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Partners in grief : couples' narratives of the transition from pediatric paliative care into bereavement Paley, Nicole 2008

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PARTNERS IN GRIEF:COUPLES' NARRATIVES OF THE TRANSITION FROM PEDIATRIC PALIATIVECARE INTO BEREAVEMENTbyNICOLE PALEYB.A., The University of British Columbia, 2005A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THEREQUIREMENTS FOR THE DEGREE OFMASTER OF ARTSinTHE FACULTY OF GRADUATE STUDIES(Counselling Psychology)THE UNIVERSITY OF BRITISH COLUMBIA(Vancouver)FEBRUARY 2008? Nicole Paley, 200811AbstractA deep interest in how relationships, specifically romantic partnerships, cope withand survive tragedies, guides this research. My research question was : What are thenarratives of intact bereaved couples whose children have died after receiving palliative carefor a life-limiting illness? Five couples were interviewed who had lost their children rangingin age from 1-14 years of age. This loss occurred between 2 to 9 years previous to this study.The purpose of this narrative research study was to better understand the ways inwhich intact marital partners/couples coped together with the stress and grief involved inhaving a child with a life-limiting condition and then having that child die after receivingpalliative care. A secondary aim was to bring forth their voices through their narratives as ameans to address the stigmatization and isolation often experienced by those who arebereaved, especially those who have lost a child. This project informs professionals who areworking with couples undergoing the struggle of a child's critical illness or who are workingwith bereaved couples.Each couples' narrative account was written in story format. In addition to the richinformation gained from reading the holistic stories, 5 themes emerged through a categoricalcontent analysis which were: 1) the last thing you worry about are issues about us, 2)accommodating one another's coping, 3) recognizing sources of support and limitations, 4)two souls against the world, and 5) we have a common bond: lessons and legacy of the child.Table of ContentsAbstract  iiTable of Contents   iiiAcknowledgments viDedication  viiCHAPTER ONE Introduction   1Introduction  1Statement of Problem  2Purpose of Study and Research Question  3Conceptual and Theoretical Frameworks  4CHAPTER TWO Current Research Knowledge   12Introduction  12Pediatric Palliative Care  12Studies of Impact of Child Loss on Parents  15Family Systems and Grief   18Coping in Marital Dyads  19Bereaved Couples  20Summary of Literature  24CHAPTER THREE Method   27Introduction  27Participants  28Procedures  29Transcription  30ivNarrative Analysis  31Representation  32Ethical Issues  33Criteria for Trustworthiness  34Researcher's Subjectivity  36CHAPTER FOUR Stories and Themes  39Introduction  39Christine and Don  41Jack and Lindsay  48Annie and Ralph  54Gail and Andrew  59Sumeet and Rana  66Themes  72CHAPTER FIVE Discussion.. . . 84Introduction  84Relating Themes to Literature  85Partners in Grief: Implications for Health Care Providers  95Partners in Grief: Implications for Counselling Psychology Practice  97Implications for Future Research  101Conclusion  103References  105Appendix A: Ethics Approval  111Appendix B: Letter of Invitation  112VAppendix C: Screening Interview  113Appendix D: Consent Form  115Appendix E: Interview Guide  118Appendix F: Resource List  120viAcknowledgementsMy deepest gratitude goes to my mentor, Susan Cadell. She became a role model forme when we met the year I took her course in psychosocial oncology. The work she wasdoing inspired me; learning about posttraumatic growth in relation to bereavement from her,helped me grow and also confirmed what I wanted my research and career focus to be. I feelblessed to get to work by her side and continue to learn from her. She has given me greatconfidence which is one of the biggest gifts. I also need to give huge thanks to MarlaBuchanan. As my thesis supervisor, she enthusiastically guided and supported me throughoutthis process. I came into it feeling nervous and intimidated by the task but she made it seemdoable and I think for that reason, it was doable. I am also indebted to Marla for herincredibly thorough editing. I feel lucky to have such a warm and dedicated supervisor.Thank you to Mary Westwood for his passion and for reminding me of my liveliness, and toPaule McNicoll for providing feedback on my thesis. Of course, I am extremely blessed tohave met and heard the stories from the couples who participated in this research with me. Iobviously could not have done this without them. Their stories moved me and gave me thespirit I needed to carry out this project.viiDedicationDear Lynn,Why did you have to die? That question will never be answered . I never realizedhow strange, sad, and full of suffering life could be until you died at the age of 25. I was only18 at the time and slowly coming into myselfbut what sticks out the most is how you loved. It was a full love; being a very lucky recipientof it, I know that it was the type of love that fills up every inch of a space and made me feellike I had scored the best sister. It was you who provided the most invaluable lessons to mewith your honest way of being, your expressiveness, your creativity, your vibrancy, and thatbeautiful mix you had of strength and vulnerability.There have been days where my grief has felt so broad and heavy that it is as though Ihave the steepest mountain to climb in order to find relief. I've wondered : How am I going topersevere? But when I've looked up, you're there perched on top of the mountain smilingand cheering me on, challenging me to dig deep into my pain and find my inner strength tokeep moving. Because, of course, as people say, you can't go around emotions, you have togo through them. Your encouragement and aliveness is helping me do the work I need to doto realize my dreams. Knowing that you're there with me through all of this has allowed meto find the positives in living without you alive and has helped me grow and mature.It is your death that sparked my interest in researching how families and individualsdeal with a young person's death but it is how you lived that gives me the energy to carry outthis work.Dear Dad and Mom,You two are my best friends and words could never capture the deep love andappreciation I have for both of you. Our connection is what keeps me going. This work isjust as much yours as it is mine. I am so sorry that we lost Lynn. Let's make sure to alwayskeep the memory of her alive.Dear Tommy,Your determination has always inspired me but more than that, I will be forevergrateful that I have a brother who values family as much as you do. You are a kind, generoussoul and I love you very much.1CHAPTER ONEIntroductionWhen a child does not survive a life-limiting illness the silence of shock and sadnessis loud. It is as though the community is protesting and saying in their silence that childrenshould not die. Unfortunately, the deafening silence can make the voices and cries for help ofgrieving families unheard and their suffering worse (Rallison & Moules, 2004). When menand women become mothers and fathers, their status change and their new identities androles are supported and celebrated by friends and family. Practical and emotional support isoffered with ease. The transition from mother and father to bereaved mother and father isequally powerful, yet this traumatic circumstance is often met with a lack of social support?making the sense of loss more pronounced and more challenging to cope with (Cadell, 2005;Neimeyer, Prigerson, & Davies, 2002). In fact, for parents whose son or daughter dies, thewithdrawal of support from hospital staff is often considered a profound secondary loss(Contro, Larson, Scofield, Sourkes, & Cohen, 2004). After the funerals and memorials,friends, neighbors, co-workers, and health professionals move back into their normal livesleaving the bereaved alone with their pain (Cadell; Contro et al.).As Riches and Dawson (1996a) claim, there seems to be a border between those whoare bereaved and non-bereaved. Although the two groups live amongst each other, there is adeeply felt divide. The majority of studies that have investigated the impact of grief onbereaved couples have reported that this divide exists between husbands and wives as well(Hagemeister & Rosenblatt, 1997; Kamm & Vandenberg, 2001; Riches & Dawson, 1996a).Gilbert (1996) explains that it is common for family members to experience contrastingstyles when dealing with grief and this is especially true for husbands and wives. These2different grief reactions, evidently, can result in frustration, disharmony, and sometimesseparation for bereaved couples (Farnsworth & Allen, 1996; Schwab, 1992). This appears tobe the dominant story in the research literature.Statement of ProblemWe hear of relationship strain and separation but know little about the lives ofbereaved couples who remain together following the death of their child. The reality is thatmost bereaved couples do stay intact after a child's death, and some report that the marriagehas strengthened and grown (Lehman, Lang, Wortman, & Sorenson, 1989; Schwab, 1998).Perhaps another reason why we do not know more about couples who have survived a child'sdeath is because the research in this area is mostly about bereaved mothers, leaving thestories and experiences of bereaved fathers unknown or even misunderstood (Davies,Gudmundsdottir, Worden, Orloff, Sumner, & Brenner, 2004; Gilbert & Smart, 1992).Studies that have gathered data from bereaved couples have generally been quantitative indesign and have focused on and reported mainly negative outcomes (Kamm & Vandenberg,2001; Lehman, Lang, Wortman, & Sorenson; Schwab, 1992). Although these studies havemade a substantial contribution, we need to know more about the meaning of bereavementprocesses and positive as well as negative experiences.Another deficiency in the literature, and one that I will attempt to address, is that thestories of intact bereaved couples who have transitioned from pediatric palliative care (thecare given to patients whose disease is not responding to curative treatment) to bereavementhas never been explored. Ethical and medical aspects of treating dying children are the mainfoci in the pediatric palliative care research literature. Psychosocial research has typicallyconcentrated on individuals (the patients, siblings, or individual parents) or the family but not3on the dyadic parental unit. Additionally, most of the literature that attends to the psycho-social components of palliative care for children is conceptual rather than empirical. Toaddress this dearth in the literature, I have completed a qualitative study that used narrativemethods to document the stories of bereaved couples whose child died from an illness.In addition to reviewing the literature, my personal experiences working with familieson a pediatric cancer ward have led me to believe that these parents do not get enoughsupport. The focus of health professionals is on the sick child despite the fact that family-centered care is considered the standard for pediatric practice in North America (Gilmer,2002: Himelstein, 2006). Additionally, parents in this situation are not only dealing withsystems outside of the family but are also often dealing with being part of a spousalsubsystem The spousal relationship may be a place of comfort and support or difficultyduring a child's illness and after the child dies.Purpose of Study and Research QuestionThe purpose of this narrative study was to document, describe, and understand thelived experiences of couples who have stayed together throughout their child's illness anddeath, and are now on the journey of bereavement. The participants for this study wererecruited by Canuck Place, the Vancouver children's hospice. The research question for thisstudy was: What are the narratives of intact bereaved couples whose children have died afterreceiving palliative care for a life-limiting illness? Other questions I explored in theinterviews were: How do couples prepare for the death of their child as a team? What dotheir individual and joint processes look like? How do they accommodate one another'scoping? How might the couple's bond tighten and their relationship grow in the aftermath oftheir child's death due to an illness? How might they construct meaning together before and4during bereavement? Through this study, I present a portrait of bereaved couples who haveremained intact. This was not a study about marital satisfaction, although that was a part ofsome of the participants' stories. The interviews were analyzed for expressions ofposttraumatic growth (PTG) and meaning-making and this is discussed in the last narrativewhich is my story as the researcher.It is hoped that this research study will further our understanding of issues related tocouples' loss of their child . The results can be used to inform the psychosocial practices ofhealth care providers (doctors, nurses, social workers, and psychologists) on the importanceof giving attention and support to marital partners/couples whose children are dying from anillness. For grief and family counsellors working with bereaved couples, learning whatfacilitates successful coping and how meaning is made in these relationships would also bevery useful. Hopefully this exploratory research will generate more studies in this area andlead to a lessening of the stigma too often placed on grieving parents in the aftermath of achild's death. Finally, it could be helpful for couples who are anticipating their child's deathduring the palliative care stage of an illness, or who are newly bereaved, to have others'stories to turn to as a means of comfort or guidance.Conceptual and Theoretical FrameworksThe major conceptual frameworks on which my study was based were family systemstheory and relationship-focused coping theory. I will discuss both of these theories briefly asthey apply to studying how couples cope. Prior to that discussion, I introduce the ideas andtheories about grief that informed me as I collected and analyzed data for the research. Thegrief theories I drew from all fit into the social constructionist paradigm and thus nicely fitwith the narrative methodology used.5Grief TheoriesThe stories of bereaved parents documented by researchers reveal a common themeof isolation. This is not surprising considering the North American norm of avoiding deathand grief in social discourse (Riches & Dawson, 1996). In addition to the anxiety-provokingnature of discussing these realities, possibly what perpetuates this pattern of avoidance is thatgrief theorists, for a long time, have argued that what is best for the bereaved is to graduallydetach themselves from the dead and resume their routines as though nothing happened(Stroebe & Schut, 1999). Thus when a friend of a bereaved parent offers the platitude of"time will heal," and then changes the topic, they are simply echoing this belief aboutadaptive grieving. Indeed, this is the goal of what we know as grief work?to process theemotions and thoughts that accompany bereavement and then regroup. In the last couple ofdecades, a revolution has begun in the field of grief and loss. In response to research that hasshown that people usually do not put an end to their relationship with the deceased, nor wantto, theorists have passionately disputed the grief work hypothesis (Stroebe & Schut).Before I discuss the various theories of grief, I want to share some definitions ofmeaning-making . Attig (2001) distinguishes meaning-making from meaning-finding byemphasizing that meaning-making is about the process of creating meaning; it is a consciousactivity that individuals engage in throughout life, especially during significant transitions.Conversely, Attig explains meaning-finding as a passive search for meaning. Neimeyer,Prigerson, and Davies (2002) and Neimeyer (1998) contribute to this discourse adding thatmeaning-making is not solely a private activity done in the internal world of the bereavedindividual but as Neimeyer, Prigerson, and Davies state "at the juncture of self and system"(p. 239). As the bereaved individual begins the journey of making-meaning of their loved6one's death by reconstructing views of self, others, and the world, they involve others tovalidate their ideas and feelings and to assist them in forming meaning after such atremendous loss (Neimeyer, Prigerson, & Davies).You will notice that the theories I describe below persuasively argue that grief isabout processing, rather than reaching an endpoint. Given that my research will attempt tounderstand meaning-making in bereaved couples, it is also helpful to discuss meaning-making in the context of families. Nadeau (1998) used Reiss's model of family meaning-making in her research on families constructing meaning together after a loved one dies.Nadeau discussed Reiss's terms family paradigm and crisis construct . Family paradigm isdefined as the family's main organizer and "consists of the family's assumptions, constructs,fantasies, and sets or expectations" (Nadeau, p. 23). The crisis construct is a concept closelyrelated to families in bereavement and is described in the following way:Serious family crisis is likely to occur in response to two universal categories ofhuman suffering: prolonged illness and death. The family in acute crisis isdisorganized and not experiencing themselves as a unit, but rather as a collection ofindividuals. The path to recovery or reorganization of the family begins with thecrisis construct, a new form of construct for the family which realizes?at somelevel?that it is in crisis and begins to develop some shared concept of that crisis(Reiss as cited in Nadeau, p. 24).It is emphasized in Nadeau's writing that Reiss's crisis construct is not as cognitively-oriented as the term might imply but about the family system's deep emotional responses that"are organized as much by fantasy and longing as by observations and rational inference" (p.392).7Klass' (2001) definition of grief for bereaved parents reflects the new ideas being putforth: "the purpose of grief has been defined for most of the 20thcentury as a break in anattachment. In fact, however, the members of bereaved parents do not detach from theirchild" (p.78). Instead of severing their attachment to the deceased, as some theories suggest,the bereft's relationship with the deceased child usually goes through a transformation wherethe child remains an important feature in their life (Klass). Walter (1996) agrees that thepurpose of grief for the bereaved is to "integrate the memory of the dead into their ongoinglives" (p.7). Walter rejects the notion that the goal of grief is to reach a place of livingcomfortably without the deceased. Walter proposes a post-modern model that embraces thefact that survivors typically want to talk to people about the deceased. Walter claims peoplehave a never-ending need to make sense of themselves and others in their continuallychanging life narrative. Bereavement, in Walter's model, is an unlimited and reflexiveconversation with self and others and allows for processing of the death and construction of anew story that both involves and does not involve the deceased.Stroebe and Schut's (1999) Dual Process Model (DPM) of coping with bereavementconceptualizes grief as a dynamic process that involves two types of coping: loss-orientedcoping and restoration-oriented coping. The DPM suggests that individuals typicallyoscillate between ruminating over the loss and being concerned with re-establishing theirnormal lifestyle. This model, rare because it describes the process of coping, contends thatthe bereaved cycle between confrontation and avoidance and that this is adaptive. On onehand the individual is realizing the loss and on the other, as Stroebe and Schut explain, theyare "taking time off from grieving, as when watching an engrossing tv program, reading,8talking with friends about some other topic, or sleeping" (p. 9). In this framework, copingwith the loss is embedded into everyday life and does not have a timeline.As Balk (2004) contends, grief is a "dangerous opportunity" offering both thepossibility of growth and development as well as "harm and dissolution" (p. 367). As theGrief to Personal Growth (GPG) theory states, rumination about the loss can indirectly leadto growth (Hogan & Schmidt, 2002). The GPG model was developed using bereavedparents. It suggests that these individuals transition from the despair of grief, which involvesintrusive thoughts and ruminating about the loss of the child's life, to avoidance and, finally,reaching out for social support. Hogan and Schmidt consider this to be the turning point forthe bereaved. Once the individual begins opening up to others about their emotional andpsychological experience of grief, a transformation of self commences and growth can occur.Like the DPM, this model challenges the grief work hypothesis in that it disagrees with thenotion that people want to, or actually experience, a return to normal life, as though the deathwas an isolated event and that the grief can be dealt with and moved past.Family Systems TheoryFamily systems theory is a theoretical orientation that was useful in framing my studyas it emphasizes the relational environment, how that environment influences us and how weinfluence it. Goldberg and Goldberg (2004) describe family systems theory, which wasadvanced by Murray Bowen, as one that "emphasizes the family as an emotional unit ornetwork of interlocking relationships best understood from a historical or transgenerationalperspective" (p. 508). Several of the concepts and viewpoints of family systems theory haverelevance in studying how married couples interactively cope with a child dying and griefthat follows?namely, marital quid pro quo, roles, rules, subsystems, and boundaries .9Men and women play certain roles in the family and their role descriptions mightdepend on theirmarital quid pro quo : An initial agreement between husband and wiferegarding how they will define themselves in relation to the other in their marital relationship(Goldberg & Goldberg, 2004). Roles are the expectations assigned to each position in thefamily. Rules, in family systems terminology, can be stated explicitly or implicitly and they"characterize, regulate, and help to stabilize how-and how well-families function as a unit"(Goldberg & Goldberg, p. 74). For instance, a family might have an unstated rule that cryingis a sign of weakness. Family systems are made up of subsystems, one being the spousalsubsystem . For bereaved couples who have multiple children, their spousal subsystem hasthe largest influence on the family; it teaches children about intimacy, commitment, andaccommodating other people's needs (Goldberg & Goldberg). Essentially the husband-wifedyad has the power of holding the family together or making it disintegrate.Also relevant to a study about bereaved couples is the family systems notion ofboundaries . A boundary is "an invisible line of demarcation that separates an individual, asub-system, or a system from outside surroundings" (Goldberg & Goldberg, 2004, p. 85).Boundaries determine how much information can flow between systems and also who isconsidered a member of a particular system. Boundaries, determined by family rules, can beclear, blurry, or rigid; they can be open?allowing for an easy flow of information out andin?or closed. For example, a bereaved couple with clear and open boundaries might lethelpful friends and family members prepare their child's funeral and can easily let thesesupportive people know that they do want not visitors at the house for awhile. Conversely, abereaved couple with rigid boundaries might have difficulty letting others, and one another,"in." Perhaps they each learned in their families-of-origin that sharing one's emotions can10make you vulnerable. The ability to comfortably express one's emotions is important both inthe grief process theories and family systems (Traylor, Hayslip, Kaminski, & York, 2003).Family systems theorists view families as talented at maintaining homeostasis.Goldberg and Goldberg (2004) describe it as "a dynamic state of balance or equilibrium in asystem, or a tendency toward achieving and maintaining such a state in an effort to ensure astable environment" (p. 509). So what happens when a trauma, such as a child dying from anillness, occurs? Nadeau (1998) theorizes a death in the family is powerful enough to disturbhomeostasis.Relationship-Focused Coping TheoryAnother conceptual framework that underlies this study is relationship-focusedcoping theory. It is compatible with family systems theory in that the focus is on therelational context in which we all exist. Conceptualizations of coping typically haveconcentrated on problem-focused (attempting to change the situation itself) and emotion-focused (managing negative emotions that have been produced by the stressor) strategies(O'Brien & Delongis, 1996) . Recently, the understanding of coping has been expanded toinclude an interpersonal aspect, known as relationship-focused coping (O'Brien & Delongis).Since bereaved couples experience grief in the environment of their relationship, it ismeaningful to have some roadmap for understanding how they might