15547

2014

JPOXXX10.1177/1043454213515547Journal of Pediatric Oncology NursingVega et al.

Article

When Grief Turns Into Love: Understanding the Experience of Parents Who Have Revived After Losing a Child Due to Cancer

Journal of Pediatric Oncology Nursing 2014, Vol. 31(3) 166­–176 © 2014 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454213515547 jpo.sagepub.com

Paula Vega, NM, BSN, MS1, Maria Soledad Rivera, PhD, MS1, and Rina González, MS1

Abstract A child’s death caused by cancer generates a deep impact on his/her parents, who can be affected by serious health problems due to an impairment of their lifestyle. Notwithstanding their suffering, some parents manage to overcome it and discover a new meaning for their lives. The goal of this phenomenological study is to understand the lived experiences that help parents to revive after the death of their child due to cancer. The participants were fathers and mothers who believe that they have elaborated their mourning. Their lived experiences were collected in interviews they had previously agreed to give. The question that steered the interview was: “What is the experience you went through that helped you to revive after your child died due to cancer?” Data were analyzed using Streubert’s method. Analyzing the interviews of the participants, 3 interweaved essences were detected: transition from surviving to reviving themselves; ascribing a sense and meaning to the life, agony, and death of a child; and helping other parents through one’s own experience. Keywords grief, pediatric oncology, parents

Introduction The death of a child due to cancer generates a deep impact on his/her family, mainly for their parents, who not only suffer during the illness process, while accompanying and taking care of their child, but also during the gradual deterioration of their child’s health until the moment they die, and especially when there has been unresolved grief and suffering, or when there was a difficult time (Arnold & Buschman, 2008; Kreicbergs et al., 2005; SaikiChaighill, 2002; Wolfe et al., 2000). In modern society, the experience of losing a child is considered a taboo, making it a paradoxical and contradictory situation because a child is expected to survive his or her parents (Alameda & Barbero, 2009). This experience is in itself an important stressor and a disturbing factor for the family, since they refuse to accept the passing away of a child, often linked to a “death wish,” “fear of not knowing how to get out of the black pit in which they are now,” and the feeling that “a part of oneself has passed away when one’s child has died” (Gillis, Moore, & Martinson, 1997; Kreicbergs et al., 2005; Thompson et al., 2011; Wheeler, 2001).

The death of a child is a major predicting factor of risk mourning, because it constitutes very deep grief and suffering that is difficult to surmount over time, which adds to the high prevalence of posttraumatic stress and important changes in the lifestyle of the parents, such as increasing alcoholism and smoking, changes in diet patterns, as well as psychopathological disturbances related to stress. These situations increase the susceptibility to infectious diseases, the appearance of oncologic and mental pathologies, and cardiovascular conditions and depression, all of which augment the risk of death (Alameda & Barbero, 2009; Enright & Marwit, 2002; Kars et al., 2011; Li, Precht, Mortensen, & Olsen, 2003; Murphy, Johnson, Chung, & Beaton, 2003; Murphy, Johnson, Wu, Fan, & Lohan, 2003). 1

Pontificia Universidad Católica de Chile, Santiago, Chile

Corresponding Author: Paula Vega, VNM, BSN, MS, Department of Child and Adolescent Health, School of Nursing, Pontificia Universidad Católica de Chile, Vicuña Mackenna 4806, Macúl, Santiago, Chile. Email: [email protected]

