughter^ Parent for TeenagerDate92Appendix CINTERVIEW GUIDELINESWe believe that when a person is ill, like^ there is an effect on the wholefamily. We are interested in learning more about how families manage these kinds ofsituations as a way of planning for better care. The questions I am about to ask youarose from previous studies of others who were in similar situations to yourselves.These studies found that patients and families seemed to be going through a seriesof changes and reactions. Family members often had to deal with a number ofthings such as managing confusion and uncertainty, feeling a burden and so on.What I would like to do in our interviews is to ask you some questions about howyou view these various changes and reactions.Please let me know if you get tired or need a break from the interview. Also, ifthere are any questions which you do not wish to answer let me know and I willmove to the next question.1. I would like to begin by asking you to describe how things have been for yourfamily since^became ill?Probes:a. What has it been like for all of you caring forat home?b. What kinds of things stick out in your mindabout the experience?2. (Redefining) When someone in a family has become ill and they're not able tofunction in their usual way, people begin to view them in a different way. Insome ways they are still the same and in other ways they are different. Howhas this been for you? What things can you identify from your own experiencethat fits with this idea?3. (Burdening) When someone is ill that person is often unable to do what they usedto do so other members take on their work plus the responsibility of caring forthe ill person. When this happens in families, people often feel differently.Some people feel overworked and others don't, sometimes people protect eachother or feel they're holding others back. How has this been for you?4. (Contending with change) When someone in the family is ill, people can't alwaysdo their usual jobs, things are done differently or people see things differently.Household tasks are handled differently, usual routines change. How has youroutlook changed? What other changes have you had to deal with? How hasyour health been?935. (Struggling with paradox) In situations of caring for someone who is very ill,people often feel like they are being pulled in two directions at the same time,for example, wanting to fight and wanting to give up, wanting to know answersand yet not wanting to ask the questions. What has been your experience?Would you agree that this occurs? How else might you describe this reaction?6. (Searching for meaning) When someone in a family is very ill, people often try tofind some meaning in the experience, they try to learn from what is happeningto them. Has this been the case for you? What has helped you deal with thissituation?7. (Living day-to-day, preparing for death) Some of the other families reported thatthere came a point when they realized that the patient was not going to getbetter, they then tried to make the best of things, to make the most of the time.Others spent more time with the patient, and put things in order, for example,possessions, wills, household information and so on. What has been yourexperience?8. (Neutral zone) When someone in a family is very ill, people often feel like thateverything is up in the air, on hold, they feel like they are in limbo, at astandstill, confused. in chaos, where everything seems up in the air. Has thisbeen true for you? How would you describe your experience, your reactions?9. (New beginnings) Some people have told us that there came a point when theyrealized that given the situation there were certain things that they wished toaccomplish and that they could not let the situation overwhelm them. Doesthis fit for your experience? How would you describe your experience?10. (Ending). When someone is ill for a long time, people are always hopeful thatthe ill person will recover. Sometimes, there comes a point when people realizethat the ill person will not recover. Would you agree with this? Was there apoint like that for you? Would you describe your experience?11. (Transition, fading-away) We were trying to find a word or phrase that wouldhelp us describe this process of dealing with a family member who is not goingto recover. In our previous discussions with families and patients theirdescriptions of the patient seemed to suggest the person was losing abilitiesand that this made them realize that the person was not going to recover. Oneperson used the words fading-away. We used the same phrase to describe thistransition. How does this fit with your experience? How would you describe itdifferently? What other words would you use? Is it the person, or life as itwas, or is it hope which fades?9412. (Past experience) Most of the people we talked to discussed their pastexperiences with illness, death, or other major problems, in their lives andindicated that these all impact on how they handled this situation. Is this truefor you? In what