cope together;essentially, what works and what does not. Relationship-focused coping refers to methodsthat aim to preserve and manage a relationship during stressful periods. As O'Brien andDelongis report, successful coping does not only involve finding solutions and dealing withemotions, but ensuring that one's important social relationships are maintained, especiallywhen the stressor occurs in a dyadic context.11It has been found that helpful relationship-focused coping is using three strategies:empathy, accommodating the other person's coping methods, and compromising (O'Brien &Delongis, 1996). Badr (2004) discusses complementary relationships . For instance, in aheterosexual relationship, the man might use more problem-focused strategies, whereas thewoman might be more emotion-focused. As long as both partners are actively engaged in theprocess, their different methods of coping will be complementary. In a sense, this is similarto how the DPM depicts adaptive coping?the individual moves back and forth between theemotions of grief and dealing with the practicalities of daily living in the midst of loss.Hindering relationship-focused coping might involve confronting, ignoring, blaming, orwithdrawing (O'Brien & Delongis) . This theory has yet to be applied to bereaved couples.My study will do just that. Since the literature shows that couples generally have difficultybecause men and women often grieve differently, perhaps applying the relationship-focusedcoping theory to bereaved couples will assist in re-conceptualizing couples' differential griefreactions with less pessimism and worry.12CHAPTER TWOCurrent Research KnowledgeThe literature review that follows includes the following: studies on pediatricpalliative care; studies on the impact of child loss on parents, research on how the familysystem deals with grief; studies that investigated marital dyads dealing with illness, andconcludes with studies that focus on bereaved couples. Again, the purpose of my study is todocument, describe, and understand the lived experiences of couples who have stayedtogether throughout their child's illness and eventual death and now on the journey ofbereavement. This review of the current research will reveal what has already been explored,where my study fits in and what gaps in the literature my research intends to fill.Pediatric Palliative CareFor parents of dying children, grief begins before the child's death . Those familieswho must encounter the culture of pediatric palliative care deal with their emotionssurrounded by other families and hospital or hospice staff. Contro et al . (2004) interviewed68 family members of deceased children to hear what they had to say about treatment,palliative care, and bereavement follow-up contact. The researchers also surveyed 466 staffmembers and community physicians to learn about their comfort and expertise in deliveringend-of-life care for children. The themes that emerged from the interviews with familiesinclude ineffective or inadequate communication and support from hospital staff, thechallenges inherent in witnessing a child in pain and having it not be properly managed, andnot enough follow-up after a child's death . These findings alert us to the many needs parentshave in and after pediatric palliative care and also might make one wonder: "When shouldthe care for the family end?"13Two non-empirical pieces of literature are informative regarding the difficult natureof the practice of caring for dying children. Rallison and Moules (2004) use the metaphor ofa cloak to describe how pediatric palliative care is often not talked about and purposelyavoided and ignored?it is covered by a cloak because many people, including healthprofessionals, are not comfortable with the idea that children die. Rallison and Moules talkof the `unspeakable' nature of pediatric palliative care. They strongly argue that families arethe unit of care, and that to empower them we must enable them to put words to theirsuffering and break free of the silence. Rallison and Moules suggest that "the cloaking andshrouding of the child and family silences the family's voice and hampers the ability to talkopenly and creatively about the situation" (p. 294). Does the cloaking of feelings of griefmake it difficult for couples in pediatric palliative care to speak within their relationshipabout their emotions?Himelstein (2006) explains that pediatric palliative care focuses on alleviating thesuffering and enhancing the quality of life for both the young patientand the family.Himelstein describes this type of care as being extremely complex for both the health careproviders and families because they are dealing with a myriad of issues: physical,psychosocial, and spiritual concerns, advanced-care planning (e.g., who are the decision-makers, do-not resuscitate orders), and practical concerns, such as finances. Himelsteinwrites that ethics and decision-making are a large part of the process, just as it would be foran adult dying from an illness. However, in addition to the practical and ethicalconsiderations, families are dealing with anticipatory grief and being forced to accept the factthat a child is dying.14Furthermore, little is known about the experiences of fathers who endure a child'sillness and death. Davies et al . (2004) hoped to shed light on fathers' experiences of having achild die from a life-limiting illness. This study, which used grounded theory methods,involved in-depth interviews with 8 fathers whose children received care at a hospice beforedying. Davies et al . use the metaphor of "living in the dragon's shadow" to describe what itis like for these fathers. The researchers found that these men battled with uncertainty,responsibility, and disruption to everyday life. Their perception of the role demands of fatherand husband also had an impact on how they experienced their child's illness and death.Marital relationships were under considerable strain and the researchers found that eachfather had wishful thoughts about escaping the situation but none ever did. This interviewexcerpt reflects how distant from normal life parents in pediatric palliative care can feel:You feel that you've been taken out of your life and put into somebody else's movie .. . the wrong movie. Like if you were watching a film in the theatre and when theychange the reels, they put on a reel from a different movie . . . it's that disorienting.It's a very alienating experience . (p. 121)After a child dies from an illness, what happens in the years after the death for thefamily? Martinson, McClowry, Davies, and Kuhlenkamp (1994) conducted a longitudinalfollow-up study of 48 families who had lost a child to cancer 7-9 years prior. This empiricalstudy which involved the family members filling out questionnaires and being interviewedshowed the impact of death on a family. Some participants reported feeling stronger andmore prepared for life's obstacles, whereas others reported being hypervigilant and fearfulbecause of how the child died. Some marriages dissolved and other couples chose to haveanother child. Siblings of the deceased reported double-losses : Loss of their brother or sister15and temporary loss of parents who were involved with care-giving. For all participants,family became more of a priority.Studies of Impact of Child Loss on ParentsDo bereaved mothers suffer more than bereaved fathers? Females are socialized inour society to be emotion-oriented, the nurturers and caregivers (Brown & Gilligan, 1993).Moreover, historically and universally, mothers are seen as symbols of care-giving. In astudy that explored the experience of mothers' bereavement from a feminist perspective,Famworth and Allen (1996) interviewed 10 bereaved mothers and found that the societal,family, and couple context was a place of marginalization for them. Most of the womenexpressed that having their child die was dismantling, disorienting, and devastating.Expected by themselves and society to be protectors of children, the mothers had a troublingtime with their roles and identity after their children died. The women shared an experienceof a having a lack of emotional support and understanding from their partners. For one of theparticipants, divorce came after realizing that her needs during grief could not be met. Thisexcerpt from that interview is illuminating:A week after Charlie died, he was like, "Are you going back to work? Are you goingback to work?" Well, I felt like he was pushing me in a corner, smothering me . . . .he just couldn't understand anything like that [her emotions], so he just took it uponhimself to start running, you know, instead of sitting there looking at me crying, ortrying to go to help me. I asked him to go get therapy with me . . . . It just ended ourmarriage. (p . 363)Other participants reported that they sought support outside their marriage when they decidedtheir spouses could not supply what they needed.16Znoj and Keller (2002) hypothesized that, compared to their non-bereaved gender-matched peers, bereaved parents would experience much more mental and physical distress.One-hundred and seventy-six bereaved parents answered questions on four scales. Theresearchers found that 46% of all the bereaved mothers experienced deterioration in theirphysical health since their child's death compared to 28% of the bereaved fathers. Thecontrol sample showed no difference in physical health for males and females, and theirgeneral health status was significantly better. Also, the bereaved parents had clinicallyelevated levels of depression, with the bereaved mothers reporting higher depression scoresthan the bereaved fathers. It would not be a huge leap to surmise that enduring individualemotional and physical turmoil could put quite a strain on a bereaved couple's relationship.Many people might have difficulty imagining that an event that violates the naturalorder could result in positive outcomes. Surprisingly, bereaved parents, compared to otherbereaved individuals, are the most likely to experience growth (Nolen-Hoeksema & Larson,1999). This is counter-intuitive but perhaps parents are more likely to engage in a process tofind positives in their child's death because it is such a strange and awful event. Nolen-Hoeksema and Larson found that bereaved people who perceived something positive in theirloss by 6 months following the death of a loved one had lower levels of distress at 6, 13, and18 months post-death than people who had not found something positive. This studyinvolved 455 participants whose family member had died. Fifty-four were mothers of thedeceased and 11 were fathers. Everyone in the study filled out questionnaires and wereinterviewed. One-hundred percent of the parents whose child had died 13 months earlierwere able to find something positive in the loss; this was a much higher percentage than anyother bereaved group. Nolen-Hoeksema and Larson speculate that "Parents who lose a child17may need more than any other family group to construct some positive meaning andconsequence from their loss to overcome the sense of injustice and confusion they feel overlosing their child" (p. 156).Like Nolen-Hoeksema and Larson (1999), Cadell (2005), inspired by Tedeschi andCalhoun's (2004) work on posttraumatic growth, found that bereaved parents can grow fromcoping with the trauma of losing a child. Cadell interviewed and administered questionnairesto 12 bereaved parents (mostly mothers), and learned that growth was common amongst thegroup. These parents, who lost a child 1.5-17 years before the study, reported feeling morecapable of coping with life's difficulties, stronger, and more compassionate towards others.Wheeler (2001) also found that, of the 166 bereaved parents who answered questionnaires,the majority had searched for and found meaning in their child's death . Riches and Dawson(1996a) describe a similar phenomenon and note that most of the 31 bereaved parents theyinterviewed found meaning with others in the bereaved parent community. Braun and Berg(1994), after studying meaning reconstruction in the lives of 10 bereaved mothers, note thatthe ability to restore meaning after a child's death depends on a previous meaning structurethat could "account for and `place' a child's death" (p . 105). The mothers in Braun andBerg's grounded theory study evidently went through three phases in the process of meaningconstruction: Discontinuity, disorientation, and, then, adjustment.Despite the fact that none of these studies looked at bereaved couples as a unit, theirfindings could be promising and hopeful for couples who have a lost a child. We can inferthat if bereaved mothers and fathers grow and reconstruct meaning individually after theirchild's death, they might also do so as a team .18Family Systems and GriefDoes the grief process affect the characteristics of relationships within a familysystem or do the characteristics of a family affect the experience of grief symptoms?Traylor, Haylsip, Kaminski, and York (2003) explored the dynamic between grief processesand family systems. Sixty-one people whose parent or spouse had died shortly before thestudy filled out questionnaires to assess their grief symptoms and characteristics of therelationships within their family 4-5 weeks after the death. They found that emotionalinteraction within a family was a critical indicator of overall functioning for the wholefamily, as was family cohesion. The families where affect was easily communicated had aneasier time processing grief. These results suggest that accommodating emotional expressionfor the bereaved is extremely beneficial to them, especially if you are related to the bereavedperson.Do family members create meanings of an event together? Nadeau (1998) suggeststhat many researchers have questioned whether family meanings do exist. Nadeau's researchproves that they do and that they tend to arise from family discourse, or `family speak.'Responding to a void in qualitative family grief research, Nadeau (1998) studied 10multigenerational, grieving families. Working from a family systems perspective, Nadeauhoped to gain an understanding of how families make meaning of their loss together. Insteadof simply questioning how individual members dealt with the loss or made meaning of thedeath, Nadeau inquired about how these families interactively understood and processed thedeath. Nadeau found that these 10 bereaved families, in a variety of ways, made sense ofdeath as a family unit. When a family member dies, we cope in the context of relationships .19Strength in a spousal subsystem likely leads to family stability. Thus, it is valuable for us toconsider how the family system, especially the spousal sub-system, reacts to a child's death.Coping in Marital DyadsHow do couples cope together during crises? The finality of a child's death differsgreatly from the possibility of an adult dying from a chronic illness. However, if we areconcerned with how partners in a romantic relationship deal with crises, Badr's (2004)inquiry into coping in marital dyads serves as a knowledge-builder. Badr sought to discoverhow two partners in a romantic relationship jointly cope when one partner has a chronicillness. Ninety healthy couples and 92 couples where one spouse had a chronic illnessanswered questions on the Relationship-Focused Coping Scale (O'Brien & Delongis, 1996)and the Brief COPE (Carver, 1997). In their findings, active engagement involved "partnersbecoming actively involved in decision-making and other problem solving activities" (Badr,p. 198). Protective buffering is described as the "extent to which partners deny anxieties andconcerns, put on a brave front, or defer to their partner to avoid disagreements" (Badr, p.198). The results of the investigation showed that if husbands and wives were congruent intheir use of active engagement and complementary in their use of protective buffering andavoidance coping, their relationships were able to adapt well to the situation.What are couples' narratives during stressful periods? Couples' illness-narrativeswere the focal point in Walker and Dickson's (2004) study. Fifty-three couples wereinterviewed together and completed questionnaires to examine how couples talk aboutillness, and how illness issues related to their marital interaction. Five different couple typesemerged from the data: the sympathetic couple, the independent couple, the mixed couple,the nonreciprocal couple, and the rejecting couple. Reminiscent of Badr's (2004) findings20and relationship-focused coping theory, couples in Walker and Dickson's study were mostsuccessful at handling problems when they were able to openly communicate with each otherand adjust to meet the needs of their spouse. The findings from this study suggest thatcouples create narratives and that these narratives not only demonstrate how a couplefunctions together but that they are shaped from culturally and socially determined scripts.Bereaved CouplesThe death of a child for a couple illuminates the fragility of life and can call intoquestion how much the relationship can withstand. To use Tedeschi and Calhoun's (2004)metaphor, traumatic events are like earthquakes: shaking up and threatening to shatter one'sunderstanding of the world, ability to make decisions, and sense of meaningfulness. To takethe metaphor further, bereaved parents might inquire: What will this seismic event do to ourrelationship?Intimacy is multidimensional and includes intellectual, sexual, recreational, social,emotional, and spiritual intimacy (Schaefer & Olson, 1981). In a qualitative study with asocial-constructionist perspective, Hagemeister and Rosenblatt (1997) interviewed 24couples who had lost a child 1-32 years prior and uncovered their stories of sexual intimacyfollowing the death. Hagemeister and Rosenblatt sought to discover the meanings couplesattributed to sexual intimacy and its absence during bereavement. Consistent with social-constructionist perspectives, the meanings that both people in the partnership gave to sexualintercourse and sexual touching usually was linked to their ability and interest in gettingintimate with their partner. Sixteen of the 24 couples reported difficulties with intimacywhich resulted in some relationships ending. Sexual intimacy for some of these pairsproduced guilt, feelings of emptiness, and intense feelings about the loss. Thus far, this is the21only study that has investigated the meanings attributed to sexual intimacy for bereavedcouples.Lang, Gottlieb, and Amsel (1996) discovered that husbands and wives typicallyexperience grief differently. The researchers had 31 bereaved couples who lost an infantchild 2-4 years prior to the study fill out questionnaires measuring their bereavementexperience, somatic functioning, and intimacy in their relationships. Thirty-six non-bereavedcouples completed these tests as well. Bereaved husbands reported less guilt,meaninglessness, yearning and fear than their wives. After a follow-up, it was found thatthose dyads that had lower intimacy scores experienced more intense grief. Again, it is clearthat intimacy is a complicated and important aspect in the relationship of bereaved couples.Schwab (1992) found that the death of a child can put a couple's relationship indanger. Interested in determining what the passage of time would do to bereaved couples'relationships, Schwab interviewed 20 heterosexual couples one month and then four yearsafter their child's death. This study provided longitudinal data on this population and filled avoid in the literature. For all participants, their child's death was the most devastating thingthey ever experienced and the main themes that emerged spoke of marital relationshipproblems, including: fathers' worry and frustration over wives' grief, wives' anger overhusbands not being emotional enough, communication difficulties, and decrease or loss insexual intimacy. Withdrawing from one another, for all of these reasons, was commonlyreported. It seems as though bereaved couples might have struggles around attendingsimultaneously to their own intense pain and their spouse's . Since I am interested in the lifeof bereaved couples, this study serves to build my knowledge about what can happen in theyears following the death.22Kamm and Vandenberg (2001) explored whether speaking about grief helped couplescope with it and feel more satisfied in their relationship. Thirty-six couples who hadexperienced the death of a child filled out questionnaires about communication, griefreactions, and marital satisfaction. Similar to Schwab's (1992) finding, the women in thisstudy preferred when their male partners were expressive about their grief and this led tomartial satisfaction for the women. The main finding in Kamm and Vandenberg's study wasthat positive attitudes about communication resulted in greater grief in the earlier stages forthe couples but lower levels of grief in the long run. Similar to Traylor, Hayslip, Kaminski,and York's (2003) finding about grieving families, the dyads who did not value opencommunication about the loss experienced greater grief consistently for a longer period oftime. Although not discussed in this article, one could hypothesize that for the relationshipswhere one or both individuals were experiencing high levels of grief and did not feelcomfortable expressing it, this could lead to martial disharmony and perhaps separation.It may be that the relationships of bereaved couples are not as different from therelationships of non-bereaved parents as we would think. Najman, Vance, Boyle, andEmbleton (1993) concluded that bereaved couples and non-bereaved couples do not differ interms of quality of their marital relationship. They did a follow-up study with 809 parents 2months and 6-8 months after their infant died of an illness. Although there was an increaseof martial breakups immediately after the death, for those couples who stayed together, at 6months post-death there were no longer any marital adjustment differences compared tothose couples whose infant survived.After an extensive search, only three studies emerged that revealed couples' growthand/or strength following bereavement. Lehman, Lang, Wortman, and Sorenson (1989)23gathered data from 54 parents whose 1-28 year old child died in a motor vehicle accident 4-7years prior to the study and 61 matched controls. Although 21% of the married couplesreported that their marriage had weakened because of the loss, 29% said their marriage hadimproved. This quote from an interview with a bereaved mother captures this positiveoutcome:Her death has brought us closer together. My husband is more compassionate andlistens to me more. More in tune to my feelings than before and the pain andharshness of the type of death has strengthened the marriage. We've been able tocommunicate so much better than before. (pp. 355-356)In two projects most similar to this study, bereaved couples' relationshipsemerged as difficult or stable. Narratives created by 12 couples who lost children to vehicleaccidents, natural disasters, accidents, illness, at childbirth, and through murder, wereanalyzed by Riches and Dawson (1996b). Riches and Dawson found that relationships "layat the heart" (p.361) of nearly all of the parents' stories and that the degree to which theirpartner, other family members, friends, colleagues, and health professionals provided asympathetic audience to grieving was prominent in the participants' narratives. Riches andDawson learned that in marriages where partners were uncritical and listened supportively toeach other's grief story, the couple relationship was described as strong . The experience ofthe married relationship being a source of strength and support was true for several of thecouples in this research project.Gilbert and Smart (1992) collected data from interviews with 27 bereaved couples tolearn about dyadic coping in marriages where an infant or fetal death occurred. Theydiscovered that social support, particularly within the couple relationship, contributed to24making meaning and healing for the participants. Gilbert and Smart found that althoughmost couples in the study went through an initial period of instability and marital strain, itwas followed by an increased sense of stability in the marriage. This excerpt from aninterview shows the strength that can exist in a marriage where a child has died:There's another human being there sharing this with you. I suppose the idea is it'sbeing shared. It helps . I guess that would be the main strength that she was able togive me was that there's someone here that loves me and also loved Timmy, and Ilove her and vice versa. (p. 76)Summary of LiteratureWhen a parent's world is shattered by their child's death, how can they rebuild theirlife? Social support seems to be integral in the grieving, meaning construction, and growthprocesses. If intimacy and social support allow us to make meaning of child loss (Nadeau,1998; Riches & Dawson, 1996), then paying attention to how bereaved couples cometogether, rather than break apart, is important. Tedeschi and Calhoun (2004) opine that "thedegree to which individuals engage in self-disclosure about their emotions and about theirperspective on the crisis, and how others respond to that self-disclosure, may also play a rolein growth" (p. 7). My assumption is that when couples who have lost a child communicateopenly with each other about their grief, and