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Vega et al. All these factors give rise to a public health concern, resulting in the need for assigning additional resources and energies to health care professionals, so as to comfort, support, and attend to the parents during their mourning. Nevertheless, to perform a suitable intervention, it is important to take into account that the concept of “mourning elaboration,” advanced by Freud (1917) in his work Grief, Suffering and Melancholy, has evolved over time. Freud stated that mourning is a reaction of adapting oneself in a relatively passive and universal process, whose main objective is the elaboration of detachment toward the dead person, through previously established stages (Bowlby, 1969; Parker, 1970, as cited in Guíc & Salas, 2005). Later, during the 1980s, Wonden (1982 ) and Rando (1995) conceived mourning as an active process of reorganization, during which the mourner does not advance through stages, but rather, he or she performs tasks, such as accepting reality, experiencing grief and sorrow due to the loss, adapting himself or herself to an environment where the loved one is missing, and redirecting the emotional energy away from the missing person. In this way, they would succeed in giving a new meaning to their lives, as well as discovering the benefits of their experience of grief and suffering (Murphy, Johnson, Wu, et al., 2003). Klass (1997) emphasizes that mourning is a personal experience, deeply influenced by our beliefs and values about fatherhood/motherhood, and disease/death; therefore, it is necessary to explore this reality in a Latino society like that of Chile. In Chile, cancer is the second most frequent cause of death in children between 5 and 15 years of age, reaching a mortality rate of 3 per 100,000 children in 2008 (Rodríguez et al., 2008). Cooperative work in the Programa Nacional de Cáncer Infantil (PINDA; National Programme for Infant Cancer), has allowed for substantial advances in the detection and early treatment of this health problem, although 32% of the children affected by this illness still die. At present, the care of the pediatric oncology patient and their family in Chile is within a “continuity in the attention given by the healthcare team,” starting with the diagnosis of the health problem, up to the curing of the child or death. This allows for the establishment of a close and trustful relationship between the health care professionals and the family, especially when death occurs (Cádiz, Rodríguez, Palma, Farías, & Cavada, 2007). The sustained support for those parents whose child approaches the terminally ill phase is part of the Protocolo de Alivio del Dolor y Cuidados Paliativos (CP) del Niño con Cáncer [Pain relief and palliative care protocol for the child with cancer] from the Chilean Health Ministry (MINSAL). This protocol consists of a multidisciplinary team within the oncology staff of the hospital, whose goal is

“to support and accompany the child and their family during the final stages of the disease and during the mourning process.” Eight years after the launch of this protocol, results show an improvement in the care provided by the health care professionals as well as the accomplishment of the health goals established in 2003 (Rodríguez et al., 2008). However, communication and support after the child’s death have been established only in a small number of cases, and exclusively only at the parent’s request; thus, some disaffection is generated with the parents who do not seek help and who also avoid going to the hospital. In this context, in Chile, it is important to further study the experience of parents of a child who has died of cancer, who have managed to overcome their grief and who have managed to find new meaning for their lives. Some of those parents, whose children were treated at public hospitals, organized themselves and founded the “Corporación Re-Viviendo,” whose main objective is to “shelter and accompany parents who have lost their children due to cancer, helping them to discover a new meaning for their lives.” For these parents, the term to revive means achieving renewal to their lives; in this research, we will explore the factors that helped them to recover life.

Objective The aim of this study is understand the lived experiences that help fathers and mothers to recover after the loss of a child due to cancer.

Methodology A qualitative phenomenological method was chosen, based on Husserl’s ideas of phenomenology, “A return to reflexive intuition in order to describe and clarify the experience, the way in which it is lived, and it is constructed from the awareness of the person who undergoes the studied phenomenon” (Husserl, 1970, as cited in Ray, 2003, p. 142). To develop this study, we follow the phenomenological process as established by Streubert and Carpenter (2007). Bracketing process was lived rigorously from the beginning of the research. All investigators wrote a personal description of the phenomenon of interest; this way, presuppositions were put aside and separated in written form. We also strived to record the emotions and feelings that appeared throughout the entire process, a practice that was agreed to by all the authors. After giving written consent, data was collected one in-depth interview with each of the participants. The first question used to commence the interview was: “Could you share with me which lived experiences helped you to recover after the death of your child?” Each private interview was audiotaped with the consent of the participant. Later, they were

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transcribed verbatim in order to perform a comprehensive analysis. The authors analyzed each interview separately for units of meaning; we then reviewed them together. In this last analysis, we established the comprehensive categories and the relationship between them so we could analyze the dynamics of the phenomena and proceeded to write a formal description of each one. We asked 3 of the participants to review the descriptions for accuracy. We reviewed the relevant literature to see if the phenomena we discovered had been seen before so that the results could be disseminated throughout the academic and clinical community. The inclusion criteria for the participants were the following: fathers and mothers who were participating in a parent’s Corporation of self-help calls reliving (“Corporación Re-Viviendo”) at the moment of the interview; who had lost their child due to cancer more than a year before and who considered themselves as having already dealt with their loss, and who were duly allowed by the Corporation’s psychologist, who deemed that the interview would not constitute a therapeutic risk for the participant. Participants volunteered to participate in this study and signed an informed consent form. Only 2 of the parents were excluded from the study. The psychologist did not allow their participation because they presented symptoms of depression and were referred to therapy. The number of participants was established applying the classical criterion of essence saturation, which in this case was 8 interviews. The participants were 3 fathers and 5 mothers, within the age range of 35 to 47 years. At the time of the interview, it had been 2 and 6 years since their child’s death. Regarding their educational level, one of the parents had a university degree, 4 had completed technical education, and 3 had finished their high school education. As to their occupations, 2 of the mothers were housewives, 1 was a merchant, and the rest were employees. At the time of the interview, all the participants had a stable partner and had between 2 and 3 children; only 2 children had been born after the death of their siblings. All the parents were Catholic, although only 2 of them were active in their church. Regarding their dead children, they were between 3 and 8 years old at the time of their death. To ensure compliance with the ethical aspects of the research, we used part of the guide developed by Firby (1995, as cited in Streubert & Carpenter, 1999), considering the criteria of justice, autonomy, beneficence, and nonmalfeasance. We also received approval by the Ethics Committee of the Nursing School of the Pontificia Universidad Católica de Chile in August 2008.