ways have your past experiences affected how you arehandling this situation.13. (Style) In dealing with the whole situation, did you find that you recognizedcertain patterns of behaviour that you and your family has used in the past todeal with other stressful situations? In dealing with this situation have youused similar patterns or have you had to find new ways of dealing with thissituation? How has it been for the rest of the family?14. What would you like to add to this interview? Have I missed out anything thatyou would like to tell me about your experience or that would help usunderstand this situation better?95Appendix DDecision Trail of Conceptual AnalysisMAJOR^INITIALCATEGORIES^CATEGORIES^INITIAL CODESSHIELDINGINTERVENING Personal^- genderVARIABLES^Factors - age- sibling order- personalitySituational^- relationship with ill parent prior toFactors illness- length of illness- family communication- family coping style- ill parent's attitude toward death/dying- level of independence encouraged byparents- amount of care provided by well parent- location of careACTION/^Encountering^- Feeling trappedINTERACTIONAL Hindrance - Resenting more responsibilitiesSTRATEGIES - Feeling guilty if not home- Feeling guilty if not with friends- Dwelling on parent's illness- Unable to move out- Longing to be closer- Unable to get closer- Feeling used- Keeping the peace- Lacking concentration at school- Not talking about the situation- Perceiving friends do not understand- Shifting dependency roles parent/childBeing There^- Reassuring parent- Assisting with physical care- Spending more time with family- Empathizing with ill parent- Checking-in- Taking on responsibilty for family afterdeath96Riding the^- Repressing feelingsEmotional - Emotional outburstsRoller-Coaster^- Changing moods- Reacting to physical symptoms- Fearing parent will die- Fearing being alone- Arguing with siblings- Hoping parent will recover- Blaming parent for not assisting inrecoveryGetting-OnCONSEQUENCES- Pushing thoughts away- Refusing to acknowledge seriousness ofillness- Choosing to be with friends- Engaging in self-destructive behaviours- Taking breaks- Questioning the future- Not wanting answers to questions- Feeling sense of urgency- Wishing it would be over- Wishing parent would get better- Making commitment to own future- Searching for career directions- Growing up fast- Outgrowing friends- Being fatalistic- Taking life more seriously- Feeling self stronger- Feeling closer to family- Confronting own health issues- Maintaining positive attitudeAppendix EFitting Initial Codes into Conceptualization of Fading Away97THE ENDINGRedefiningBurdening- Reacting to physical symptoms- Fearing parent will die- Fearing being alone- Refusing to acknowledgeseriousness of illness- Fearing being alone- Feeling used- Engaging in risk-takingbehaviours- Feeling trapped- Resenting more responsibilities- Feeling guilty if not home- Feeling guilty if not withfriends- Dwelling on parent's illness- Unable to move out- Longing to be closer- Feeling used- Keeping the peace- Lacking concentration at school- Not talking about the situation- Perceiving friends do notunderstand- Shifting dependency roles parent/childNEUTRAL ZONEStruggling^- Wishing it would be overwith^- Hoping parent will recoverParadox - Feeling guilty if not home- Feeling guilty if not withfriends- Choosing to be with friends- Spending more time withfamily- Taking breaks- Pushing thoughts away- Refusing to acknowledgeseriousness of illness- Dwelling on parent's illness- Empathizing with ill parent- Reassuring parent- Assisting with physical care- Feeling used- Longing to be closer- Unable to get closer- Not talking about the situation- Having questions about future- Not wanting answers to questionsContending^- Shifting dependency roleswith^parent/childChange - Feeling closer to family- Spending more time with family- Arguing with siblings- Taking on reesponsibility forfamily after death- Assisting with physical care- Checking-in- Growing up fast- Outgrowing friends- Perceiving friends do notunderstand- Taking life more seriously- Changing moods- Repressing feelings- Emotional outbursts- Feeling self stronger- Contending with own health issues- Lacking concentration at school- Feeling sense of urgencySearching^- Having questions about the futurefor^- Fearing being aloneMeaning^- Fearing the future- Making commitment to own future- Maintaining positive attitude- Being fatalistic- Engaging in self-destructivebehaviours- Feeling a sense of urgency- Hoping parent will recover- Blaming parent for not assistingin recovery- Searching for career directions98THE BEGINNINGLiving Dayto Day- Making commitment to own future- Pushing thoughts away- Getting-on- Feeling sense of urgency99Preparing^- Fearing parent will diefor death - Not talking about thesituation- Reacting to physical symptoms- Hoping parent will recover- Refusing to acknowledgeseriousness of illness- Pushing thoughts away- Wishing it was over


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