listen with empathy, they are creating a fertileground for four positive potential outcomes: (1) achieving intimacy and relationshipsatisfaction, (2) decreasing isolation that often accompanies grief, (3) making meaningthrough their narratives, and (4) experiencing posttraumatic growth.It is clear after reviewing the literature that most of the problems bereaved couplesface are in the areas of communication and intimacy. It is apparent that disparate grief25reactions and intimacy needs can cause couples to question if their relationship can handlebereavement. However, based on the beliefs about adaptive coping in both the DPM andrelationship-focused coping theory, contrasting styles may be beneficial interpersonally.Partners in a relationship might find that they learn adaptive coping methods from each other.A partner who has a tendency to ruminate and be very affect-oriented might benefit fromhaving a husband or wife who is inclined to be focused on daily living activities (e.g., findinga good movie to see). The partner who is more likely to confront the emotions of loss mighthelp their spouse process their grief. If a husband and wife have complementary copingstyles, and accommodate each partner's grief reactions, the support they offer to one anothercould result in individual and interpersonal meaning-making and growth. Actively engagingin problem-solving by seeking social support, as well as expressing emotions to others,allows people to find something positive in their grief (Nolen-Hoeksema & Larson, 1999).The grief theories discussed above illustrate the importance of rumination and movingforward. Therefore, if bereaved couples are able to reorganize their life together so that theyvalidate each other's grief reactions and spend time both confronting the death and restoringtheir daily routines, their relationship should be able to handle the tragedy.As Klass (2001) emphasizes, it is important for bereaved parents to keep theirdeceased child's spirit alive and they can achieve this by interacting with people in theircommunity who recognize the death, are mourning it, and where a continuing bond with thechild is validated and shared. Before walking into the community for support, bereavedparents grieve first with close family members. Parents who have multiple children may findthat how they grieve has a significant impact not only on their spouse but on their otherchildren. As Nadeau (1998) found, family members do process grief together . Parents serve26as models for children and the strength of the spousal system can lead to family stability.This is important to emphasize because bereaved parents are often coping both in the contextof a marital relationship and within a family system including other children. My study willfocus on bereaved parents' marital relationships and explicate the relationship processes thattake place in the midst of pediatric palliative care and grief, as well as everything andeveryone else in their lives.27CHAPTER THREEMethodWhat are the narratives of intact bereaved couples whose children have died afterreceiving palliative care for a life-limiting illness? Narrative inquiry was used to answer thisresearch question. This method was chosen because the goal of my research was to lookspecifically at the stories constructed by bereaved couples. My interest in meaning-makingalso led me to select an approach that would invite the participants to tell their stories. Oralnarratives are opportunities for retrospective meaning-making (Chase, 2005). Narratingone's biography is an event where the person " . . . shapes, constructs, and performs the self,experience, and reality" (Chase, p. 657). Joint construction of relational stories can illustratea couple's mutual thoughts about the emotional nature of their relationship (Gergen &Gergen, as cited in Walker, Dickson, & Orbuch, 2004), and, I believe, are dynamicperformances of themselves as partners.Gilbert (2002) suggests that narrative approaches and grief research complement eachother because stories bring together the elements of experience, thoughts, and feelings, andthat people have an urge to develop stories to make order out of chaotic, possibly insensible,events such as major losses and traumas. Gilbert, as well as Tedeschi and Calhoun (2004),posit that narratives of trauma and survival are important to survivors because it forces themto confront questions about meaning and how to reconstruct meaning in their worlds afterloss. Bosticco and Thompson (2005) assert that for individuals in grief and bereavementstory-telling has these positive, and sometimes healing, functions: sense-making andcatharsis. Riches and Dawson (1996b) state that bereaved parents, particularly in talkingabout their child's death, are involved "in an essential creative process which allows parents28to draft, re-edit and rewrite their new and apparently meaningless status" (p. 360) and thathaving a sympathetic audience is crucial.ParticipantsFive couples agreed to participate in this study. I decided to use this number ofparticipants because I expected the in-depth interviews with the 5 couples to provide me withsufficient data as well as the type of data that I was looking for. The counsellors at CanuckPlace generously helped me recruit by sending out letters of invitation to bereaved couplesthey knew. They sent out letters to 20 couples who they thought would qualify and I initiallyheard back from 2 interested couples. To achieve the objective of interviewing 4-5 couples,the Canuck Place staff and I decided to send out reminder letters to the group as well asletters of invitation to a new group of 11 bereaved couples. After this mail-out, I gottelephone calls from 3 couples who expressed interest and agreed to take part in the study.The participation was voluntary and the participants contacted me first. The main inclusioncriteria for the project were: (1) couples who are currently married/common law and weretogether at the time that their child was diagnosed with a life-limiting illness; (2) they self-describe as being "intact;" (3) their child was diagnosed with a life-limiting illness, receivedpalliative care, and died, (4) it has been at least 1 year since the death and (5) they can speak,read, and write English. The exclusion criteria were : (1) couples who are separated orconsidering separation; (2) couples where one or both people are experiencing extreme griefreactions; (3) couples where only one person is willing to engage in the study interview, and(4) couples whom I know from working on the cancer ward at British Columbia Children'sHospital.29ProceduresAs stated above, participants were notified of the study by a letter of invitation whichwas given to them by a member of the staff and a counsellor at Canuck Place. The coupleswho were interested and available to participate were sent the letter which described thestudy and it included my telephone number and e-mail address. The potential participantshad to make the initial contact. When they telephoned, I described the project to one of thepartners and determined their interest and their partner's in participating and screened for theinclusion criteria. The calls served also as a way to begin the rapport-building process . Iasked them to tell me a little bit of their story (e.g., When their child died, name and age ofchild, how they are doing now). I then set up interviews with those who were interested,along with their consenting partner, at a day, time, and place that was convenient for them. Iinterviewed one couple at Canuck Place in the cozy, quiet music room and the other couplesat their homes. Finally, I reminded the participants that the interviews would be about theirprocesses as a couple and encouraged them to spend some time reflecting, writing, or talkingwith their partners about what they might want to include in the narratives they would besharing with me.Each participant (including each person in a couple) was required to sign a consentform before I began the interview. The interviews were conducted with both spouses presentand each interviews lasted about 1.5 hours (with the exception of one couple who I met withfor 3 hours), ensuring that enough data was collected and so that there was sufficient time foreach story to be fully told. The interviews were audio-taped and the audio-tapes weretranscribed almost immediately after the interviews. The interviews were developed toanswer a broad question which invited a story, as suggested by Reissmann (1993) in her text30on narrative analysis, and there were some facilitating questions to assist the participants inelaborating on their story (see Appendix E, the Interview Guide). The transcriptions andsummaries of their narratives were sent to each couple in order to verify the data.TranscriptionTranscribing discourse, like photographing reality, is an interpretive practice.Decisions about how to transcribe, like decisions about telling and listening, aretheory driven and rhetorical . . . Different transcription conventions lead to andsupport different interpretations and ideological positions, and they ultimately createdifferent worlds. Meaning is constituted in very different ways with alternativetranscriptions of the same stretch of talk. (Riessman, 1993, p. 13)Lapadat and Lindsay (1999) emphatically discuss how transcription is an interpretiveprocess and that, when transcribing, we need to be aware of the contextual factors at play inthe production of speech. Contextual factors include participants' histories and roles, detailsabout the interview setting, as well as cultural factors. Essentially, Lapadat and Lindsay statethat transcription is subjective and that it is important as a researcher to make known thetranscription key (e.g., coding for pauses, loudness, animated tone). I believe thattranscription is part of the analysis and thus, was as reflexive as I could be when transferringthe data from the audiotapes onto paper. I made note in the interview transcripts of the non-verbal interactions between partners, tone, pauses, laughter, and crying in addition to theverbal content. These notes were an integral part of the narrative analysis .31Narrative AnalysisAfter the interviews were transcribed, I analyzed them using the holistic contentmethod and categorical content method as described by Lieblich, Tuval-Mashiach, andZilber's (1998) in Narrative Research : Reading, Analysis, and Interpretation.Holistic Content MethodInitially, I read and reread the interviews to analyze the content that was embeddedwithin a larger context. The holistic content method helped me in presenting the interviewmaterial in narrative form and in attending to the entire story; whereas the categorical contentmethod alerted me to the details and themes of each story. I read the interviews for theoverall meaning of the stories, the elements that "spoke to me" (Lieblich, Tuval-Mashiach, &Zilber, 1998). I then wrote a brief overview of each interview in chronological order.Categorical Content MethodAfter doing the holistic content method that illuminated the content of the story, Ibroke the stories down into small categories in order to interpret the most salient aspects ofthe content. Two categories were posttraumatic growth (PTG) and meaning-making since Iwas interested in determining if the inclusion of meaning-making and/or PTG in theparticipants' stories had some relation to them remaining together as a couple . Tedeschi andCalhoun (2004) conceptualize PTG as an experience of positive change that is a consequenceof coping with an extremely challenging life crisis. Generally, PTG is manifested in "anincreased appreciation for life, more meaningful interpersonal relationships, an increasedsense of personal strength, changed priorities, and a richer existential and spiritual life"(Tedeschi & Calhoun, p. 1). To guide me in my search for meaning-making in the narrativesof each couple, I kept in mind Reiss's (Reiss, as cited in Nadeau, 1998) notion of family32meanings which is that family members do develop shared constructs and one can see in thefamily's interaction how they respond to challenges and construe meanings interactively. Iexamined the content of the interviews for expressions of PTG and meaning constructionthrough the couples' narrations and actions. Lieblich, Tuval-Mashiach, and Zilber (1998)discuss organizing the categorical content in 4 steps: (1) choosing a subtext, (2) definingcontent categories, (3) placing the material into the categories, and (4) making conclusionsbased on the results. I reread the transcripts many times while engaging in the data sortingprocess. Finally, using my findings from the categorical content analysis and the holisticcontent analysis, I revisited the original research question and determined if the data selectedwas representative of the interview data. I kept front and center the research question andonly responded to data that was pertinent.RepresentationChase (2005) describes how narrative researchers perceive themselves as narrators asthey assemble interpretations and create ways to present the ideas flowing from the narrativesthey have heard. It felt most natural to me to represent the stories co-constructed by thecouples and myself as holistic stories?with beginnings, middles, and endings. In ChapterFour, these stories are presented along with my narrative, the last story, which includes thethemes across all of the couples' stories . The narratives stand alone as teaching tools. Theresearcher's narrative provides the reader with the authorial narrative lens.33Ethical IssuesIn a study such as this potentially sensitive issues could have surfaced and safeguardshad to be built in. As Rosenblatt (1995) passionately writes, bereaved people can gaintremendously from talking with someone who takes their stories seriously, and thatexperiencing grief in an interview is not necessarily a bad thing. Ethically, though, as aresearcher, I needed to ensure that I was not causing the participants harm by focusing onpainful matters (Rosenblatt). The informed consent documents included a warning thatstrong emotions might be aroused during or after the interviews, and that the interviewscould be discontinued at any point. Secondly, I only selected respondents who had beenbereaved at least 1 year, making the assumption that they were most vulnerable prior to that.However, I decided that if anyone seemed to be experiencing intense grief reactions duringthe interview, the interview would abbreviated and I would refer the person or people tocounselling services. Indeed, all participants were given information about counsellingservices in case the interviews brought up feelings that needed to be processed.Another warning was made in the consent form that although it may be therapeuticfor some participants to tell their stories, the purpose of the interview was research-related.However, even though it was not counselling, I think that as a researcher talking to peopleabout their stories of child loss and grief, it is critical to use the counselling skills of listening,validating, being non judgmental, and being supportive.When reporting the data, I maintained the confidentiality of the participants by usingpseudonyms. If there were aspects of the stories that participants requested I omitted, and Ihonored these requests. Additionally, narrative research, as Gilbert (2002) emphasizes, has aunique ethical issue which is about ownership of the story. Since narratives created in34research settings are co-constructed by the researcher and participants, problems may arise ifa participant feels that their story is not represented accurately (Gilbert). I understood that Ihad a responsibility to avoid altering the stories in any way. To insure accuracy, I presentedmy interpretations to the couples to have them verify and give critical feedback before Imade the stories public. Finally, participants were assured that all data will be destroyed fiveyears after it is collected.Lastly, to be an ethical researcher, I have made known any shortcomings of this studyto my colleagues and in my presentation(s).Criteria for TrustworthinessReissmann (1993) outlines three criteria used to judge the trustworthiness of anarrative inquiry: (1) correspondence, (2) coherence, and (3) pragmatic usefulness . I usedthese three criteria to establish rigor as well as the criteria of confirmability which issuggested by Siegle (n.d.).CorrespondenceCorrespondence is also referred to as member checks and relates to the degree towhich the findings adequately represent the storied lives of the participants. To ensurecorrespondence, I sent the transcripts and couples' stories back to each participant and askedthem if they see themselves in the narratives and if the narratives adequately represent theirexperiences. They were given an opportunity to request that data be omitted, corrected, oradded. None of the participants requested for data to be omitted or corrected . One coupleasked that I add, with emphasis, how critical Canuck Place was in giving them a sense ofbeing supported.35Another aspect of correspondence is linking the research literature on the topic to thefindings. After analyzing the data, I spent time reviewing the relevant literature and lookingfor correspondence with my findings.FeedbackAll five couples shared with me that it was helpful for them to share their story with asensitive, interested listener. One female participant shared with me that their final writtennarrative was something tangible that they could hold onto; it was a gift.CoherenceCoherence refers to the extent to which the thick description reflects the overallobjective the narrator is trying to accomplish in story-telling (Reissmann, 1993). It alsorelates to how clear the study is and if the findings are understandable. Presenting the storiesto the participants aided in ensuring that the findings were portrayed coherently. In addition,I had my research supervisor and committee review the stories and provide feedback onclarity of the narratives. This sharing of perceptions, insights, and analyses also allowed forfurther understanding and served to give visibility to any potential researcher blind-spots.Pragmatic UsefulnessI collected detailed, rich descriptions from my participants and reported this datasufficiently and with accuracy. To determine if my findings could be applied to othercontexts or with other people, I showed my findings to two counsellors who work in pediatricpalliative care and one bereavement counsellor. These counsellors reported that the findingswere useful and have pragmatic value to counsellors and educators working in the field ofpalliative care and grief and loss.36ConfirmabilityTo show that the findings are the product of a focused inquiry and not influenced bymy biases, I reviewed the audiotapes and transcriptions; my process notes in my journal;notes that include any hypotheses or assumptions I had about the data; and the finalnarratives that I wrote using reflexivity.Researcher's SubjectivityWhen I heard the news, this world changed for me. It no longer felt like I wasbeing enveloped by warmth, protected from the pains and challenges that livingbeings must face at some point in our journey. I felt exposed, naked in a frigidenvironment and uncertain of what direction to take to find somewhere that wouldalleviate the shivering in my body and the dullness in my brain. I didn't want out, perse, I knew I needed to accept the news and adapt to this new reality. I couldn't findrefuge in my previous idealistic way of viewing things because I was being taught atthat moment that being idealistic doesn't prepare you for harsh realities. I couldn'ttrust idealism anymore. It had deceived me. It had scammed me. It had sold a portraitof life to me that was inaccurate. (From a journal entry I wrote in January, 2003)In 2000, I lost my older sister after she died in a hiking accident. For about 1.5 yearsafter my sister's death, I perceived myself as being absolutely shattered . That was my self-image. I would shift back and forth between numbness and being too conscious of what hadhappened to my family and myself. I spent a year and a half wearing sweatpants and barelymaking it out of the house aside from attending some of my university classes. Slowly,though, after more time had passed, I realized that although I was living a new existence, aless "happy-go-lucky" one, it didn't sit well with me to give up on life . Indeed, I heard mydeceased sister urging me to live it up and not remain defeated by despair. I recall my momsaying to me one day about two years after Lynn died, while I was deep in depression, barelyable to make it out to my university classes, "You either sink or swim, Niki. It's yourchoice." With trepidation and a slice of resistance, I chose that day to swim and continue37swimming. I also realized that in this new world, I would have to spend my time doingthings that energized me, gave me hope, and kept me connected to others.In the last number of years, the word grief, for me, has represented two distinct partsof my life and my self. One of my identities has been as a researcher/student and at the centreof my studies are the concepts grief and loss. More deeply connected to me, though, is myidentity as a bereaved sibling and because of that, grief is a very personal and sensitive topic.In the process of designing this study, it became clear that these two identities or roles arereally not so separate but, in fact, are inextricably linked at times. They work as partners,informing one another. It is almost like the romantic partners in this research project?theyhave their individual experiences and then there are parts of their processes that are shared.As a researcher, I have felt compelled to search for answers to these questions: howdo grieving people live in a society that traditionally and chronically avoids/denies thethoughts and emotions provoked by grief and loss? How do their relationships with familymembers and friends enable their necessary grieving or challenge it? How do parents surviveafter the death of their child due to an illness, when despite all of their love and protectionthey ultimately did not have the power to prevent their child's demise? As a survivor of aloved one's death, I sought out methods to help me not only exist but thrive despite thepainful tragedy. Interestingly, it has been learning how other people exist/thrive in the throesof grief that has given me some of the energy I have needed to keep living. In essence, it hasbeen that sense of contribution, connection, community, understanding self and others, thathas replenished and reinvigorated me along my journey.I entered the process of my study with a feeling of urgency to give voice to parentswho have survived a child's death . I am motivated by my parents' relationship that has38strengthened during their intrapersonal and interpersonal bereavement journeys. They haveshared with me anecdotes about friends who have also lost children and have kept theirmarriages together and full of love. As a worker on the pediatric cancer ward at BritishColumbia Children's Hospital (BCCH), I have been witness to married partners/couples whohave held onto each other through the stages of their child's diagnosis, treatment, palliativecare, and into bereavement. I want to be transparent about my background as I know that itserved as both a resource and a possible source of bias in the data collection and analysisphases of my study. I have included a brief description of my personal experience so that thereader will be able to understand my interpretive stance. As Chase (2005) explains in herdiscussion of narrative research, it is crucial for the researcher to treat participants assubjects, rather than objects,and to also consider their subjectivity. This is the lens that Iviewed the narratives from and it did influence my analysis. I used caution and reflexivity sothat the narratives speak for my participants and not for me.39CHAPTER FOURStories and ThemesThere are big and small stories behind all that we know. It has never been sufficientfor me to tell someone I care about that my sister died and to not tell them stories about herand our relationship. It is my way of not losing her; keeping her alive in my memory andothers'. Likewise, it has never been enough to read or hear that someone lost a loved one andto move on to the next event without stopping and asking them to share, if they'd like to,about that person. In this chapter, I hope to honor the experiences of the couples Iinterviewed by sharing the stories that uncover the experience of having a sick child whodied. This is a way of helping them honor their child.Without the willingness and openness of my participants, this chapter would bedevoid of richness. I was fortunate to have 5 couples who sat with me and let me into theirworlds of coping with a severely sick child and managing the grief that has accompaniedthose children's deaths . As my friend Elaine Stevens would say, I got to be in the presenceof the "nakedness of the human spirit" which was a real privilege.Co-constructing StoriesEach couple generously welcomed me to participate in the conversations and, so,instead of feeling like an outsider or a clinical researcher, I felt `part of' the research process.In describing the collaborative nature of their research methods interviewing bereavedparents, Riches