Findings As a result of the data analysis, multiple meaningful units were revealed, which were finally grouped into 3 main

essences. “Reviving” was a process of multiple experiences that guided the participants toward a transition from surviving to reviving themselves through a process of personal growth, which is the first meaningful unit, with 5 dimensions, each containing various processes: (a) understanding that their families need them; (b) feeling the unconditional support of God, their families, and “Corporación Re-Viviendo”; (c) being convinced that everything possible had been done to contribute to the well-being of their child; (d) experiencing grief and suffering as part of a continuous process; and (e) keeping a connection with their dead child brought comfort to them. Then the parents took a second step, when they began to ascribe a meaning and a sense to the life, agony, and death of their children. This process developed as they began to identify and to attribute special qualities to their child, for example: he or she had a clear mission in his/ her life, had the strength to face any adversity, and the ability to develop an extraordinary spirituality. Thus, parents went through multiple psychospiritual processes in a dynamic that moved them forward and backward, which implied reorganizing their lives in a nonlinear process. These parents had to recognize and evaluate themselves as parents and as individuals, experiencing personal growth, which endowed them with strength and wisdom, and made them feel that they now were able to help other parents authoritatively because of their experience. It is through helping others that they commemorated the lives of their children and turned their legacy into something concrete by participating at “Corporación Re-Viviendo.” This allowed them to transcend, turning the grief and sorrow they felt into love for their dead child and for their neighbors, transforming the reviving process into a virtuous circle of life. Next, we will show the structure of the revealed phenomenon, by describing the essences and their internal processes.

Transition From Surviving to Reviving Themselves For grieving parents, mourning is a dynamic and continuous process of multiple experiences that allows them to move from survival to revival and toward others. Five subdimensions help describe how this process unfolds for parents. They Understood That Their Family Was in Need of Them.  When death occurs in a child, not only are the parents affected but also the siblings and grandparents, among others. This marks each family member deeply, creating fissures, discouragement, apathy, and intense sadness that disrupt family dynamics and their quality of life. It is for this reason that several of the parents take the

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Vega et al. responsibility to carry the rest of the family forward, forcing themselves to get out of their sadness and move on, and in so doing also lifting their spouse and children. In rereading these testimonies it was evident that it was the latter that become the focus of their life, the reason for living and struggling day to day: It’s like carrying my family on my shoulders. Because I haven’t allowed myself to cry, for if I fall, my husband will fall. And if he falls, my youngest kid will fall, too. And then my sister and my mother, everybody will fall! So it’s like a burden you carry on your back, and although I’ve been mourning for about 4 years, I still carry it. I tell myself: “I can’t, I can’t afford to feel discomforted, because if I do, my family will collapse.”

They Felt Unconditional Support From God,Their Families, and “Corporación Re-Viviendo”.  The loss of a child leaves an enormous gap in parents, creating loneliness, frustration, and guilt. However, in the process of revival, faith in a merciful God allowed them to make sense of what their child went through, which added to the affection and support within the family and the comprehensive support of parents participating in the Corporación. When the disease began . . . when he had to be in the hospital. . . . I felt great support from my family. So I felt quite supported all the time, I never felt lonely. . . . This support connected me with God, the Creator. . . . For me, there may be very hard times, but I will never lose my faith, we must carry on living. Well, that is one of the things which put us closer to the others in the group: we all went through the same! We all know how it feels. When we talk, the one listening has felt the same thing one is feeling. One talks with people who can really understand you. . . . That makes the difference!