and Dawson (2002), use the term `exploration' as opposed to `observation' toreflect how they interacted with their participants. As I sat in the homes of 4 of the couples,and in an intimate room in Canuck Place with 1 couple, it felt like each had let me become anexplorer of their experiences with them. These couples did not answer any of my questions40in a sentence or two, they told stories abundant in details and emotions. During the time Ispent reflecting on the interviews, I rediscovered the reason why I cared so passionatelyabout doing this particular research: Because grief always occurs in the context ofrelationships (with self and others) and that once you are in grief, evidently, you can never goback to life without it. And that, to me, should be known by people.Chase (2005) extensively argues that how the researcher listens to the narrators'voices both during and after an interview?while writing and reading the transcripts?is theresearcher 's voice and I agree with this. Thus, during the process of reading and re-readingthe complex and multi-dimensional interview transcripts as well as my reflection journal, Imade a concerted effort to separate my voice from the participants' voices so that I could beopen to what the narrators were trying to communicate to me through their stories withoutbeing blinded. I understood the tentative nature of my findings and happily relied on theparticipants' feedback of the drafts of the narratives to inform me about the stories' accuracy,or lack of Ultimately, these were co-constructed stories.To honor the tradition of narrative research, which tends to move away from usingtheme-oriented methods to analyze qualitative data, I chose to present each couple's story asa holistic story (Chase, 2005). Notwithstanding, though, I believe that locating the themesacross interviews to be of practical and theoretical importance. To do this, I intuit that it isbeneficial to list experiences that the bereaved couples in my study had in common. Idiscussed the themes across couples following the couples' stories . To orient the reader, Iintroduce each couple before telling their story. Pseudonyms were used to protect theprivacy of the individuals who participated.Following, are the couples' stories .41CHRISTINE AND DONChristine had contacted me about the study after receiving the letter of invitation. Wetalked briefly about Michael and her experiences at Canuck Place and in bereavement priorto the interview in this phone call. She said that she was happy to help out and they lookedforward to sharing their story with me. I met with her and Don about two weeks later. Iconducted the interview at Canuck Place in the music therapy room. The interview was about1.5 hours in length.It was energizing meeting with Christine and Don. There was an aliveness aboutthem that was enjoyable to be around. They both had a lot to share and were happy to have alistener. They are both in their early thirties . Don works in the health industry and Christinerecently went back to school to become an accountant. Don and Christine have a son inaddition to their deceased son. While telling their story, it was interesting to observe thecouple processes; they allowed each other the space and time to talk about their individualbits and there was overlapping and, at times, excited voices when they were discussingcouple experiences. Overall, they were very comfortable story-telling together and seemedcomfortable to have me there listening.42Two Souls Against the WorldLooking back on their relationship, after nearly a decade of being married, Christineand Don recognize that they have always been best friends. While their relationship hasremained stable, what they have been through together has not been predictable or easy, tosay the least. On July 11, 2003, Christine gave birth to their second child, a boy namedMichael. They had hopes that this child would be healthy and not have any physical ordevelopmental challenges unlike their other son John who has apraxia. They were also veryexcited about giving John a sibling. Michael was a wonderful baby . He seemed to bedeveloping normally and nothing indicated that he wasn't healthy. However, the picturestarted to change dramatically around Christmastime of that year when he was about 5months old. Christine and Don noticed that Michael couldn't hold his head up, he wouldarch his back and his arms would stiffen up, and he didn't have very good muscle tone.Around that time, he also had a bout of chicken pox which really took a toll on his system.The couple braced themselves because they knew that something with Michael wasseriously wrong even though they didn't know what it could be . After going to theirpediatrician and having tests done, the doctor told Christine and Don it could be cerebralpalsy. Since Don's sister has cerebral palsy, they had a good understanding of the disorder.The couple starting preparing themselves for that diagnosis and what life would be like ifMichael did, in fact, have cerebral palsy. They had no idea that the real diagnosis would bemuch worse.Almost immediately after their visit with the pediatrician, Michael started havingrespiratory distress and after a maddening night at two different hospitals, Christine and Donlearned that Michael had mitochondrial disease. Although they had been planning for the43struggles that arise caring for a child with cerebral palsy, Don and Christine now had toconfront a life-limiting diagnosis and the news that their child would eventually die from theillness he had. So rapidly, life became very different for these parents. Like all youngparents in the early stages of life with a new child, they had hopes and dreams and now hadto concede to a bleak reality and shift gears.With the diagnosis that Michael had it was unpredictable what the illness trajectorywould be; it was unknowable if he would have periods of stability and live for years or wouldbe acutely sick and die young. Grief entered the scene early for Don and Christine. Donrecalls his worst grief point, "the darkest night of the soul," being shortly after the day theyreceived Michael's diagnosis . For both Don and Christine, the grief wasn't just about the lossof their personal dreams but came from placing themselves in Michael's shoes and feelingbad for him. Don and Christine engaged in lots of conversations about Michael, his illness,and their feelings. They felt like "two souls against the world." One thing that they wereunequivocally in agreement about was what they would do if Michael progressed to a placeof being in extreme discomfort?that they would want to let him go, let nature take itscourse. Indeed, Don and Christine rarely disagreed about anything and were able to supporteach other throughout the difficult journey. They naturally fell into certain roles, withChristine being the primary caregiver?spending lots of time at the hospital with Michael?and Don looking after John.The family spent quite a bit of time in and out of Canuck Place, a children's hospice'in Vancouver, in addition to British Columbia Children's Hospital . Michael frequentlyneeded medical attention and thus it was rare that Christine and Don could take any timeaway to be just with each other. Friends and family would often encourage the couple to go44on a date and when they followed the advice they would find themselves spending the entiredate talking about Michael. Unsurprisingly, that is where their minds and hearts were.Around June 2004, it became clear that it was just a matter of time before Michaeldied as his health was getting increasingly worse and he had stopped eating. The family hadplans to throw Michael a party for his 1stbirthday at home but instead they celebrated atCanuck Place. Michael died on July 30, 2004.As they travel the path of bereavement, Don and Christine acknowledge that they are"wounded people." Christine, with passionate honesty, describes how losing their child hasdestroyed every part of their life; that everything has suffered, and thatthey aresuffering.Fortunately, they have walked into this new world together?a world where they are acutelyaware of death and grief?and their relationship is as strong as it was before this trauma.Although their interpersonal relationship hasn't transformed much, who they are asindividuals has and it is as though they are constantly getting to know different people. BothChristine and Don left their very social selves behind and have become more withdrawnaround others. They used to get a lot of energy, as a couple, being around a lot of people.That is not the case anymore.Their status as bereaved parents has become central to Christine and Don's identities.Christine says that "maybe we're more compassionate now" but qualifies that by noting thatthey were pretty compassionate before. What has certainly changed is who they are in theirsocial lives. They each have parallel stories of being in social situations where they couldn'thandle being around the other people for too long. Christine recalls going to a Christmasparty the year that Michael died and feeling miserable. Don talks about being so consciousof the difference between his life and those of his work peers, many of whom had children at45the same time that they had Michael, that he would just want to "show his face and do thecorporate thing" and then leave quickly from company parties.Bereavement is such a large part of the couple's life that their closest friends now areall people who are bereaved. These are people who can understand that Christine and Dondon't want to put on a front of being "bravely bereaved" or happier than they actually are.With these friends they can talk openly about Michael without feeling uncomfortablebringing him up. Unlike others in their lives, these friends who are part of the bereaved clubunderstand that there isn't a timeline for grief and Christine and Don can't be hurried throughit. The safe, supportive space of Canuck Place's bereavement group has also played anenormously helpful role in comforting not only Christine and Don, but assisting John withhis coping as well.Losing their child has had a powerful impact on the couple's way of being in theworld. One method they used to attempt to soothe themselves or escape the pain of theirgrief was to spend money freely (and, at times, carelessly)?something that they never didprior to Michael's death . It was also a result of having a new perspective on life . They bothsee life as more fragile now, that it is short and some things they used to see as important arenow viewed as trivial. They have had to accept that bad things do happen and that thingsthey plan for?have two sons close in age, together forever?do not always work out. Theirbiggest focus now is on providing as much affection and love for John as they can.Even though Michael is not alive anymore he still is an important member of thefamily. The absence of his physical presence is deeply felt though. Recently, the family wason a long drive and a song came on the radio that John loves. They all were singing andChristine suddenly broke out into tears. Here they were as a family sharing a happy moment46but during that moment the missing of Michael became so pronounced. Don completelyunderstood what was happening with Christine without her having to explain. They both talkabout how it is hard to have "guilt-free fun" or "whole fun" now. Thankfully, theyunderstand what is going on for each other and allow their partner to have the space and timeto be in their emotions. They are there to offer each other support. They are nurturing witheach other and neither are "hostile people."Although not much has changed in their relationship with each other, one notabledifference has been in the area of intimacy. Christine has found that she has needed to bequite self-soothing and "insular" since Michael's death . She has preferred to not be toophysical with Don and has needed her space. Don has a different coping style and has beenmore comfortable with being physical close and wanting intimacy. However, for both ofthem a challenge while Michael was sick was having the space and time to physicallyconnect with each other. It was rare for them to not have nurses or other family membersaround.Difficulties with intimacy for the couple also speak to the meaning or purposeassigned to sexual intercourse. They want to have another child but are uncertain about howthey will go about doing this considering that Michael died from a genetic disease. Thecouple has decided that they will defer talking about this and making decisions for a numberof years. For the time being, they will concentrate on settling into life, loving John, andChristine has recently gone back to school so she will be busy with that. They are alsoworking on rediscovering the passion they have for each other. Now they are interested indiscovering the reasons why they are married to each other again.47Don and Christine, the two souls against the rest of the world, move forward holdingeach other's hands and the hands of John . And Michael will always be with them as they dealwith life's ups and downs. Although they have been damaged by life's circumstances, theydo have each other and they have a network of people in their lives who understand what it islike to be in the world of grief.48JACK AND LINDSAYLindsay telephoned me about the study after receiving the letter of invitation and saidthat she and Jack would like to participate. I got a few details on the phone from her aboutJamie and then met with her and Jack about a week after the first phone call. The interviewwas conducted in their home. The interview was about 1 .5 hours in length.Being in the room with Jack and Lindsay as they opened up about their experienceswas powerful. Emotions were close to the surface for them and I found that I was deeplymoved by what they shared with me and also by how they were sharing it. Jack is in hisearly forties and Lindsay in her late thirties. Jack is a business-owner while Lindsay takescare of the home and their children. They have two young daughters in addition to theirdeceased son. In the interview, like with the other couples, it was special to observe theircouple processes. Jack gave Lindsay as much room and time as she needed to reveal herthoughts and feelings and her experience of the events they lived, and Lindsay did the samefor him, although he didn't talk as much as she did .49Hope Will Keep Us AliveLindsay and Jack were an inseparable and adventurous duo before deciding to settledown and have their first child. In October 1998, after more than a decade of being together,Lindsay gave birth to Jamie. The couple had always enjoyed doing projects together and thisnew project?caring for their Jamie?was going to be unlike anything else they had everdone and probably ever could conceive of doing. In March 2001, Lindsay and Jackwelcomed their second child, a baby girl named Dawn, into the world. Jamie, who was 2 .5years old at the time, was having headaches and difficulty balancing convincing Lindsay andJack to consult with their pediatrician. Although they were worried about Jamie, nothingcould have prepared them for the news they got 10 days after Dawn's birth day: Jamie hadcancer and they were going to operate on his brain the next day.The couple, who describe themselves as "positive" people, plunged right into theworld of care-giving for a child with cancer with their heads up and their minds' optimistic.Never asking "Why us?" Lindsay and Jack, with the help of, primarily, Lindsay's mother andJack's sister, joined together to make this a team effort. Jack, the owner of his own company,was able to excuse himself from work and engage with Lindsay and Jamie as they movedthrough treatments, appointments, and hospital stays. The family lived in a bubble during thethree years of Jamie's sickness and friendships weren't part of their life during this time.During that period of time, Jamie, oblivious to the fact that he had cancer, embraced life withhis family and was a happy child, fortunately suffering little from the side effects ofchemotherapy or any complications to do with the illness or treatments. It was easy forLindsay and Jack to find meaning during that time, especially because Jamie was such apowerful presence.50Unsurprisingly, due to the nature of having a child with a cancer that comes with a30% chance of survival, these were also very emotionally and psychologically stressful yearsfor Lindsay and Jack. Lindsay, someone who copes with her emotions by "letting it all out,"felt blessed to share her feelings and worries with her mother. Jack, on the other hand, wasless available to have emotional conversations with as he is an individual who prefers to keephis feelings inside. He also was working hard to remain hopeful that Jamie would survive andresisted any ideas that countered that belief. Jack and Lindsay's hope and belief that Jamiewould live was central to their parenting. This hope allowed them to stay positive andfocused, giving them strength as individuals and as a couple. Indeed, they never let go ofhope until the day that Jamie died.On Halloween day in 2003, their doctor at British Columbia Children's Hospital toldJamie's parents that nothing more could be done . Jamie's cancer had gone into remission acouple of times, but with this relapse the cancer had spread into his spine. Jack and Lindsaywere told that efforts would now be made to manage Jamie's pain effectively but that activetreatments to cure the cancer would no longer be offered. For the most part, the couple gotalong well enduring the ups and downs of Jamie's sickness, but they had some difficultconversations around decision-making. For instance, Lindsay, more open to alternativemedicine and willing to take the risks that come along with some of those options, wasinterested in exploring a cancer clinic in Texas. Jack was skeptical about this particularclinic but, respecting Lindsay's opinion and interests, was willing to research this possibility.Ultimately, he decided that it was too big of a risk and so the family stayed put . Despitehaving opposing perspectives on alternative therapies, Lindsay and Jack always agreed upon51insuring that Jamie was in high spirits. Within reason, they also clearly wanted to dowhatever they could to keep him alive.It is impossible to emphasize enough how important the role hope played in theirlives. Even though the doctors told the couple that the focus would be pain managementnow, and not curative treatment, and they encouraged Lindsay and Jack to go to CanuckPlace, a Vancouver children's hospice, the inevitably of Jamie's demise was not thatapparent to them. They were not paying conscious attention to the signs that death was near.Jamie had two stays at Canuck Place. There was a brief visit shortly after that Halloweenappointment and again for about a month over December. In January, Jack and Lindsay tookJamie home and took care of him there, with minimal help from home care nurses, untilMarch 2004. On March 1 at 9 in the morning, Jamie, lying in Jack and Lindsay's bed, wherehe slept with them, told his mom, "Mommy, I love you" and then he closed his eyes andpeacefully, quietly died. They didn't expect that he would die that day . Even their doctor,who had visited Jamie that morning at Sam, believed that he had more time. But it couldn'thave happened in a better way with both Jack and Lindsay there with him and with eachother to share in Jamie's last moments alive.It has now been over two years since Jamie died but his presence is strongly felt bythe whole family, including Dawn who talks about her deceased brother. Although whenJamie was diagnosed with cancer life became very different and required Lindsay and Jack tomake adjustments, it has been his death that has resulted in a need for major adaptations forthe couple. Since Jamie's death, their relationship has encountered more stress than it didduring his illness. Both Lindsay and Jack think that their relationship was strong prior toJamie's sickness, during it, and believe it is just as robust now but they acknowledge that52they have been dealing with certain difficulties since their son died. For instance, Lindsaybenefited greatly from having her mom around during the years of Jamie's illness; she servedas an outlet for all of Lindsay's emotions and now Jack is the one she expresses her feelingsto. She is aware that her emotional needs have changed since Jamie's illness and death, thatshe needs more emotional intimacy and accessibility with Jack.The couple is making slow progress in learning how to communicate with each otherin a way that is satisfying and comfortable for both of them. Jack believes that he might bemore of an optimistic person than Lindsay and that what they choose to discuss might be areflection of this. One topic that is always very easy for them to talk about, though, is Jamie.This process of bereavement has been filled with a need to reevaluate their individual,couple, and family goals. Tension has emerged in Lindsay and Jack's relationship becauseJack is very consumed with work, something that was not true when Jamie was sick and theywere caring for him. Because he is in charge of the company, Jack finds that his workdemands a lot of time and energy and that it is challenging not to bring it home with him.Lindsay reminisces about the years when Jack was more available to participate in familylife. Jack has a lot more going on external to family life compared to Lindsay . In addition towork, his schedule includes regular hockey team practices and games. This has had animpact on Lindsay: She misses what family life was like when Jamie was still alive and theywere all always together and she also recognizes that she needs to find fulfilling activities toengage in like Jack has so that she doesn't resent him. Jack emphasizes that it puts morepressure on the partnership when neither, or only one, partner, has many outside sources theycan use for support.53This has been a period of reflection. Lindsay notices that it was easier for her to haveaccess to the "truths" or "lessons" of life when they were in the midst of Jamie's illness.Jack and Lindsay realize that shortly after Jamie's death it was more effortless to not getruffled by trivial issues and they felt inspired to live life differently, more conscious of theimportant things. Yet after awhile they both found themselves back in day to day life gettingwrapped up in little things again. Lindsay feels like she was more inspired back then tocreate and find meaning and purpose and now her goal is to get back into that headspace.Jack and Lindsay have been together for 21 years and they are still in love. Theysurvived Jamie's illness and death together, as a team, and are adapting to life without him.Although their relationship is encountering new stresses and challenges, as a consequence ofthese circumstances, they are characteristically up for the task. When they look back on theirrelationship and what they've been through together, it is clear that their partnership hasevolved andis evolving and what's in store for them in the future is not yet known . What isknown is that they are just as close as they ever were and they are committed to honoringJamie by living life the way he did: embracing it wholeheartedly with high spirits.54ANNIE AND RALPHRalph telephoned me about the study after receiving the letter of invitation. Wetalked a couple times on the phone before I met with him and Annie at their home. Heshared a lot with me on the phone about his perceptions of Canuck Place, challenges inhaving a child with Duchenne's muscular dystrophy, and stated that he and Annie wanted tohelp other parents who are care-giving for a child with this disease.The interview was about 1.5 hours. I was moved by Annie and Ralph as soon as Imet them. They were immediately forthcoming with their story?launching right into it andnot holding back. They were passionate and both allowed their emotions to surface . Ienjoyed watching them interact with each other; a playful dynamic with a clear deep love andappreciation for one another. I was especially captivated by Ralph's affection towardsAnnie. Annie and Ralph are in their early 40s and Annie works with developmentallydisabled individuals and Ralph is a truck driver.55We Are Each Other's WorldGive Annie and Ralph a challenge and they're up for it?as long as they get to fighttogether. For this couple who began dating 21 years ago, life together has never been shortof difficulties but as Annie states, "we could not have a pot to piss in or a window to throw itout of' and, Ralph, finishing Annie's sentence, "that would just give us a reason to fightharder." Neither the type to take the back-seat in life, Annie and Ralph not only discussedhaving kids right off the bat, but put words into action. The couple welcomed Justin intotheir world on February 8, 1987 and Annie and Ralph got married in August 1988. Thingsdid not slow down or get simpler then for the young family but, as feared, when Justin wastwo years old he was diagnosed with muscular dystrophy, a hereditary disease Annie knewall too well about as her brother, Lucas, suffered from it.In addition to the full-time care-giving that muscular dystrophy calls for, Annie andRalph were confronted with the knowledge that their son had a fatal condition that would getprogressively worse and end in death likely during Justin's teenage years or early adulthood.Instead of dwelling on the devastating prognosis, Annie and Ralph focused on giving Justin anormal life and trekked on with the hope that he would exceed the expectations of the doctorsand live longer than Lucas who died at 16. They also were determined to never let their sonknow the severity of his condition (a decision that proved to cause conflict with doctors).Three years after Justin was born, along came Rachel and Annie and Ralph had twodistinct roles and job descriptions both requiring an abundance of energy and time. Anniededicated nearly 24 hours a day, 7 days a week to caring for Justin who, as time went on,needed more attention, procedures, and doctors' appointments. Ralph, making sure that thefamily could eat, was out on the road 6 days a week truck-driving. Although they often were56not physically in the same place, Annie and Ralph's minds were always on the same thing:Justin. Even though the parents wanted to have equal involvement with Rachel as they didwith Justin, it was challenging to do so given his needs. Not being able to give Rachel moretime and energy, as well as more normalcy in her life, induced guilt for both parents. At onepoint, Ralph and Annie even told Rachel that when Justin died it would be her turn.Despite the occasional argument about Annie wishing that Ralph could be aroundmore to help out, the couple drew strength from each other while coping with the stresses ofhaving a disabled son. Annie and Ralph were each other's main sources of support . Indeed,Ralph was inspired by Annie. He was amazed by her commitment to Justin's care andacceptance of the circumstances; for instance, never asking Ralph to quit his job or anyone tohelp her out with Justin.While Ralph considers himself the "coolheaded one," Annie dealt with the emotionsthat accompanied Justin's condition by yelling at people and releasing her negative feelingsthat way. Fortunately, friends and family understood not to take her outbursts personally andAnnie's "bullheadedness," her tough attitude, is what kept her going. In bed at night, though,the mother, the caregiver, the wife was able to break down and cry sometimes in the lovingarms of Ralph. Justin had attitude too ; a perfectionist like his mother, he was someone wholiked to be in control and lived life full throttle, not wanting anyone to get in his way, fromthe moment he woke up in the morning until bedtime.Having been the sibling of someone who lived with muscular dystrophy and diedfrom it, Annie was acutely aware of what would happen with Justin and of the painassociated with loving and losing someone with the disease . Even though both Annie andRalph knew that Justin ultimately would not survive and defeat the disease, they rarely57discussed that reality. Instead, their conversations?typically had over coffee when both oftheir children were in bed?were about problem-solving and what their plan of attack wouldbe if certain things happened. How Annie's parents dealt with Lucas's muscular dystrophyand Lucas's responses to treatments provided examples for what Annie and Ralph wouldwant to do but more often did not want to do in taking care of Justin. They positionedthemselves as advocates for not only their son but other children with muscular dystrophyand Ralph and Annie were always in agreement about the small and big decisions withrespect to Justin's treatment, including, especially, that Justin would die at home.As is the case with children who have muscular dystrophy, by the age of 10, Justin'sentire body was getting weaker and weaker. When Justin was 11 years old, he nearly died atthe hospital. His heart had stopped beating and the doctors revived him . It was at thatmoment that Annie realized that her dream for her son to live forever, or at least a long life,was not realistic. Ralph and Annie asked Justin shortly after this traumatic experience at thehospital if he would want to be resuscitated if anything were to ever happen to him in thefuture. His answer was a definite "no."In 2000, Ralph and Annie were told by Justin's doctor that their son likely had about6 months left. In spite of that information, Ralph and Annie still believed that their sonwould live at least as long, if not longer, than Annie's brother who died at 16 . Perhaps denialwas playing a role here too; disbelief that their vibrant son would succumb so quickly to hisdisease. Yet on September 10, 2001, at age 14, Justin passed away at home with both hisparents by his side.For Annie, losing Justin, was saying goodbye to the person she was for 14 years ; tothe routines and to the emotions that came with being his mother, caregiver, advocate. Her58day to day life dramatically changed whereas Ralph's did not, thus creating some resentmenton Annie's part. While Annie's grief is always there with her, she is also appreciating hownormal life is now. With a sliver of guilt, she acknowledges how much she enjoys being ableto sleep the whole night now?something that was impossible during Justin's life . Still thereis continuity in how Annie's life was when Justin was still alive and how it is now becauseshe has chosen to work with developmentally disabled individuals.Annie's sense of loss has been greater; although, with that said, Annie and Ralph'sgrief is equally tremendous and painful and not a day goes by without Ralph thinking ofJustin. Indeed, the bond that each Ralph and Annie continue to have with their son bindsthem. Ralph's awe of his wife and her strength persists and he says with passion that if hehad to do this all over again he would as long as Annie was by his side. He says that "she ishis world." They are in agreement that they have definitely grown as a couple after goingthrough caring for Justin and being bereaved by his death. As Annie says, "they are still inthe honeymoon stage" in the sense that, as a couple, they keep encountering new challengesand chances to prove their capacity to shine together. Perhaps it is Justin's energy and lovefor life that continues to push them to live fully and wholeheartedly.59GAIL AND ANDREWGail e-mailed me after receiving the letter of invitation for the project and said that ithad been on her and Andrew's pile of things to do and that they would be delighted to talkabout their experiences in palliative care and bereavement after losing their daughter 9 yearsprior at Canuck Place. She wrote that her and Andrew would be happy to have me over totheir home.I interviewed the couple at their home and was impressed by both of their self-awareness and insightfulness. The interview was about 1.5 hours. There was a cutechemistry between the two of them that spoke to their love and also, I thought, to theircomfort with each other after over twenty years of marriage and living through many bigexperiences together. I heard many stories during that interview and was moved by thecontent and the dance I saw between Gail and Andrew as they told these stories.Gail and Andrew are both in their early forties. Andrew works for a telephonecompany and Gail works in an administrative role at a hospital.60Bonded by a Common Faith, a Common LoveGail and Andrew came of age together. Both growing up in small towns, theymarried when she was 19 and he 20 and from there they moved from one remote communityto another for Andrew's work until they finally relocated to a big city . They were a happycouple who liked to do similar things and were also deeply united by their common faith?they are both Jehovah's Witnesses. In 1989, after nearly 6 years of marriage, Gail,unexpectedly, got pregnant and on June 20,1989, Elizabeth came into their lives. Andrewhad thought that he would have "preferred a sports car" but the reality was that when he andGail became parents, he realized how much he loved children. In the beginning ofElizabeth's life, neither parent had any idea what was in store for them.When Elizabeth was 8 months old, Gail began noticing that something was wrongwith their daughter. There was nothing "specific" but she would just watch her daughter playor interact with her and something told Gail that Elizabeth wasn't developing the way anormal baby would. It was a gut feeling and Gail also found herself comparing Elizabeth totheir friend's daughter who was 4 months younger and seemed miles ahead . Being aconcerned mom, Gail took Elizabeth to the doctor and he said not to worry and she was justbeing a typical anxious mom. Yet when Elizabeth was two, she started having seizures andshortly after Elizabeth's sister, Naomi, was born in December 1992 she went from having 10seizures a day to a hundred. It wasn't long until she was having thousands of seizures eachday. At that point, the family moved into children's hospital for 6 months to have Elizabethtested. After a couple years of not knowing, when Elizabeth was 4, Andrew and Gail weredelivered the news. Gail was leaving the hospital with Elizabeth and Naomi after Naomi hadsome dental work and their doctor came running towards her excitedly saying, "We just got61the results back and she has a progressive neurological disease and someone will call you."Gail somehow made it home and after conveying the news to Andrew, the two of them sataround in shock. They weren't sure then what that diagnosis meant.Andrew and Gail were even more flummoxed when they heard the more specificdiagnosis for Elizabeth: Neuronal Ceroid Lipofuscinoses, also known as Batten Disease. Thediagnosis that Gail feared. The accompanying prognosis was that Elizabeth would notsurvive this; her parents knew that at some point it would be just them and Naomi. Shortlyafter receiving the diagnosis, the family was in the hospital for a few months?a period thatwas like a black hole, a blur for Gail. It was during this time that Andrew and Gail became"ships passing in the night" in multiple ways. Gail did the bulk of the care-giving at thehospital while Andrew worked and they mostly connected by frequent telephone calls. Theywere also on opposite schedules with sleeping and eating which made it difficult for them toconnect as a couple. Andrew recalls one date in the years of Elizabeth's life where they wereable to not discuss their daughters for 10 minutes and that was impressive to them. Not onlywere they often physically not in the same place, Andrew and Gail grieved in different waysand separately.Gail, having been through grief associated with her mom getting diagnosed with alife-threatening illness a number of years prior, knew that she needed to cope with her griefalone. She would wake up in the middle of the night, go into the basement and bawl . It wasnatural for Gail to do a lot of this anticipatory grieving for Elizabeth; often the emotions shewas experiencing were expressed by journaling. Initially, Andrew's different way ofresponding to the stresses and loss associated with their daughter's illness provoked Gail.Andrew had a tendency to sleep a lot and used work as an escape. However, when Gail took62a course at the hospital for parents coping with chronically ill children she was able torecognize and accept that Andrew and her dealt with their emotions differently. Both wereable to accommodate the other's style from there on.Despite acknowledging and processing their sense of loss over what they knew wouldbe a challenging and short life for Elizabeth, both Andrew and Gail took a long time to fullyaccept that their daughter would die from her illness. Perhaps it was easy, on some levels, toignore or deny the inevitable because Elizabeth had good quality of life for years and theparents were dealing with present concerns. They were both so involved in actively caringfor her and Naomi and interacting and receiving support from a large team of healthprofessionals and friends. A significant portion of emotional assistance also came from theirspiritual family who Gail, Andrew, and Naomi had meetings with three times a week.Indeed, this external support was like a blanket for the couple and family: protecting themand helping them along. For instance, Elizabeth's therapist made sure to inquire about howGail and Andrew were doing and what they needed; a nurse, who they affectionately callMrs. Doubtfire, was there offering comfort and a pair of ears to Andrew in the long nightsspent at the hospital; and Elizabeth's preschool teacher came into their home 10 hours a weekand helped work on the relationship between Elizabeth and Naomi.In the fall of 1995, the family felt especially grateful because not only did they begingetting much-needed financial help from the government for home care but Canuck Place,the Vancouver children's hospice, opened its doors . Canuck Place became a home awayfrom home. Many of the nurses were nurses from the ward Elizabeth was on at the hospitaland the social worker had worked with the family before. From the time they stepped intoCanuck Place they felt surrounded by love and caring?"a place like that becomes a home63very quickly." Events around this time did thrust Gail and Andrew to admit to themselvesand to each other that Elizabeth would be dying. There was the time that Elizabeth was atthe hospital crying and when Gail asked her if she wanted to go home, Elizabeth smiled.Gail knew at that moment that she, as Elizabeth's mother, had to respect that her daughterwas saying "no more hospital." Gail went home and told Andrew that they wouldn't bereturning to the hospital and would rely on Canuck Place's respite and palliative care fromthereon. The couple also were faced with the reality of their daughter's death when theywere required to sign a do not resuscitate order at Canuck Place when they began goingthere. The most profound foreshadowing event was in October 1996 when Elizabeth nearlydied at Canuck Place and the nurse encouraged Gail and Andrew to make their calls.Managing the practical and emotional issues surrounding caring for Elizabeth andpreparing for her death was a family affair. Despite Naomi's young age, Andrew and Gailinvolved her entirely in decision-making about her sister's care. Decisions such as if therewould be a viewing, if Elizabeth would be cremated or buried without cremation, if shewould die at home or Canuck Place were made by having consensus amongst the three ofthem. The parents were not solely thinking about how they were coping and would adjust tolife without Elizabeth but about how Naomi would be when it was just the three of them.Focusing on Naomi also helped normalize life for the couple. In November 1996, the threeof them went away for a week to the island while Elizabeth stayed at Canuck Place in thecare of a nurse. Gail and Andrew also remember weekends where they would leaveElizabeth at Canuck Place and would experience a multitude of emotions, includinggiddiness and excitement related to not having to tend to their daughter. These feelings were64usually followed by heart-wrenching guilt and the couple talked with each other about themixed emotions and also to a therapist.In the summer of 1997, it was clear to Naomi, Gail, and Andrew that Elizabeth wasdying. When they drove to Canuck Place in early September, the parents had a strong sensethat this would be their last drive there and Elizabeth would not be returning home. It was onSeptember 21St, while Gail and Andrew were playing cards with two good friends of theirs inElizabeth's room at Canuck Place that Elizabeth passed away while holding hands with hermom. It was late at night and the fact that Gail and Andrew were playing cards while theirdaughter died was significant as they were playing cards while they were waiting forElizabeth to be born.It has been 9 years since Elizabeth passed away and, as a couple, Gail and Andrewhave encountered their share of challenges and also growth. Because Gail did a lot moreanticipatory grieving then Andrew, they were in different places of grieving for a long time.The largest test of their relationship came shortly after the family returned from a summer'strip to Europe two years after Elizabeth died. Andrew was yearning for another child andGail, although feeling similarly, strongly believed that it was not a good idea because of the25% chance that this next child could inherit the disease Elizabeth died from. Gail also feltthat their marriage would not survive another experience like what they had been through andAndrew did agree with that. Andrew became distant after this conversation and defaultedinto sleeping a lot and being angry. It took 3 years until he revealed to his wife the impactthat the conversation had on him. This was around the five year mark after Elizabeth's death.They survived these trying times by continuing to do things together as a couple and as afamily. One significant thing they did was move houses which brought them geographically65closer to good friends. Re-connecting with friends and starting fresh in a new place helpedGail and Andrew begin to sort things out. Gail had promised Elizabeth that after five years,they would be okay and they are.Even though they still have arguments with each other, Andrew and Gail believe theyhave become more patient and understanding with one another and that they have definitelygrown together. Being members of their spiritual family and learning to speak sign languagetogether shortly after their daughter's death has also assisted the couple in staying strongtogether by making meaning and keeping things new. Their belief that Elizabeth is "in God'smemory" and one day will be resurrected back to earth, to a beautiful paradise, also keepsthem moving along with positive thoughts. Watching and caring for outgoing Naomi alsokeeps their spirits up. This family has been through devastating times but have remained aunited, solid team.66SUMEET AND RANASumeet telephoned me after receiving the letter of invitation for the study and saidthat he and Rana would be honored to participate. In the 6 years since they lost their son, andduring his illness, they have been involved with many people, including the media, tellingtheir story. It was clear, on the telephone and while interviewing them, that there is a senseof urgency to continue their son's legacy.I heard Rana and Sumeet's story at their home . The interview lasted 3 hours andinvolved watching two videotapes of their son that were shot while he was still alive. I feltlike I had entered a different world while listening to this couple talk about their experiences.I was touched by the clear empathy they had for each other and my perception that they weresurvivors together.Rana and Sumeet are in their forties and they are both on disability pension and notworking. Sumeet had been an accountant and Rana had worked in a plastics factory .67We Have Each Other on This IslandIn 1984, atop a mountain, Sumeet and Rana decided that they would spend their livestogether. They had met a few years prior, through relatives, while Sumeet was visitingCanada from his homeland Zimbabwe. However, he wasn't ready for marriage then but didput her name in his "black book." When the timing was right, though, the couple married,lived in Zimbabwe for a year and then returned to British Columbia. Rana and Sumeetpurchased a large house and their desire was to fill it with many children. Each had manysiblings and they hoped to carry on this tradition with their own family. Unbeknownst to thecouple, this dream would dissolve within a couple of years after their first child's birth.Darren was born in 1991. He was a healthy, happy baby who was achieving all of theregular developmental milestones: walking, running, talking. Yet, when Darren was about2.5 years old, strange signs, such as difficulty with walking, bumping into furniture, andfalling, startled Sumeet and Rana and their child was soon admitted to British ColumbiaChildren's Hospital (BCCH) for testing . They lived at the hospital for 6 weeks and Darrenwas put through an extensive battery of tests. Immediately, the doctors knew that it was ametabolic disorder because of certain signs, but it took an arduous process to determinewhich one. Week after week, Sumeet and Rana were hit with increasingly bad news abouttheir son. At first, it was "Darren is going to lose his eye-sight," the next week it was, "Ohwe're afraid he is not going to be able to walk," and finally, at the last meeting, "Your child'ssurvival is going to be 12 months." Darren was diagnosed with a very rare metabolic diseasecalled Multiple Sulfatase Deficiency. At the time, he was the only child in Canada with theillness and one of about a dozen in the world.68Rapid changes took place in Darren's health shortly after the diagnosis?as thedoctors predicted. It felt like going down a slope fast for Sumeet and Rana : They werejuggling the grief and anxiety which accompany having a dying child and going through thehuge "learning curve" of caring for their son appropriately. In a span of only 3-4 months,their son required tube-feeding, became blind and was completely paralyzed, and,unfortunately, it was an understatement to say that support from health care professionalswas inadequate, especially during the first two years. Darren's health issues were so all-encompassing ?like putting out fires all the time, all over the place?that everything,including the couple's relationship and Rana and Sumeet's individualemotional/psychological difficulties, became secondary. All of their energy was spent tryingto figure out what was happening to their dying child, the last thing they were worried aboutwas "us."A visit with their family doctor soon after Darren's diagnosis, however, served tohighlight that the couple relationship required attending to. Their doctor's advice was:"Whatever you do make sure that your wife and you can stay together because that's going tobe the glue of this whole journey." A psychologist at BCCH, who worked with them fromdiagnosis and throughout Darren's illness, also helped remind them of their individual andcouple needs and to take care of themselves.It was as though Darren, Sumeet, and Rana were inhabiting an island far away fromnormal reality. Shortly after Darren was diagnosed, Sumeet and Rana both made decisions toleave their jobs. Sumeet was an accountant and Rana worked at a plastics factory . Theybegan relying on the little money that comes from disability pensions. Rana and Sumeetfound that their views on life and what is meaningful began shifting as they travelled with69Darren on this journey. Their approach to living became simpler . Living essentially inisolation, their perspectives and priorities began changing. Comparing themselves to othercouples they knew who were into fashion, going to the movies and concerned with materialwealth, they found they were learning to survive by having less and simplifying. The couplediscovered that. they came to value dealing with the issues at hand and being efficient at theirduties. They began recognizing new strengths, including "breaking out of their shells ."They both became more vocal about what they needed. One thing they needed, andexpressed, was related to setting boundaries with other family members about how often theycould visit. They also both became advocates for their child, and other children with specialneeds, in dealing with the Ministry of Children and Families.The couple found that as they were coping with caring for their dying child, theytook pleasure in connecting deeply with others who were walking similarly difficult paths.The parent support group at Canuck Place, the children's hospice, offered the chance tocommune with others who were living on similar "islands." In fact, it was at Canuck Placewhere the couple realized that they were not bearing the "largest cross" and that other parentshad even more burdens than them. The hospice also offered the couple continued supportand care?anchoring during their journey.Given the time and energy requirements of taking care of their son, Rana and Sumeetoften did not have time for important conversations. Although they never explicitly spokeabout it with each other, Sumeet and Rana had both embarked on a similar and profoundspiritual journey while care-giving for their son. They derived energy for care-giving fromtheir Hindu faith. At some point the focus for both of them changed from feeling burdenedby caring for a dying child to seeing it as an opportunity to care for "God's child ." They70never questioned, "Why us?" The couple viewed their son as a teacher and they wereprepared to learn as much as possible about life and love as his students. One lesson was toalways have a peaceful home. Darren could detect tension very easily and this pushed themto be peaceful with each other at all times in his presence. Indeed, a house rule that wasenforced with anyone who came over, was to leave problems and negativity outside.Another lesson learned by the couple was figuring out how to communicate better with eachother and become better listeners. This extended to Darren's care: To look after Darren'sneeds, Sumeet and Rana had to be able to pick up on subtleties in what he wascommunicating especially since he could not speak.Despite what the doctors predicted, Darren survived much longer than a year.However, at the age of 10, on May 18, 2001, Darren died after a rough period where it wasobvious that his health was deteriorating. With his mother and father by his side, Darren diedon a Friday morning? triggering memories of his birth day which was a Friday as well. Asplanned, Rana