They Are Convinced They Did Everything Possible for the Child’s Well-Being.  The death of a child may generate frustration and guilt for the parents because they may think they failed as protectors. Nevertheless, those who manage to revive felt they did all that could have been done for their child, as the parents gave him/her total care during the disease and were by their side at the moment of the children’s death. Also, the parents felt that the health care professionals did everything they could for their child, not only professionally, but also by giving them loving care: When you accept that no one’s guilty, that everything possible was done by the medical team and the family . . . well, that gives you a sense of calm which allows you to accept things, and turn the page and look forward. And that is very important. . . . Then, we did everything that was possible for us, and we cooperated with the team so that they did their best.

They Experience Grief and Suffering as Part of a Continuous Process. The death of a child causes parents such profound pain and suffering that it is very difficult to heal. Parents who have been able to survive relate that one of the aspects that helped is learning to accept and bear their pain and suffering for the rest of their lives. This entails facing reality as it is, although this causes pain and suffering. They also recognize that giving themselves space to express their feelings allows them freedom from, and an out let, in part, for their pain, and in so doing are aware that everything experienced has a reason for being, which they discover throughout the grieving process: Not because the fact that our child has left, everything comes to an end. Yes, our grief and suffering are here, our pain is here. These will be with us forever, but we have to learn to live with them. That’s something you do not learn overnight.

They Maintain a Permanent Connection With the Dead Child, Something That Comforts Them.  For parents, the death of their child is in body only, because for them the spirit of the child still exists. They firmly believe that their children are angels, which comforts and allows them to be connected in a permanent bond with them. Moreover, they share all the experiences and emotions, such as sadness, fear, guilt, anguish, and joys of daily living, in an ongoing dialogue. This “special bond” starts during the farewell and then is revealed and strengthened in many situations such as feeling that their child always accompanies them, dreaming about them, or even experiencing supernatural experiences. These experiences help them feel cared for, comforted, and loved by their child, generating in them the peace and comfort they seek. For them, pain rekindles at not being able to see or hold them. It is this link that keeps their children alive in their heart: And the doctor tells me: “Mommy, say goodbye . . . say goodbye as they need to go.” My husband is looking pale, pale! So . . . Now it’s my turn!    I grabbed him, hugged him, still holding his little hand . . . and spoke in his ear: “Honey, I love you, I love you very much, thanks for being my son . . . your sisters are going to be super good, your daddy loves you very much, I also love you . . . but now I want you to go to rest . . . rest!    Now rest, because I too will rest . . . you need to now, because it’s been a lot. All I’m asking is for you to look after your sisters, your daddy, your granny . . . and to give me strength. I love you, I love you, I adore you . . . but now go to rest. I love you so much!    After I said that . . . he breathed his last sigh. (E8) I’m fine, baldie. Keep on helping me and keep giving me the strength to stand on my own feet every day. I always say: My child is alive in my heart! And he will always be in my heart. The day I forget my child, my child will die! I tell you: I think of him, I talk to him.

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Ascribing a Sense and Meaning to the Life, Agony, and Death of a Child For parents to attribute meaning and significance to the life, agony and death of a child helps them keep going, knowing that their children had to live this unfortunate experience to leave a message of life. This message is based on the way they faced each experience, from birth until death. This process takes place when they recognize and attribute special qualities of their child such as: possessing a clear mission in life, having the strength and courage to face all adversity, and developing an extraordinary spirituality at such a young age. From these, parents discover meaning to the incomprehensible and painful experience of losing a child to cancer, and thus feel privileged to maintain the legacy of these children, sent by God. Understanding the Mission of Their Child. Parents attributed special qualities to their children that give meaning to their brief stint in this life and enabled them to fulfill their mission, for they are bearers of a message of love, which must be understood, experienced, and delivered through helping others: I feel that Matías (3 years old) came to teach me something, it was his mission. . . . Maybe his mission was to make me go through this, this tremendous grief and sorrow . . . so that I could know about all this pain and suffering, then I would be 100% ready to shelter another father, to understand a mother, to understand what they are going through, to understand their tears and their grief.