was at his side, along with Sumeet. This was significant as it took Rana upuntil that week to accept the reality that Darren would die young. Eerily, she had dreamtprior to Darren's diagnosis that he was going blind and wouldn't live much longer . Sherealized it was God readying her for what reality was going to be; still, for a long time, thereality was nearly too much to bare. Sumeet accepted this eventuality shortly after Darren'sdiagnosis and found that he was less emotionally labile than his wife.Following Darren's death, Rana and Sumeet commenced a new journey that hasinvolved tremendous suffering and growth. There have been huge costs to every area of theirlives and the 7.5 years of a "treadmill existence" during their child's illness has made itimpossible for either of them to go back to work and resulted in posttraumatic stress disorder71for both Rana and Sumeet. Similar to their existence while Darren was still alive, Sumeetand Rana still feel they are living in a "different world" and adjusting to normal life has beendifficult. One factor that has made it especially challenging in adjusting to bereavement hasbeen the lack of support from the health care system. However this is something that thecouple has learned to expect as it was certainly true during Darren's life. Yet they havebenefited from the continued supportive friendships with people who Darren drew into theirlives. This is clearly a time of recovery and also getting reacquainted to each other.In addition to their shared connection with Darren and having lived through this life-altering experience together, Rana and Sumeet credit their Hindu faith with keeping themtogether as a couple. It is easy for them to say that they've grown as a couple. Their journeywith Darren expanded who they are as individuals and as partners: it taught them more abouteach other and about themselves. Fortunately they have each other, someone who trulyunderstands what they have been through. The videotapes and photographs they have of thefamily, created while Darren was alive, also serve to validate what they have survived andcontribute to meaning-making. The couple's ability to find the joy and hope in the pain ofwhat they've been through has also been part of their bereavement process and a testament toDarren's teachings . As they live in this different world with each other, Sumeet and Ranacontinue moving forward with Darren as the captain of their ship and carrying the gifts of hismany lessons.72ThemesNarrative of the Interview ProcessI would say that the evaluation piece became part of the dialogue after the couplesdivulged the main body of the story with the embedded details; these could also becharacterized as reflections or assigning new or already established meanings to thenarratives just told. As individuals, considering their intrapersonal and interpersonal story,the participants remarked on how they have changed and how this event (having a child withan illness and having that child die) has modified how they live and how they view life, theirperception of relationships with family and friends, and the important reasons to let theirstory be heard and acknowledged by myself and others.Themes that EmergedThe purpose of the project was to document, describe, and understand the livedexperiences of couples who have stayed together throughout their child's illness and death,and are now on the journey of bereavement. The objective of the research was to answer thisquestion: What are the narratives of intact bereaved couples whose children have died afterreceiving palliative care for a life-limiting illness? This question was front and center when Ianalyzed the content of the 5 couples' stories. The five themes that arose when reading andrereading the texts from the interviews were: (1) the last thing you worry about are issuesabout us, (2) accommodating one another's coping, (3) recognizing sources of support andlimitations, (4) two souls against the world, and (5) we have a common bond: lessons andlegacy of the child. Following, I elaborate on each theme and provide excerpts from thecouple interviews.73The Last Thing You Worry About Are Issues About UsIn each of the 5 couples' stories, the theme of putting the relationship on hold duringtheir child's life arose. Several of the couples expressed that they were on the journey as afamily and after their child's death, they re-encountered their partner in the couple sphereagain after what felt like a long time. Gail, wife to Andrew and mother of Elizabeth, capturedthis sentiment well saying, that after their child's diagnosis "we were ships passing in thenight I think from that point on." Don, husband to Christine and father of Michael, expressedthat all of the attention was directed at their son and "it just wasn't about us and ourexpectations." Christine furthered the discussion of the intimate relationship falling down thepriority list saying "It's hard enough with a newborn to find time for yourselves . Just all of asudden it's a hundred times worse than usual and you grow apart a little bit and all you'retalking about all the time is [your ill child]." Andrew, in discussing his relationship withGail, articulated anecdotal evidence of a similar experience to Don and Christine: "Iremember we went out for dinner once without the kids. And we actually didn't talk aboutthe kids for a matter of ten minutes. We did well. We survived ten minutes without talkingabout the kids and what was happening." Annie and Ralph only had quality couple time anddates "once in a blue moon" typically after the encouragement of friends who were willing tobaby-sit; lack of money and the rarity of being in the same place at the same time werebarriers.In the case of Sumeet and Rana, they did not "have time to think about us .. _becauseall of your energy and effort is spent on trying to figure out what is happening to your dyingchild the last thing you worry about is the other issues about the us." Creating an image thatis possibly representative of the life of parent caregivers for a child with many special needs,74Sumeet remarked that the commitment "is big. Very big. It's a treadmill existence everyday." In reviewing all of the narratives, it became clear that in situations where parents areconcerned about their dying child, it is quite understandable that they are not focused on theme or the we. This appeared to be an approach to coping for the couples as it was a way offocusing on the most pressing issues and not be distracted by subordinate concerns.Accommodating One Another's CopingWith this theme, coping encompasses the processes the partners engaged in duringtheir child's illness and how they currently are managing the emotions in bereavement.Although all of the couples had different circumstances and coped in diverse ways, all of thenarratives had this commonality: the individuals in each dyad coped differently than theirpartner yet they were all able to accommodate one another's coping needs. They were alsoable to give each other permission to be in different stages and places as well in dealing withanticipatory and current grief. The men in the study tended to be problem-solvers/action-oriented and the women were typically more emotionally expressive. Despite this difference,all of the partners all seemed to have an implicit agreement not to discuss their child'spossible or pending death. Gail, Andrew's wife and mother to Elizabeth, found thataccepting her and Andrew's different coping styles was helpful:I took this course and what it did is it helped me realize that we coped in verydifferent ways. He would go off to work, he could leave, I would write and I wouldwork in my garden. Gardening became very important to me because I couldn't leavethe house. Even when we had caregivers they had to stay so I would get out in theyard and he would sleep . Sleep was a big thing for him. And it used to just and it still75infuriates me. At least at that point, I was able to step back and say ok that's how hecopes, that's how he's grieving.Lindsay, Jack's wife and Jamie's mother, similarly recognized that taking care of heremotional needs, often involving long conversations with her supportive mother, and notexpecting her husband to change his communication style was helpful for her and therelationship. Annie and Ralph differed in that Ralph was the more "laidback one" and Anniecoped "pretty much with yelling. I'm a perfectionist and bullheaded and so anybody thatcrossed me would get yelled out...I would just explode on people. And I still do." Ralphcommented that they did indeed cope in "completely different ways" and not only acceptedhis wife's coping style but was amazed by it:Ummm I don't know how she coped . To this day I don't know how she did it . I reallyreally don't . I mean I'm amazed at how she dealt with this. Because most couples thehusband's home at 5 o'clock . Me I was gone. So this was left to her and I don't, I stillto this day don't know how she did this on her own ....She never asked for help shenever told me I had to quit my job and do something different. She accepted it theway it was. Well it amazes me . It totally amazes me. To this day if anyone says to mehow did you do it. I say well I didn't do it, my wife did it . I'm blown away byit....We would go to bed and she would cry, "I'm just so tired I'm worn out ." I wasdoing as much as I could when I was home but there were 6 days a week that she wason her own. Not once did she let the kids see her cry. Let the kids see she was tired.Despite managing their feelings differently, it was clear in the narratives of some ofthe couples that the partners in the relationship were in tune emotionally, possibly allowingfor greater acceptance and empathy. Don and Christine recalled a family road trip after their76son died. They told a story of driving along and hearing a song on the radio and it was a"happy family moment" but soon after, Christine began crying because the absence ofMichael was so pronounced. Christine said about Don:At least we understand how it's like . Like he never gets after me for wrecking ahappy moment and I don't ever do that either, like we're just both there.Recognizing Sources of Support and LimitationsThe topic of support for each of the couples was emotionally laden. Before and afterthe death of their children, it emerged in the couples' narratives that external support was notconsistent. Insufficient or removal of support as well as resources that strengthened them asindividuals and as partners surfaced as vital themes across the couples' narratives. Support inthis context can be conceptualized as both something the individual parents and couplereceived externally or from within themselves or their relationship.Canuck Place, the Vancouver children's hospice, was identified by all of the couplesas providing enormous support. It was also obvious that Canuck Place was for all of thecouples, and for some, continues to be, a special place of connecting to other parents whotruly understand the emotions and experiences of have a dying child or to be bereaved. Allof the couples spoke of the importance of having their experience validated and normalizedby other parents undergoing similar journeys. Jack, Jamie's father and Lindsay's partner,said that through building relationships with others in the grief support group ran out ofCanuck Place he and Lindsay "have're not the only one who has gone throughthis." Receiving support also seemed to increase their empathy for others and gave them agreater understanding of what grieving parents might need. Jack said : "I think what yourealize is that people don't mind you recognizing that they're maybe going through a tough77time." For Lindsay and Jack, the support group at Canuck Place also helped them be hopefulwhile Jamie was still alive. Sumeet, father of Darren and husband to Rana, found that it wasat Canuck Place that he and his wife realized that they didn't have the "biggest cross tobear;" which was humbling and heightened their interest in not only advocating for theirfamily but others who were in a similar situation.Sumeet described Canuck Place metaphorically capturing the sense of isolation andneeded connection experienced by many of the couples saying that without Canuck Place"being born it would be hard for people to survive alone on the island. If anything, CanuckPlace brought all the people off the island and put them in a central place."Three of the couples took advantage of the respite from care-giving that Canuck Placeoffered; clearly the hospice understood for them the need to take breaks from this physicallyand emotionally exhausting duty. Christine and Don went on an anniversary trip whileMichael was cared for there. Gail and Andrew recall these breaks as helping them "get asense of what life would be without [their daughter]" ?helping them to begin the transitioninto bereavement. Gail spoke about the blend of excitement and guilt that accompanied tripsaway from Canuck Place while their daughter Elizabeth remained at the hospice:Well on one hand it was heart-wrenching but on the other hand, I was giddy. It washorrible and I think to this day I still have guilt. Because it was like oh oh I can have alife. We sat and we did sit and talk about that like I feel so excited I have a life andcan actually go and do things but also oh I feel so guilty. So we had a lot ofconversations about that and I talked to the therapist about that. And we had a nurseat that time who could do respite and she said you guys should go away for a week.And that was a big step. Very big and then we had a few weekends after that.78For two of the couples, spiritual beliefs and being involved with religion, was linkedto keeping the couple relationship intact. Gail and Andrew, Jehovah's Witnesses, foundcomfort and support in the 3 meetings a week with their "spiritual family." Rana and Sumeetattribute their Hindu faith as being an important factor in keeping them together.In comparison to their relationships with care-giving andlor bereaved parents, manyof the couples commented that their relationships with friends, and sometimes family, werelacking in support. It was mentioned by two of the couples that friendships ended during thistraumatic period in their lives. Jack said that "I think outside relationships factor into howmuch you need each other" and went on to discuss that a lack of external support can put astrain on the couple relationship. In their story-telling, Lindsay said, with regards to friends:[They] are not there for you when you need them. Yeah the people that you thoughtyou could lean on weren't dependable and the people you weren't expecting supportfrom, I'm sure you've heard this a lot, really came and showed their support . Yeah itwas definitely an eye-opener. To see who wanted to journey with usThree couples spoke of the need to thrust themselves into advocacy roles andproactively seek external support to properly care for their child. In each of their stories, itappeared that they transitioned from being advocates solely for their family to extendingthemselves in an attempt to help out all families suffering in similar circumstances. Andrewfound that "we [he and Gail] learned about how to assert our needs and it wasn't to demand itbut to expect it." Sumeet and Rana also expressed that as a couple they found the resourceswithin themselves to gather the help they needed. Sumeet said : "I used to be a very quietperson and after.. . going through his journey I became quite an advocate and I had to speak79up more and more and talk about issues as they were and that was a totally different side tome."Ralph and Annie, parents of Justin who had Duchenne's muscular dystrophy, foundthemselves drawing on their "bullheadedness" with health professionals and the schoolsystem on a regular basis; often feeling like they knew more about how to appropriately carefor their son than even the doctors. They shared the same "attitude" in approaching theirson's treatment and care and were able to be proactive because they had the other's support.Having their partner's support proved to enable the caregiving parents to muster up thecourage and energy to cope with the trials and tribulations associated with their child's illnessand treatment.Two Souls Against the World"Because most people can't believe that we're still together and that we're not at eachother's throats blaming each other," Ralph, Justin's father and Annie's wife, remarked.Ralph's comment illustrates a popular misperception that relationships are not resilientenough to handle extreme stress. Through holistic and content analysis, it appeared that allof the couples share this powerful experience: That the couple relationship was/is a refuge, aplace of being understood, and a source to draw strength from. This theme emerged becausein all of the couples' narratives, there was a message that all of these parents have foughthard to survive and they have done it as a team. Christine, Don's partner and mother ofMichael, expressed that their marital relationship was a zone of peacefulness in the midst ofchaos related to their son's illness and treatment and they "were like two souls against therest of the world." Likewise, Ralph expressed that he drew a lot of strength from Annie and"if you listen to her she'd say she drew it from me ...I would draw my strength from her and80that's what would keep me going and it still does." Ralph narrated that he would watchAnnie care-giving and "you'd have to be completely numb not to be inspired by someonelike that."Rana and Sumeet view themselves as having been living on an "island" away fromthe real world; they have been on a spiritually profound journey as a couple . After their sonDarren's diagnosis, they really perceived a change in the way they were approaching life andbeing in the world compared to their couple friends:It changed our perspective on a lot of issues. We were living in isolation and ourideas on certain things were very very different. We found our ideas on a lot of stuffvery very different. We found other couples were interested in fashion, going to themovies... and a lot of the other families other normal families would be concernedwith material wealth and everything else associated with it.Several other couples expressed a similar sense of being in a different world than many oftheir friends and that their partner is their best friend.A comment of Lindsay's, Jack's partner and mother of Jamie, illuminates clearly howelemental intimacy and love are in surviving tragedy:We were already very close. So I don't think it's driven us apart at all . I mean wewere saying before there are different frustrations and stresses thrown in there but weare dealing with them we are able to deal with them and know how to deal with themin a healthy way. You know directed towards each other. I think we both respect eachother and yeah and not let it interfere with our relationship.Jack added to the discussion saying, "We're still in love and we still have issues about howwe are as individuals and what we want from each other but I don't think it changed ." Three81of the couples perceived their relationship as having grown through the experience of care-giving for their child and being in bereavement. When describing posttraumatic growth, twoof the couples spoke specifically about learning more about their partner. Andrew said : "Iknow what she wants to do before she even does it. There are many things. In many ways wehave definitely grown as a couple." Gail added, "We still argue . That sorta thing. We'renormal people. We definitely have way more patience than we ever used to ." The coupleswho would not use the term `growth,' felt that their relationship was already strong buthadn't been changed by the process . Whether the couples in this study described theirrelationship as having grown or not, the couples' stories were about spousal connections thatremained intact during and after the incredible trauma.We Have a Common Bond: Lessons and Legacy of the ChildThe thread running through all of narratives were the lessons learned about life anddeath from the deceased children. The narratives disclosed contained the voices of all of thecouples' deceased children and appeared to keep these children's messages and spirits alive.What emerged in analyzing the stories was the strong?and, possibly, immortal?attachmentthe partners have to each other because of their common bond to the child. It was clearthrough hearing and analyzing the narratives, that identifying the lessons and legacies of thedeceased child were the couples' and families' way of making-meaning . Ralph, Annie'shusband and Justin's father, said, "Justin will always be part of both of us and that's the waywe look at it. I could never see us going in different directions because we have a commonbond." For Gail and Andrew, parents to Elizabeth, making-meaning of this experience notjust with each other, but with their other daughter has been an important activity because theyall lived through it. Christine, Don's wife and Michael's mom, commented that "a huge82dynamic" between her and Don is their living son. In essence, these are families who havesurvived tragedies as teams and will forever be bonded for that reason.With reference to lessons learned, Lindsay, Jack's partner and Jamie's mother, spokeof how easy it was to be positive and find purpose in life while Jamie was still alive and nowtheir goal is to find new meaning in life as a way of honoring him:Jamie embraced life. He never had a down moment....So I think that's an importantlesson to take forward. You can emphasize the negative about what's going on or thepositive.The aliveness and love for life was mentioned by Ralph as well when speaking of hisson: "This kid was full of life. From the second he got up in the morning till the second hewent to bed at night this kid was full throttle, wide open, and go. There was no slowing himdown." Justin's sense of humor, in addition to being energetic, taught Annie and Ralph tonot take anything for granted, to not feel sorry for themselves (because their son did not), andto be fighters.Darren, Rana and Sumeet's son, "has been a great teacher ." Sumeet expressed thatDarren taught him about his strengths and that Rana and he "entered the university of life bydoing this journey with Darren." He continued, "Because we picked up new life skills thatwe would not have picked up had we had a normal child. And that in itself was a gift." Oneof the skills that the couple learned was the importance of maintaining peace in their home asDarren picked up tension easily. Consistent with what all of the other parents said in thestudy about their children, Sumeet commented that his child's "spirit is very strong" and :83Every so often we see strange people dropping out of the sky and knocking on ourdoor and popping in and we often wonder why the person is here but we also knowthe answer. Darren sent them.Leaving lessons and love behind, the deceased children of the parents interviewed for thisstudy will never be forgotten. These children's lives and deaths have left permanentimpressions on their families and have clearly influenced the bereaved couples' ways ofinteracting with each other, others, and the world.84CHAPTER 5DiscussionIf I couldI'd protect you from the sadness in your eyesGive you courage in a world of compromiseYes, I wouldIf I couldI would teach you all the things I've never learnedAnd I'd help you cross the bridges that I've burnedYes, I wouldIf I couldI would try to shield your innocence from timeBut the part of life I gave you isn't mineI've watched you grow, so I could let you goIf I couldI would help you make it through the hungry yearsBut I know that I could never cry your tearsBut I would If I couldYes, If I liveIn a time and place where you don't want to beYou don't have to walk along this road with meMy yesterday won't have to be your way85If I knewI would try to change the world I brought you toAnd there isn't very much that I could doBut I would If I couldFrom Ray Charles' song "If I Could"Ray Charles so beautifully touches on a parent's painful recognition that they cannotprotect their innocent child from the struggles of life. This study explored the narratives ofcouples who could not protect their child from death. Illness tragically took these sons anddaughters away. Through the process of interviewing, transcribing, and, finally writing,these co-created stories were analyzed with the intent of learning about what spouses gothrough together as they transition from their child's diagnosis into palliative care and as theynegotiate the terrain of bereavement. The stories share common threads . Weaving thesestories together were the themes: the last thing you worry about are issues about us,accommodating one another's coping, recognizing sources of support and limitations, twosouls against the world, and we have a common bond: lessons and legacy of child. How dothe findings of this study relate to the current literature on grief, coping with loss inrelationships, and parental bereavement?The Last Thing You Worry About Are Issues About UsFor parents of children diagnosed with life-limiting conditions, grief starts early andlosses start multiplying fast. As Doka (2007) emphasizes, the current understanding of griefis that it is a "widespread reaction to loss" (p.89) and we should rid narrow views of it as86simply an emotion following the death of a loved one. Rando (as cited in Doka) furtheredthe understanding of grief by introducing the concept of anticipatory grief and its partner?anticipatory mourning. Rando defined anticipatory mourning as a response "to all the lossesencountered?past, present, and future?in the course of an illness" (Doka, p. 89). Lossescan occur in the area of relationships and several of the couples referred to losses ordisruptions to their couple relationship during their child's illness and into bereavement.When asked about their intimate relationship, some of the couples' answers supportedHagemeister and Rosenblatt's (1997) finding that sexual intimacy for bereaved parents canbe difficult, whereas for at least one couple, this part of their relationship did not seem to beimpacted. Conversely, another couple stated that their intimate life had been dramaticallyaffected by their child's illness and death.Cook (1984) in her investigation of problems parents encounter while care-giving forchildren with cancer found that couples' sex lives typically suffered during the child's illnessfor logistical reasons and because one or both partners were emotionally and physicallyexhausted. Dissimilar to Cook's finding that mothers "maternal obligations came first andspousal duties" (p.80) came second, with the fathers feeling frustrated and left out by this, allpartners in my study appeared to be in agreement that this was not the time for therelationship to be a priority. This finding was compatible with what a participant in Jonesand Neil-Urban's (2003) study of fathers of children with cancer said about his spousalrelationship, "Romance??it's not a priority . We're partners right now ...not a couple" (p.55).The loss of time and energy for the relationship, during the child's illness, was clearlypart of the experience for all five couples. Davies et al. (2004) observed that husband/wife87relationships were put under "considerable strain" (p.125) during a child's treatment for alife-limiting illness and that couples typically only had the time and energy to discusspractical concerns. This was echoed by all couples I interviewed ; they all discussed howthey were essentially forced into being in the here and now because there were so manypractical, urgent issues associated with caring for their child, that they did not have time orenergy to focus on their feelings or their relationship with each other. There also seemed tobe a psychological reason for not entering into emotionally-charged conversations. Rules, infamily system's terminology, can be explicit or implicit and they "characterize, regulate, andhelp to stabilize how-and how well-families function as a unit" (Goldberg & Goldberg, p.74). Across couples in my research there appeared to be an implicit rule not to discuss theirchild's pending or possible death.Steele's (2002) finding that couples care-giving for a child with a terminal illnesswere "so busy concentrating on the ill child" (p.426) that they neglected each other and theirmarriage, but that it was their marriage that glued the family together and allowed them tosurvive such a difficult undertaking, is the greatest parallel to what I found about the 5couples' relationships during their child's illness.Accommodating One Another's CopingPartners were introduced into the world of grief together after becoming aware thattheir child would die from his or her illness. Steele's (2002) study of families care-giving fora child with a terminal illness highlighted the large influence communication has on acouple's ability to successfully endure such a stressful experience . Steele found discrepantviews and coping styles created conflict for parents but that when they accepted theirdifferences, the divergent perspectives could be a source of strength for the marriage. This88finding is consistent with the result from my project that suggested that when partners wereable to accept and accommodate their spouses' way of dealing with stress and grief, thecouple realm was relatively easy to exist in. Steele's and my finding are also congruent withrelationship-focused coping theory (O'Brien & Delongis, 1996). Relationship-focusedcoping refers to methods that aim to preserve and assist relationships during stressful periods.From this theory's perspective, partners do not necessarily need to cope in the same ways buthave styles that complement each other. Badr (2004) adds to the discourse on relationship-focused coping by explaining that the key is for both people to be actively engaged indecision-making and problem-solving.Kamm and Vandenberg (2001) explored whether speaking about grief helped couplescope with it and feel more satisfied in their relationship. They discovered that positiveattitudes about communication resulted in lower levels of grief in the long run. Along thesame vein, Traylor, Hayslip, Kaminski, and York (2003) found that in grieving families,dyads who did not value open communication about the loss experienced greater griefconsistently for a longer period of time. Communicating openly might not even be sufficient.Riches and Dawson (1996b), in hearing the co-created narratives of bereaved couples,learned that the degree to which their married partner provided a sympathetic and uncriticalaudience to their grief impacted whether or not the participants described their marriages asstrong. These research results relate to the findings that emerged from my study in that itwas obvious that having open lines of communication and a `safe landing spot' in therelationship, helped the couples integrate their emotions into their daily life before and aftertheir child's death. Although there may have not been the time, energy, or emotional capacity89to talk about their emotions during their child's illness, knowing that they could go to theirpartner to discuss anything appeared to be helpful with all of the couples.O'Brien and Delongis (1996) also point out that beneficial strategies are usingempathy, accommodating the other person's communication style, and being able tocompromise. It was clear in all of the interviews that each individual was activelyparticipating in the experience of care-giving and now coping with bereavement; each partnerwas certainly "pulling their own weight." With respect to compromising, two of the couplesmade direct reference to learning how to compromise and the positive consequences for theirrelationship that came from that.Compatible with Jones and Neil-Urban's (2003) finding that fathers tend to use activecoping strategies, like becoming advocates or information-gatherers, the fathers in thepresent study all referred to veering towards those coping methods as well. Although, it mustbe stated that moving into advocacy roles was spoken about by both the women and men inmy study. Littlewood, Cramer, Duncan, Hoekstra, and Humphrey (1991) in their researchwith bereaved parents found that mothers tend to use "palliative, passive, comfortingthoughts and emotionally expressive styles of coping" (p.3) and the five mothersparticipating in my project validated that finding. Accepting different styles within thepartnership proved to help all of the couples to smoothly navigate the road of illness andbereavement as a team.Recognizing Sources of Support and LimitationsNarration on the topic of support was often full of emotions?helplessness,hopelessness, frustration, anger, hurt, as well as a sense of building strength and newfoundempowerment. In the literature on parent caregivers of children with life-limiting illnesses,90experiences of support, and, more frequently, lack of, contain equally emotionally complexstories. Steele (2002) learned in her study of families coping with caring for a terminally illchild that parents often do not feel supported by or that they can trust or rely on the care ofhealth professionals. This notion repeatedly came up in the interviews in my study . Twocouples emphatically talked about knowing more about their child's healthcare needs thanthe doctors and one father stated that there is no manual for parents when they begin thescary journey of caring for a child with a life-limiting condition. Couples, similar to whatwas found in Steele's and Jones and Neil-Urban's (2003) research, had to become moreresourceful because the help was not always readily accessible, visible, or there at all.Klass (2001) passionately reiterates the importance for bereaved parents to keep theirdeceased child's spirit alive and that it can be achieved by interacting with people in theircommunity who recognize the death, are mourning it, and where a continuing bond with thechild is validated and shared. Lang, Gottlieb, and Amsel (1996) found that bereaved couplesbenefit from maintaining social networks in which they are both involved. Four of thecouples expressed the importance of shared social groups, particularly groups informally orformally set up to cope with grief. The Canuck Place Parent Grief Support Group was talkedabout by three of the couples as being almost a life-preserver before and after their child'sdeath. All of the couples talked about relationships with friends and family : With somerelationships continuing to be supportive, safe spaces to deal with grief and otherrelationships ending or not being satisfactory. Similar to Cadell's (2005) finding that friendsdo not always continue support after the death of a child, two couples in my study talkedabout friendships disintegrating during and/or after their child's illness .91All of the couples spoke of the difficulty of trying to go back to "normal life" afterbecoming accustomed to the routines associated with caring for their child, and, of course,having their child alive. These routines included health care workers, such as beloved nurses,chaplains, helpful doctors, occupational therapists, psychologists, and social workers. Thisrelates to Contro, Larson, Scofield, Sourkes, and Cohen's (2004) description of thewithdrawal of support from health professionals as being a profound secondary loss. Thisshould not be minimized.Unlike Farnworth and Allen's (1996) finding that bereaved mothers do not get theunderstanding and support they need from their partners, the partners in this study, asaforementioned, were empathetic and responsive to each other's needs and knew that theother understood what they were going through. Hence, a lack of support within the couplerelationship was not an issue in this study.Two Souls Against the WorldThe father participants in Jones and Neil-Urban's (2003) study used the metaphor of"brave fighters" in describing their children with cancer. I would use, in addition to "twosouls against the world" which was created by a father in my study, the metaphor of "bravefighters" when describing the couples who shared their stories with me. In their stories, Iheard survivors' discourse and saw each couple as being compatriots who have been througha battle together; have returned from war. I have wondered : Does the stability of therelationships of the couples participating in the study create a safe space to focus on theparents' grief, and accompanying emotions, as well as deal with practical tasks? (e .g.,returning to work, raising other children).92In congruence with the Dual Process Model (DPM) of coping with bereavement(Stroebe & Schut, 1999), grief was talked about by the couples as being a dynamic processand embedded into their lives from the beginning of their child's diagnosis and now inbereavement. The DPM views coping as involving 2 parts : 1) loss-oriented coping and 2)restoration-oriented coping. Participants who have living children particularly seem tooscillate between loss-oriented coping and restoration-oriented coping. Perhaps the livingchildren serve as anchors and important reminders to the couples to be engaged in life andthe matters at hand. Nonetheless, blatant in all of the couples' stories was a sense that theirloss is at the core of their lived experience and although they may take time off grieving, asthe DPM would describe, their grief is always there. But at least they are joined by their bestfriend in coping with it?their life partner.Family systems theorists view families as exceptional at maintaining homeostasis yet,as Nadeau (1998) and Gilbert and Smart (1992) found in their respective studies of familiesdealing with loss, death can powerfully disturb a balanced system. Similar to Gilbert andSmart's discovery about couples whose children died in infancy or as fetuses, the couples inmy research went through a trajectory of instability during their child's illness to an increasedsense of stability at some point after their child's death. Several of the couples mentioned a"re-encountering" of each other in the romantic realm following their child's death but thattheir closeness to each other was consistent throughout the experience. Yet anothersimilarity to Gilbert and Smart's findings was that social support within the couplerelationship contributed to making-meaning and healing for the participants.Couples spoke of desires to reignite their passion for each other and find a "new"normal. This focus also relates to the DPM of coping with bereavement . Perhaps a child's93illness and death can destabilize a spousal relationship temporarily but the relationship willfind homeostasis again when life becomes more settled.My findings regarding the bereaved couples' relationships as being strong and ashaving formed an unbreakable bond converge with Najman, Vance, Boyle, and Embleton(1993) findings that bereaved couples and non-bereaved couples do not differ in terms ofquality of their marital relationship. Yet conversely, the results from my research did notagree with Schwab's (1992) finding that the death of a child puts a couple's relationship indanger because of major relationship problems such as, withdrawing from one another;fathers' worry and frustration over their wife's grief, wives' anger over husbands not beingemotional enough, communication difficulties, and decrease or loss in sexual intimacy. Ofcourse, though, the sampling strategy for my research likely excluded couples who werehaving major difficulties.Parents whose children are diagnosed with, and then succumb to, life-limitingillnesses go through many life-altering role and status changes. The parents in this projectdiscussed the dramatic change of being catapulted on to the care-giving parent path afterbelieving that they were going to be parents to healthy children, and then, of course, beingpushed into the world of the bereaved and existing in what Dawson and Riches (2004) callsliving on the other side of the border?what I call, "the bereaved territory." Fortunately, asthe parents in this research relocated to this territory they had their partner to turn to and be athome with.94We Have a Common Bond: Lessons and Legacy of the ChildCloseness and open communication about feelings and thoughts appear to create afertile ground for meaning-making about the child's life and legacy to occur. Gilbert (1997)asserts that families can serve the function of being a "meaning-making environment: Aplace where members are able to test their understanding of their own or their familymember's dying, the dying process itself, and what all of this means for their own experienceof life and death" (p.272). Gilbert's notion was validated by the couples . Stated bothexplicitly as well as less overfly, all couples in the research project shared that theirrelationship and the family environment was one where it was safe to grieve and reflect ontheir deceased child's life and legacy . Nadeau (1998) found that families construct meaningtogether after a loved one dies and the couples in this study are certainly doing this.Walter (1996) proposes that the purpose of grief is for the bereaved to integrate thememory of the dead into their continuing lives. Grounded in post-modernism, Waltercontends that people have a strong need to make meaning of their continually changing lifenarrative that both involves and does not involve the deceased. Through their conversations,story-sharing with each other, other family members, and friends, reviewing photos andvideotapes of their family during their child's life, engaging in meaningful activities together,and concentrating specifically on what they learned from their child about living and dying,the couples in my research are making meaning of their stories that will always involve theirdeceased sons and daughters.Like Nolen-Hoeksema and Larson (1999), Cadell (2005), Tedeschi and Calhoun's(2004) discoveries about personal growth after traumatic events, the bereaved parents andcouples in this research project experienced transformation through this lived experience. In95line with Tedeschi and Calhoun's model of posttraumatic growth, they all expressed co-existence of growth (e.g., lessons learned, changed view of life and relationships, realizationof inner strengths) and immense distress and enduring pain. For some of the couples,spiritual ties, or experiences, with their deceased child have helped them to continue evolvingpersonally and as a family. And for all of the participants, it was clear that their child's life,and their experiences caring for that child, will never be forgotten. Their love for each other,and interminable bond as a family, is a testament to that.Partners in Grief: Implications for Health Care ProvidersThere is no guidebook given to parents to help them negotiate the rocky terrain ofcaring for a child with a life-limiting condition. It is an unpredictable, and scary, road totravel on. Understandably, these caregiving parents turn to their health care providers fordirection, to act as a compass for them. All of the couples in the study referred to thefogginess of this illness path and how health care providers sometimes made it clearer andmore manageable and at other occasions, did not.Three of the couples spoke of the need to be strong advocates for their ill child andtheir family in order to get their many needs met, to make their paths smoother. Compatiblewith participants in Contro et al.'s (2004) study, these parents spoke of perceiveddeficiencies in the health care system, poor communication and conflict with health careproviders, being forced into advocacy roles, and lack of support in bereavement. One mightwonder if some families who cannot assume the role of advocates might fall through thecracks and not get the support they need.The stories and themes that emerged in this research should grip the minds and heartsof health care providers working with families who have a child with a life-limiting illness96and urge them to evaluate their own and others' practices. As Contro et al. (2004) underline,these families have multiple and diverse needs and concerns and the more emotional andpractical help they can receive hopefully the easier it will be for them to walk this traumaticpath.In the least, I would encourage all health care professionals working with families inthis situation to use empathy; to try their best to understand and empathize with theemotional and cognitive experiences of parents of children diagnosed with a life-limitingillness. This might help in creating relationships that the parents can turn to for comfort, asense of safety, and a way of decreasing isolation during the difficult times. If families canfeel that each person on the health care team is warm and understanding perhaps this willcounter-act the frigid weather of their journey. I am aware that medical schools are bringingempathy training into their curriculum. Perhaps all health care professionals working in thearea of pediatric palliative care could be required to take empathy training.Indeed, one of the issues brought up by three of the couples in the study, was howdoctors delivered difficult news. The following excerpt from an interview with Gail in thestudy illustrates this point:The way we found out was that I happened to be at the hospital for dental, Elizabethhad some dental work, I had the two kids and I was getting ready to leave in the carand the doctor came up to me and said oh oh oh by the way we just found out, we justgot the results back and she has a progressive neurological disease and someone willcall you. So I don't to this day how I got home . I have no recollection how I gothome. So I told Andrew and we both sat around in shock until (m-until the call came)I don't know how long ...97From diagnosis into bereavement, parents whose children live with and die from alife-limiting illness deserve to be treated with respect and appreciation. These familiesendure a struggle that most believe they could never have the physical and emotional strengthto manage. As helpers, health professionals are put in the position to use their energy,knowledge, and skills to aid these unfortunate families. While watching the suffering and therockiness of the road these families are travelling on, health care professionals are given theopportunity to pull from deep inside their hearts and minds to contribute.Partners in Grief: Implications for Counselling Psychology PracticeHere I present the summary of what I learned from this research project as it pertainsspecifically to the field of counselling psychology.Grief isolates. As counsellors, our duty is to help reduce clients' experiences ofisolation. The counsellor, because they are a person too, possibly even a parent, might feelemotionally and mentally challenged?perhaps, helpless? by working with parents whohave lost a child. Questions that could arise in the counsellor's mind might be : How can Iwrap my head around something that is devastating, unexpected, and enormously unfair?How can I help bereaved parents accept something that is so unacceptable? How can I assistthe bereaved in creating positive meaning out of an event that perceptibly is without benefits?First and foremost, I believe offering empathy and validation should be a main focusfor the counsellor. This is not dissimilar to what is helpful in the relationship of the bereavedcouple. Counselling, for bereaved individuals and families, should be a place where it is safefor grief to be brought in. Where the counsellor attempts to understand the unique griefpathway that the individual or family is on and where suffering is accepted, empathized with,and explored. I heard from couples in my study about how uncomfortable, draining, and98unsatisfying it is to leave their grief out of the picture when they are around people whowould not "go there" with them. This research project emphasized to me that grief is anarrative and complex process and that through verbalizing, and having acknowledged, one'sexperiences of suffering and strength-building, healing may begin.The grief pathway is different for every individual. Each family will also managegrief uniquely as they are influenced by their own values, beliefs, histories, culture,spirituality, and context. As counsellors intent on helping bereaved parents cope with thetrauma of losing a child, it is important to look to the parents to guide the way and informyou about how they want to travel in bereavement and to realize that there is no one way orright way to grieve. Some might be more loss-oriented and others more restoration-oriented.It is all normal. Indeed, normalizing bereaved parents' distinctive grief processes should beessential to any grief counsellor's work.Spirituality and sexuality should not be ignored. In this study, I learnt the importanceof inquiring about these facets of the couples' bereavement process. It has been confirmed byempirical research that therapists often avoid asking about clients' spirituality (Brotherson &Soderquist, 2002). Two couples in this study explicitly discussed how their faith has been asignificant ally in their grief processes; indeed, their spiritual frameworks were a hugecomponent of their narratives. Brotherson and Soderquist strongly encourage therapists tolearn about whether a child's death has affected spiritual or religious beliefs or if spiritualbeliefs or practices serve as an important role in helping parents cope with their grief.Spirituality or religion may or may not be used as a source of support and I wouldsuggest that counsellors do some questioning around the spiritual aspect of the individual'sor family's life. Some individuals may find comfort and meaning in continuing a99relationship with their deceased child; whereas for others, it is helpful to find closure in thatrelationship and begin moving on. One family in this study explained that their spiritualbeliefs are that their child is dead and that they will reunite with her one day in heaven butnot until then. Other families talked about continuing relationships with their deceased sonor daughter.Some couples in the study mentioned that having an ill child or being bereavedimpacted their sexual and intimate relationship. This confirms empirical research that hasproduced similar findings (Hagemeister & Rosenblatt, 1997). I think that counsellorsworking with bereaved couples should address the sexual relationship of the couple and beprepared to normalize for clients experiences of difficulty with intimacy. Exploring withcouples what intimacy means to them might be a good start. Secondly, I would suggestinvestigating collaboratively what helps and what hinders their intimate relationship.Focusing on what would assist in reigniting their