They Value the Exemplary Strength of Their Child. Children with cancer undergo aggressive and invasive treatments that can prolong hospitalization, and thus their suffering. However, they showed great strength and courage in facing these situations, leaving no one indifferent, becoming living examples for adults (health team and family). This made parents value more strongly the ability and maturity of the child, often feeling comforted by their own children, especially in difficult times: For me, Matías (6 years old) was a fighter, a champion. He never gave up, he always stood up and fought, he wanted to keep on living.    If something happened to me . . . I have to carry on, I must go on.    For me, he is a superhero.    He is giving me his courage now in order to survive.

They Admire the Spiritual Development Achieved by Their Child.  For parents, the child had a spiritual development that allowed them to have a fluid and harmonious communication with a Higher Being, giving them the strength

to overcome all difficulties. This is reflected in memories of experiences that the child had in life, in which the parents strongly believe that the child managed to establish a very special and unique bond with God: I said to him—“Julito [3 years old], do you want me to hand you over the small Virgin Mary?” . . .—“Yes, my Holy Spirit!” . . . He hugged her, he kissed the Virgin Mary. The day before he died, after having said goodbye to everyone, I asked him:    “Do you want me to give you your Holy Spirit?” . . . “Yes!”    The child looked like a cloth, he was very weak, so I helped him to sit up, he hugged the image and I asked him: “Do you want to sing to the Holy Spirit?”    He stuttered, sang, and he could hardly speak. Then both of us began to sing:    “Holy Spirit, come, come . . .” And he sang all of it, with such composure!

Helping Other Parents Through One’s Own Experience The main phenomenon that occurs in the this is in parentheses previously and should be consistent parents is that in truly experiencing their loss after the death of their child, they realized that what they had gone through had a higher purpose, which was part of the legacy and mission given by their own children. Feeling themselves to be living testimonies of the possibility of survival, they felt compelled, a responsibility, to help other parents in similar circumstances. This is facilitated by the sensitivity given to them through their own experience, and the authority to advise and support other parents in similar conditions. For them, the way in which their child’s life is acknowledged and commemorated is by being actively involved in the “Corporación Re-Viviendo,” which allows the life and mission of their deceased child to transcend death, keeping their children’s memory alive. These parents state that the death of a child is devastating, but to actively work through the grief allowed them to change all that pain and suffering into love, which was manifested in the selfless support to other parents in need. To Be a Living Testimony of the Opportunity for Reviving. Parents feel a responsibility to be living testimonies that after such a devastating loss, that is the death of a child, that one could survive. Nevertheless, they were able to get up and rebuild their lives with the pain and suffering that this loss meant: I believe in this thing of . . . speaking out from my heart. Believing I can assist some other mother. Believing I am doing the right thing when I speak to somebody else. That I

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Vega et al. do my best to deliver my testimony well, to deliver my teaching to another mother who is going through this. I ask God to give me the wisdom so that the other person feels better, and I think I succeed in doing it. To deliver something, and, afterwards, analyze it and realize I did it well . . . talk to the person and hear them say: “I felt better after the conversation we had.” Because I experienced it, and I fell into the hole, because I went through all the stages—I felt really bad—and step by step I made it back to the top, I came back in spectacular fashion, in the best of shape.

Supporting Other Fathers and Mothers During the Death of Their Children and the Mourning Period.  Pain and suffering transformed into love become materialized through the accompaniment of other parents who are experiencing the same experience of loss. This task is accepted as a beautiful and rewarding challenge, which they are proud to perform, because it is the legacy that their children left them. All this reaffirms their task, the new meaning that their life now has, whose value is incalculable and unique for those in need: I think Matías’s brief existence presented us, his parents, with a little task on Earth . . . to understand other people’s pain and sufferings.    A month had gone by since Matías’s death, and I went to the hospital to give encouragement to a mother whose son was dying. On that day, the mother happened to be away, but I saw the child. He died 3 days later. Then I went there again, to give her my support. I stayed with the mother in the same room where Matías had died. I accompanied her to the morgue to recover her child’s body, and he was lying on the same bed where my Matías had been lying before. I couldn’t sink, because I was there to help and support her.    I won’t lie to you: when I got apart from her for a while, I was overwhelmed by my own memories. . . . I had a very bad time at that moment. But I also felt glad because I had been able to help somebody! I knew what she was going through at that moment.    So, perhaps this is the task Matías left for me. . . . Because, who is more qualified than us, who already went through it, so we can help other people?