romantic bond might be a usefulintervention in helping them slowly return to normalcy and enhance their connection to eachother. For example, during a child's illness, even during the palliative stage, counsellorsmight suggest that the couple make some time for just the two of them if they can. Questionscounsellors might ask to catalyze the process are: "What made you fall in love or love yourpartner in the beginning of the relationship? "What were some things your partner did thatmade you feel accepted, appreciated, and excited?"Counsellors should keep in mind the value to relationships of having couples utilizehelpful relationship-focused coping strategies, such as: compromising, accommodating oneanother's coping style, and empathizing . A couple in the study stressed to me the enduring100benefit to their relationship that came from understanding and accepting the other person'sdifferent way of dealing with their feelings and their grief.Using interventions that will help the partners increase their empathy and empathicbehaviors toward each other?facilitating healthy relationship-focused coping?could bevery fruitful. A counsellor might pose these questions, "What are some ideas you have aboutwhat would best help your partner cope with their grief?" For example, a wife might mentionthat her husband would probably appreciate getting to go out with his friends more. Thehusband, in this scenario, might reciprocate saying, "I think my wife would prefer if I mademore time for us to talk about our son who died." Together, with the counsellor, the couplemight agree to a contract to support their partner by enacting specific helpful behaviors.Finally, as a researcher, training counsellor, and bereaved individual, I ferventlybelieve that meaning-making is essential prior to and in the aftermath of a loved one's death.It is also not always an easy thing to accomplish. Recent literature has called for the use ofnarrative exercises and life review (e.g., Gilbert, 2002) in working with bereaved individualsbecause of the potential for meaning-making. The couples who contributed to this researchall expressed that benefits were gained through telling their stories. One couple e-mailed meand said that having their written story gave them "something tangible to hold on to."Another couple during the interview remarked that although they had "told their story manytimes" they were surprised by the novel revelations that arose in the version they shared withme. Throughout all of the interviews, I observed participants being surprised by informationflowing from their partner's mouth . New discoveries about one's self and one's partner cancome from story-creation.101Through individual and collaborative biography-making, couples' relationships mightbenefit not only because the partners are getting a chance to learn more about each other buthave their relationship solidified by storying a shared journey. They are making-meaningtogether. Through telling their stories, the bereaved parents were able to have theirexperiences heard and validated not just by me but by their partner. They are bearing witnessto each other's powerful processes. Co-creating stories in counselling for the aforementionedreasons should be a part of work with bereaved couples.For those bereaved couples with other children, redeveloping or maintaining theirrelationship, unarguably, has positive implications for the family system. I hypothesize thatwhen parents have a stable, loving relationship their children have a greater sense of well-being and adjust better to life's transitions. A stable partnership creates the foundation for astable home.Implications for Future ResearchResearch on couples undergoing bereavement following a child's death can go in asmany directions as there are stories about this unusual tragedy?thus, many. Given that thisstudy was limited with regards to diversity and sample size, one place to begin with a newproject would be to enhance the number of couples as well as enroll a more varied sample. Itwould be useful, considering the multiple ethnic and cultural backgrounds, and design offamilies in Canada, to replicate the study and include non-heterosexual partners?gay,lesbian, bisexual, transgendered?as well as more couples who are not Caucasian.Implementing a longitudinal method could also generate interesting and important findingsabout the long-term outcomes of child-loss on couples. A longitudinal design exploring thelives of bereaved couples might inform health professionals, and the general public alike,102about what changes take place over time as bereaved couples continue walking the path ofbereavement together; about what keeps a relationship working not only 10 years after theloss, for instance, but 20; and about how couples continue to learn from their loss as the yearspass.Three of the couples in this research lost children to hereditable diseases. A studyfocusing on the experiences of couples whose children die of these particular illnesses couldprovide information about the unique impact these illnesses, and deaths, have on the spousalrelationship. For instance, learning more about the decision-making issues these bereavedcouples might encounter about having more children could be useful for health professionals,and the public, to know about.Another way of becoming more educated about successful bereaved couplerelationships could come from expanding our understanding of the grief processes of eachgender. This might include conducting separate interviews for the males and females so thatwe get a more in depth narrative from each partner and their journey. A study comparingintact couples to spousal partnerships that are severed during or after a child's life-limitingillness could also be very instructive. Hence, another research project that could extend whatI have done is a study using an intact bereaved couple sample and a sample of divorced orseparated bereaved couples and single bereaved parents. Another comparison study thatcould produce valuable findings would be exploring the differences between bereavedcouples who have remaining children and those that lost their only child. How does theiridentity of parents change when they have lost their only child? Yet another study that couldprovide rich and useful data, and one that could potentially validate the themes presentedhere, could use a grounded theory method. Using 15-20 couples, a grounded theory study103could generate a theory and model about how couplesdo cope through such a trauma. Forcouples who are care-giving for a child with a life-limiting illness or who have lost a child tothis type of condition, having a validated model to look to as a way of guiding them throughtheir couple processes could be very helpful. This would also be of great value to helpingprofessionals who work with bereaved parents and couples.ConclusionRallison and Moules (2004) use the term `cloaking' to describe how we veil thereality of children dying perhaps in hopes that if we pretend it is not there, it will disappearfrom our psyches'. When we remove these cloaks, though, we are able to get closer to anunfortunate reality?that children do die. One father in the study used the metaphor of"islands" to describe how care-giving families of children with life-limiting illnesses areliving on their own islands: They are isolated from reality and from others. One reason thesefamilies might feel removed from others?and this was noted by several of the studyparticipants?is because of the intense nature of being a caregiver which requires living anexistence that revolves around care-giving. As one parent called it, a "treadmill existence ."Still, similar to the cloak metaphor, there is an implication that dying children are hiddenfrom society because it is too painful and too anxiety-provoking for the majority of people tohandle confronting. Beaker (1973), in his classic book the "Denial of Death" argued we are adeath-denying society. We are frightened of facing our own mortality . But what happens tothe parents who are forced to face mortality because their own children are dying?The stories presented here are about the helplessness and hopelessness couples comeup against as they face their child's death. They are about the bevy of activity and theassociated stress that continues until the last breath is taken by their son or daughter. Yet104they also all contain multiple messages about hopefulness and psychological and emotionalperseverance.105ReferencesAttig, T. (2001) . Relearning the world : Making and finding meanings. In R .A. Neimeyer(Ed.), Meaning reconstruction and the experience of loss (pp. 33-53). Washington,DC: American Psychological Association.Badr, H. (2004) . Coping in marital dyads : A contextual perspective on the role of genderand health. Personal Relationships, 11, 197-211.Balk, D. E. (2004) . Recovery following bereavement : An examination of the concept.Death Studies, 28, 361-274.Beaker, E. (1973). The denial of death . New York, NY: The Free Press.Bosticco, C., & Thompson, T.L. (2005). Narratives and story telling in coping with grief andbereavement. Omega, 51, 1-16.Braun, M.J., & Berg, D.H. (1994). Meaning reconstruction in the experience of parentalbereavement. Death Studies, 18, 105-129.Brown, L., & Gilligan, C. (1993). Meeting at the crossroads : Women's psychology andgirls' development . Feminism Psychology, 3, 11-35.Cadell, S. (2005, May) . 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Pacific Grove, CA : Brooks/Cole.Hagemeister, A.K., & Rosenblatt, P. C. (1997) . Grief and the sexual relationship of coupleswho have experienced a child's death. Death Studies, 21, 231-252 .107Hogan, N. S., & Schmidt, L. A. (2002). Testing the grief to personal growth model usingstructural equation modeling. Death Studies, 26, 615-634.Himelstein, B. P. (2006). Palliative care for infants, children, adolescents, and their families.Journal of Palliative Medicine, 9, 163-181.Jones, J.B., & Neil-Urban, S. (2003). Father to father : Focus group of fathers of childrenwith cancer. Social Work in Health Care, 37, 41-61.Kamm, S., & Vandenberg, B. (2001) . Grief communication, grief reactions and maritalsatisfaction in bereaved parents. Death Studies, 25, 569-582.Klass, D. (2001). The inner representation of the dead child in the psychic and socialnarratives of bereaved parents. In R .A. Neimeyer (Ed.), Meaning reconstruction andthe experience of loss (pp. 77-94). Washington, DC : American PsychologicalAssociation.Lapadat, J.C., & Lindsay, A.C. (1999) . Transcription in research and practice: Fromstandardization of technique to interpretive positionings. Qualitative Inquiry, 5, 64-86.Lang, A., Gottlieb, L. N., & Amsel, R. (1996) . Predictors of husbands' and wives' griefreactions following infant death: The role of marital intimacy . Death Studies, 20, 33-57.Lehman, D. R., Lang, E.L., Wortman, C. B., & Sorenson, S.B. (1989). Long-term effects ofsudden bereavement: Marital and parent-child relationships and children's reactions.Journal of Family Psychology, 2, 344-367.Lieblich, A., Tuval-Mashiach, R., & Zilber, T. (1998) . Narrative research : Reading,analysis, and interpretation. London: Sage Publications .108Littlewood, J. L., Cramer, D., Hoekstra, J. & Humphreys, G. B. (1991). Gender differencesin parental coping following their child's death. British Journal of Guidance andCounselling, 19, 139-148.Nadeau, J. W. (1998). Families Making Sense of Death . Thousands Oaks, CA : SagePublications.Najman, J. M., Vance, J. C., Boyle, F., & Embleton, G. (1993) . The impact of a child deathon marital adjustment. Social Science and Medicine, 37, 1005-1010.Neimeyer, R.A. (1998). Social constructionism in the counselling context . CounsellingPsychology Quarterly, 11, 135-149.Neimeyer, R.A., Prigerson, H.G., & Davies, B. (2002) . Mourning and meaning. AmericanBehavioral Scientist, 46, 235-251.Nolen-Hoeksema, S., & Larson, J. (1999) . Coping With Loss . New Jersey : LawrenceErlbaum Associates, Inc.O'Brien, T . B., & Delongis, A. (1996) . The interactional context of problem-, emotion-, andrelationship-focused coping: The role of the big five personality factors . Journal ofPersonality, 64, 775-808.Rallision, L., & Moules, N. J. (2004) . The unspeakable nature of pediatric palliative care:Unveiling many cloaks. Journal of Family Nursing, 10, 287-301.Reissmann, C. K. (1993). Narrative analysis . Newbury Park, CA : Sage Publications, Inc.Riches, G., & Dawson, P. (1996a) . Communities of feeling: The culture of bereaved parents.Mortality, 1, 143- 161.109Riches, G., & Dawson, P. (1996b). Making stories and taking stories : Methodologicalreflections on researching grief and marital tension following the death of a child.British Journal of Guidance and Counselling, 24, 357-365.Riches, G., & Dawson, P. (2002). Shoestrings and bricolage : Some notes on researching theimpact of a child's death on family relationships . Death Studies, 26, 209-222.Rosenblatt, P.C. (1995). Ethics of qualitative interviewing with grieving families. DeathStudies, 19, 139-155.Schaefer, M.T., & Olson. D.H. (1981). Assessing intimacy : The pair inventory. Journal ofMarital and Family Therapy, 41, 47-59.Schwab, R. (1992) . Effects of a child's death on the marital relationship : A preliminarystudy. Death Studies, 16, 141-154.Schwab, R. (1998) . A child's death and divorce : Dispelling the myth. 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Death Studies, 25, 51-66.111Appendix A:Ethics ApprovalUBC The University of British ColumbiaOffice of Research ServicesBehavioural Research Ethics BoardSuite 102, 6190 Agronomy Road, Vancouver, BACKNOWLEDGEMENT LETTERThis letter will acknowledge receipt of the following document(s) regarding the above-mentioned study:DATE OF ACKNOWLEDGEMENT: Completion of ResearchJune 13, 2007Acknowledged on behalf of the Behavioural Research Ethics Boardand signed electronically by:INSTITUTION/ DEPARTMENT:UBC/Education/Educational & CounsellingPsychology, and Special EducationSPONSORING AGENCIES:Unfunded Research - "Partners in GriefPROJECT TITLE:Partners in GriefUBC BREB NUMBER:H06-80535PRINCIPAL INVESTIGATOR:Marla BuchananMs. Shirley Thompson, Manager112Appendix B:Letter of InvitationDear Mothers and Fathers,I am a master's student in Counselling Psychology at the University of BritishColumbia (UBC) and am conducting interviews, as part of my thesis research, with coupleswhose children have died after receiving pediatric palliative care for a life-limiting illness. Iam very interested in hearing the stories of intact couples who have gone through thisexperience and are now in bereavement. Specifically, I am hoping to learn how marriedcouples cope together during their child's illness, through palliative care and intobereavement process.I understand that this is a challenging and emotional time for you and the prospect oftalking to a stranger about your personal experiences may seem daunting. However, I amhopeful that these interviews might be personally beneficial in the sense that telling one'sstory can be meaningful and helpful in the grief process. I also plan, as the listener, toprovide a warm, safe, and supportive environment to listen to your story. The interviews willbe done at a place of your choice and where you are most comfortable. I am able to travel tomeet with you if you live anywhere in British Columbia.If you have been bereaved for a minimum of 1 year, are in a marital relationship thatyou would describe as "intact" and that began before your deceased child was diagnosed witha life-limiting illness, and both you and your spousal partner are interested and willing toshare your experience, please contact me. I would be happy to answer any questions yourmay have. Dr . Marla Buchanan, an associate professor in Counselling Psychology at UBC,is my supervisor and can also be reached to answer any questions you have about the study.I would like to meet with both of you, at your convenience, in a confidential setting of yourchoice. If you would like to share your stories, I would love to listen . Please e-mail ortelephone Niki if you are interested in participating.Sincerely,Niki PaleyE-ma'Telephone:113Appendix C:Screening Interview"Thank you for your interest in my project. I would like to give you some details about thestudy, and then if you're interested, I can ask you a few questions to figure out if you areeligible. Does this sound okay?""The goal of the study is to better understand how couples cope with having a child inpediatric palliative care and the transition into bereavement. I'd like to find out aboutindividual and joint coping processes, how married partners accommodate one another'scoping, and, generally, how couples are able to remain intact during such a stressful andemotional time. To accomplish this I will be conducting in-depth interviews with coupleswhere I will invite story-telling."Do you have any questions?""We will schedule a visit that will be convenient for both you and your partner and theinterviews will last about 1.5 hours. About a month after the interview, I will send youtranscripts as well as the story I have written based on what the narrative you will haveshared with me.""Does this sound like something you both would be interested in?"If YES?"That's great . I'd like to ask you some questions now to get a sense of yourexperience and background and also to determine your eligibility for the study."If NO?"May I ask why? Thank you so much for your time and energy ."Name:Gender:Home phone number:E-mail:Marital status (how long they have been married) When did child die? (needs to be at least 1 year ago) Name/age of child Did they receive palliative care? What got you interested in study? 114Are both you and your partner okay with being interviewed and sharing your story as acouple? Details/Notes:"You might want to spend some time before we meet reflecting on your experiences as acouple coping with  's illness and death before we meet. It might be helpful for you towrite about it or talk about it or even just spend some time thinking about your story as acouple."115Appendix D:Consent FormParticipant Consent FormTitle Partners in Grief: Couples' Narratives of the Transition from PediatricPalliative Care Into BereavementPrincipal Investigator . Marla Buchanan, Department of Educational andCounselling Psychology, and Special Education, (604) 822-4625.Co-investigatorNiki Paley, Department of Educational and CounsellingPsychology, and Special Education, UBC, (604) 250-0732. This research isbeing conducted as part of the thesis requirement for a Masters degree inCounselling Psychology.Purpose:I invite you to participate in a study on bereaved couples who have lost ason or daughter to a life-limiting illness. This is an area that deserves moreattention and research as little is known about couples who havetransitioned from pediatric palliative care into bereavement and yourparticipation is greatly needed and appreciated . The purpose of my study isto document, describe, and understand the lived experiences of coupleswho have stayed together throughout their child's illness and now in thejourney of bereavement . It is expected that the stories emerging from thestudy will lead to a better understanding of couples who have endured thistype of loss and that other couples might benefit from these types of!earnings.You have been selected to participate because of your relevantexperiences.Study Procedures:If you choose to participate in this study, you and your married partner will beinterviewed together for about 1 .5 hourstranscribed, I will send back the transcriptions and your story to have youverify that the stories are accurate . In total, you will be committing about 4hours to this research.The interviews will be audio-taped, with your consent,interviewer's purposes only. The interview questions concern how you havecoped as a couple, how you prepared for you son or daughter's death, andhow you have managed this journey together116Confidentiality:The interviews are confidential and the raw data (audiotapes andtranscriptions) will be reviewed only by me and my supervisor, Dr. MarlaBuchanan, and will be kept in a locked filing cabinet for 5 years, followingthe research interview, and will then be destroyed . All documents will beidentified only by a code number . To protect your anonymity, pseudonymswill be used when reporting the findings . If you wish to omit some aspect ofthe interview after we have met, I will honor that request . About a monthafter the interview, you will receive the transcript from the interview as well asyour couples' narrative written by me . At that point, you will be able to verifythat the narratives and transcripts are accurate and you may choose tochange, add, or omit sections of your story.Benefits:You will not receive anything monetarily for participating but you might findthat telling your story is beneficial to yourself and your partner.Risks:There is some minimal risk involved in this study. As the research topic is verypersonal, it may arouse strong feelings, such as nostalgia or sadness whenspeaking about your loss. If you feel any question is too personal, or you feeldistressed during the interview, you are free to refrain from answering.I am providing a list of counselling services that you might want to use in thecase that the interviews bring up emotions and thoughts you want to processwith a trained counsellor (see list with attached telephone numbers) . Youmake also speak with Dr. Marla Buchanan (604-822-4625), a counsellingprofessional, who has experience working with people dealing with grief andloss.Contact for information about the study:If you have any questions or desire further information with respect to thisstudy, you may contact Dr . Marla Buchanan at 604-822-4625 ormarla.buchanan@ubc .ca or Niki Paley at 604-228-1257 or for concerns of rights for research subjects:If you have any concerns about your treatment or rights as a researchsubject, you may contact the Research Subject Information Line in the UBCOffice of Research Services at 604-822-8598.Consent:Your participation in this study is entirely voluntary and you may refuse toparticipate or withdraw from this study at any time without any negative117consequences . Your signature below indicates that you have received acopy of this consent form for your own records.Your signature indicates that you consent to participate in this study.SignatureDate:118Appendix E:Interview GuideOrientating interview question:I'm interested in hearing about how as a couple you coped with having a child diagnosedwith a serious illness and then learning that your son or daughter would be receivingpalliative care and would eventually die from the disease. I also would like to hear abouthow you're doing now as a couple . I expect that you each have your individual stories andthat this has been a complex experience. I really would like to hear about and understandyour story as a couple, and as individuals, as fully as possible. There might be times when Iask you more about a specific situation and you can always choose to not answer a questionor choose to stop the interview. This is your choice about what you wish to share Maybe wecan start at a time before your child was diagnosed, so that I can get a sense of your story as acouple, then we can go from there.Main interview question:"How have you coped as a couple with the transition from having an ill child receivingpalliative care to being bereaved?Possible facilitating questions:1. Before the diagnosisa73 What was life like before the diagnosis?a73 What was it like when your child was diagnosed?2. Pediatric Palliative Carea73 How did you deal with the news that no more curative treatment would be given?a73 How did you prepare for your child's death together?a73 What were some of your conversations?3. Bereavementa73 Have there been any moments where you're noticed that you've changed as a coupleor individually in positive ways because of this experience? What have some of thosechanges been?a73 How have you accommodated one another's coping styles?a73 What is different about how you view life now?your relationships with each otherand others, the world, etc.?a73 What are some of "life lessons" or "life truths" that you have come to together as aresult of your child's death?a73 *Has intimacy been a challenging part of your relationship or has nothing changed inthat area? Has it improved?119*These questions were added after my interview with Don and Christine after Christineemphatically expressed that this was an area in their relationship that became difficultand that I should ask the other couples about it.Version 7/20/2006120Appendix F:Resource ListBEREAVEMENT SUPPORT RESOURCESBritish Columbia Bereavement HelplineThis is a helpline for referral and support. They can help you find local grief and counsellingservices to meet your specific needs.Telephone: 604-738-9950 Toll Free : 1-877-779-2223Living Through Loss Counselling Society (LTLC)LTLC has a drop-in group for people who have issues related to loss through death. Thesesessions focus on sharing experiences, learning about the reaction to grief and loss, andcoping mechanisms. The sessions take place Wednesday afternoons from 2 :30 ? 4:00 p.m.The sessions are free but donations are accepted.Where: #210 1847 - West Broadway, VancouverTelephone: 604-873-5013 e-mail: Website:


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