To Have the Child’s Life Transcend Through Helping Other People. The experience of losing a child leaves a deep mark on a parent; however, what marked these parents more was not the loss itself, but the strength, love, and hope that their child gave them during their illness, pain, and death. For them the life of their children must transcend beyond death, and they feel responsible for this. They must also convey the message that their child has bequeathed them: the lives of their children transcend beyond time, immortalized in love that they deliver to others, transforming all the pain and suffering into love: This is the way I honor Matías. I immortalized him in Re-Viviendo. There I meet him, there I feel him present. And

I do it from the bottom of my heart, with love. I like doing it, because I feel Matías is there! I immortalized him by working as a volunteer. With the memory of my son, I will revive. Matías is immortalized in the things I do, in the good, in the beautiful things.    To live all these processes. . . . It has to be questioned, but always with the help of another. It’s like the movie “Pay It Forward,” because since watching it I take it as an example. If I help this mom, she’s going to help another, and so on. And we will be, to some extent, a better world. . . . To transform all that pain and suffering that we felt into love, to help others who are going through what I went through.

Discussion The mourning process involves a personal effort that is active and painful; it is a challenge that implies a physical, intellectual, emotional, and spiritual burden for the relatives of the dead person (Guíc & Salas, 2005). During such process, the mourners undergo a series of changes that are timeless, makeing the process dynamic and personal (Chajud & Estremero, 2004; Riley, La Montagne, Hepwoth, & Murphy, 2007), a process that Neimeyer (2002) describes as a spattered reorganization. This phenomenon was observed in the parents who were interviewed during our research: they said that, after a time, they managed to elaborate their grief, and, finally, they ascribed a sense to such a bitter experience. To be able to discuss the unveiled phenomenon, we will present each of the essences separately, in the same order in which they were present in the findings.

Transitioning From Surviving to Reviving Although mourning implies sensations and reactions particular to each person, some of them may be identified in most of the parents. We saw that the fathers and mothers agreed that, at the first moment and following the death of their child, they felt very distressed, without any desire to get up in the morning, or to work, or to feed themselves, or to do their everyday activities. Nevertheless, it was at that time of utter anguish that other people showed up—in some cases their partner or their other children—who made them reflect and consider that they had to support their families and carry on living. This is consistent with what Klass (1999) described in an article and the studies done by Thompson et al. (2011) and Alam, Barrera, D’agostino, Nicholas, and Schneiderman (2012). In the latter study, it was observed that, after their child’s death, mothers spent their time caring for surviving children and maintaining family life, to the detriment of their work. In this way, the parents

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acknowledge that their actions in coping with their own mourning had a positive effect on the surviving children, maintaining the family’s integrity and unity, which gave them the emotional and psychological security of the relationship. As the results showed, the parents considered that their family’s support was a fundamental pillar during the first months after the loss of their child. However, it was the experience of meeting an equal and of having found a place where they felt welcomed and supported, that for many became a definitive landmark for the process of working through their loss. In this regard, different authors state that the family’s support and the society’s backup, through self-help groups, decreases distress and encourages confrontation loss, by delivering a meaningful relationship network (Dumont, Dumont, & Mongeau, 2008; Hazzard, Westons, & Gutterres, 1992). That is why it is necessary for the health team to generate supportive interventions aimed at bereaved parents that allows for active accompaniment which is helpful in coping after a child’s death (Aho, Tarkka, Astedt-Kurki, Sorvari, & Kaunonen, 2012). Consequently, the mourning process within this type of community group makes it possible to talk from a person’s own reality and experiences, with unconditional and nonjudgemental support, especially when the members have the death of their children due to similar causes in common. (Grinyer, 2012; Heiney, Ruffin, & Goon-Jonhson, 1995; Thompson et al., 2011). For each of the interviewed parents, the experience of having been able to take care of their child and to give him/her everything that was within their reach generated peace of mind for them. This is consistent with the findings in the studies by Linda and Johnson (1997) and Dumont et al. (2008), who note that the feeling of “having done their best” generated a positive impact during their mourning process, since it helped assign meanings to their grief, sorrow, and to the loss of the loved one. As to the attention given by the health care professionals, for the interviewed parents, there were 3 basic elements that made them feel confident that the team had done their best for their child: they showed sincerity, were respectful at the moment of death, and the parents felt that their child was attended to in an efficient, timely, and loving way. This matches what Dumont et al. (2008) and Lynn (2006) state, when describing that the families were grateful for the humane care provided by the team. The parents interviewed during the present research said that, as time passes by, they realize that the grief and sorrow they experienced is part of a process leading them to a personal growth and to discover a meaning for the experience they underwent, as Neimeyer (2002) affirms. As in the study by Aho et al. (2012), the ability of parents to express their pain helped them in dealing with the loss; however, these authors showed a difference between

fathers and mothers, where the latter referred to feeling more freedom to express themselves. Added to this is the statement by Boyraz, Horne, and Sayger (2012), who showed that relatives have the ability to create a supportive environment, allowing parents to find benefits from difficult life experiences, being more marked in the bereavement, and are able to share their feelings, as are those with more outgoing personalities and those who participate in social support groups. During the process of survival, the parents stated they were continuously linked to their child, saying that this situation generated a great relief and calm regarding the physical loss. For them, this link is enhanced with the ritual of saying goodbye, as Fonnegra de Jaramillos (2001) and the Kars et al. (2011) note. Although traditional authors insisted that mourners should “forget” through detachment and a redirecting of their emotional energy toward other links, contemporary researchers, like Rando (1995), Silverman and Klass (1996), and Neimeyer (2002), maintain that the mourners remain linked to the dead by a transformation of their symbolic connections. For Neimeyer (2002), one of the challenges for the mourner is to reconstruct the relationship with what was lost, that is why the continuity of the link becomes a healing factor in the mourning process (Baker, 2001; Klass, 1997; KüblerRoss, 1993; Thompson et al., 2011). This phenomenon was also observed in the Foster et al. study (2011); however, the degree of connection depended on the prior relationship with the dead child and individual development needs of the bereaved. Moreover, Cabodevilla (2007) remarks that these are the links that seem to bring comfort to the mourners and encourage them to carry on living. In the present investigation, the parents said they had supernatural experiences that helped them cope with their pain. Similarly, the study by Kwilecki (2011) confirmed that this type of experience allows the parents to give meaning to the experience, and in turn, face the loss spiritually. One of principal findings of the present research revealed that this link was a real phenomenon for the interviewed parents; however, the orientation of the link had changed: now, it is the parents who feel protected and cared for by their children.

Ascribing a Sense and Meaning to the Life, Agony, and Death of a Child For the parents interviewed, the most important essence that allowed them to revive and give a sense and meaning to their experience was when they attributed a special mission to their children and acknowledged that the children had an admirable strength and spiritual development

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Vega et al. that made them special and unique, which was consistent with the findings made by Wiener, Aikin, Blecher, and Hirschfeld (1996). So much so that some authors affirm that, for the parents, the experience of having special children made them feel fortunate, as being part of God’s design (Engelkemeyer & Marwit, 2008; Kübler-Ross, 1993), and had the confidence that life continues after death (Linchtental, Currier, Neimeyer, & Keesse, 2010). It was belief in a higher power that enabled some parents to make sense of the loss, which was also observed in the meta-analysis conducted by Hogde and Horvath (2011), which indicated that the relationship with God and spiritual practices of those in mourning provides a sense of transcendent purpose. Arnold and Buschman (2008) state that for the mourning parents it is very important to find a positive reason for the meaning of their child’s death and to feel that all their grief and suffering has not been in vain. In the present research, some parents admitted they feel calm after the death of their child, because they assumed that he/she had a mission in his/her life that they accomplished before dying. As in the present research, the studies by Wheeler (2001) and Dumont et al. (2008) show that it was the attitude of the children that influenced the strength of their parents when accompanying the child during the last moments of their lives; thus, the parents turned this experience into a life lesson for themselves and those nearby.

Helping Other Parents Through One’s Own Experience The fathers and mothers interviewed make the life of their children transcend by helping others, starting from the premise that they are a living testimony of reviving. These findings were consistent with what Neimeyer (2002) stated in his book, in which he says that when the mourners are able to reinvent themselves, they feel that their life is richer because of all they have learnt, trying to make the best out of each day, and being an example of that work for other parents. Even in the research by Lichtental et al. (2010), it was shown that parents found benefit in helping others and reported low levels of maladaptation to grief, thereby decreasing the risk of post-bereavement grief disorder syndromes. Moriarty, Carroll, and Cotroneo (1996) state that parents perceive there is a need to share the experiences they had and to communicate them to the health care professionals and other parents, by participating in studies or interviews. This need was also seen during the present research, since parents considered the interview and research as an opportunity to pass on their lived experiences to others.

All the aforementioned confirms the belief held by the interviewed parents: that putting themselves at the service of other suffering parents makes their dead children’s life transcend, which is also affirmed by Neimeyer, Prigerson, and Davies (2002); Davis and NolenHoeksema (2001); and Lynn (2006). This even leads Raingruber and Milstein (2007) to state that for parents it is important that their child is acknowledged as a being that made a contribution to the world, originating a “circle of meanings” in which the dead child can exert a positive influence on more than one person. This is what the interviewed parents called “continuing the mission of their children,” and what Alam et al. (2012) describe as “building a legacy.”

Study Limitations The authors admit that one limitation of their study was contacting all the parents who were members of a foundation; therefore, the experiences of these parents only represents this specific group. Hence, the findings cannot be generalized to all those parents who have lost a child. Another limitation is the impossibility of including parents who were depressive, on the recommendation of the psychologist. That is why the authors believe it is important to collect testimonials from those parents through a second phenomenological study with a multidisciplinary approach aimed at parents who live a long grieving process, in order to understand what were the experiences that marked them negatively during illness, death, and postdeath of their child, and thus develop specific interventions from their own needs and experiences.

Study Implications for Nursing For the oncology health care professionals, these findings challenge them to provide comprehensive and humane care throughout the period of the disease, especially during the terminal phase. Although there are many theories in nursing that emphasize humanized, comprehensive, and personal care of the patient, on this occasion, the work done by Dr Jean Watson (2002), through her Transpersonal Theory, acquires relevance. Watson showed how the care of the patient is developed through the “relationship of curative care,” which generates a practice of binding nursing characterized by sympathy, care, love, refuge, truth, trust, credibility, honesty, expectation, courtesy, respect, and communication, where the main issue is the “caring moment” that every nurse must take into consideration (Quinn, Smith, Ritenbaugh, Swanson, & Watson, 2003). When considering the care of parents who are in mourning, the interventions must cover a continuous

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accompaniment and active listening, which allow those parents to close unsolved questions related to their children and offer them tranquility so that they do not feel uncomfortable or angry, as there will be fluctuations in their emotions (Welch, 2008; Wiener et al., 1996). Moreover, humanized models of care must be implemented nationwide, through the Program of Pain Relief and Palliative Care, so as to generate instances of accompaniment to fathers and mothers in mourning, on the basis of interdisciplinary and holistic care, which will give those parents time and permission to tackle the process consciously, and thus reestablish themselves as people and parents. This will give them the chance and the time to engage in different tasks to achieve their own personal and spiritual growth (Boyraz et al., 2012; Cabodevilla, 2007). That is why health care teams should facilitate the development of support groups of parents who overcame their mourning and wish to assist other parents, like “Corporación Re-Viviendo.” The interviewed parents acknowledge this support that helps them recover their interest in life (what they call “to revive”), to reconstruct the sense of this life (by taking part in “Corporación Re-Viviendo”), and to rejoice in life once more (enjoying life by helping others). As previously mentioned, it is imperative to include this subject in the nursing curriculum, both in undergraduate and postgraduate levels, to socialize comprehensive and humanitarian care for the child who is at a terminal phase due to any health problem and to support? his or her parents and family. Finally, it is necessary to design studies in order to understand this phenomenon in siblings and healthcare professionals themselves. Acknowledgments The authors would like to express their gratitude to all the parents whose cooperation and sincere participation made this study possible.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.

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Author Biographies Paula Vega, NM (Nursing Midwife), BSN, MS, Is an oncology pediatric nurse and assistant professor in the School of

Nursing at Pontificia Universidad Católica of Chile. Her research interest include: grief, palliative care in children with cancer and complementary therapies. She is member of the nurse commission in the National Programme for Infant Cancer of Chile. She participate in a multidisciplinary team that accompany bereavement parents in the Roberto del Rio Child Hospital. María Soledad Rivera, MS, PhD, Is an associate professor in the School of Nursing at Pontificia Universidad Católica of Chile. She has extensive experience in mental health care. She is focuses in phenomenological qualitative research and had conducted research in perinatal bereavement. Rina González, MS, Is a pediatric nurse and associate professor of School of Nursing at Pontificia Universidad Católica of Chile. Her work is focuses on the palliative care in children with cancer. She is member of the nurse commission in the National Programme for Infant Cancer of Chile. She participate in a children palliative care team at Dr. Sotero del Rio Hospital.

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