Seeking an Adjustment from the Unnatural to the Supernatural: The Experience of Losing a Child from Cancer in Colombia

Design

This qualitative study was conducted using the method of grounded theory.[18] The study attempts to understand the experience of losing a child with cancer in Colombia through an constant comparison, epistemologically based on the principles of symbolic interactionism which seeks the understanding of basic social processes.[18] This methodological approach recognizes that the interaction between the researcher and the participant is a fundamental factor in the research process and that it has an impact on the analysis and the interpretation of the experience that are developed. Parents whose children died from cancer were enrolled between January and August 2019.

Ethics

The study obtained ethical approval by the health-care institution, and all participants agreed to participate voluntarily. Doubts about the study were solved, and the participants signed the informed consent.

Participants

Eighteen parents of children who died from cancer in a public hospital for cancer control in Bogota-Colombia during the first semester of 2019 participated in the study. They were located by checking the medical records of the children who died at the hospitals' pediatric ward and invited to participate in the study on a telephone call made by the researchers, all parents who were approach agree to participate. The following inclusion criteria were met: (1) Parents whose child died from cancer, (2) their child died 5 months to 5 years before, (3) parents living in Bogotá, Colombia, after the death of their child, and (4) parents over 18 years of age. Parents with hospitalized children at the time of the study were excluded. Table 1 shows the participants' demographic characteristics.

Interviews

After agreeing to participate and checking the inclusion criteria, the parents chose between being interviewed at home or at the hospital office. In-depth interviews were used for data collection[19] since they were considered appropriate to explore meaningful data for participants about the grieving process. All the interviews were audio recorded and done individually, each of the two researchers interviewed nine participants. The two researchers were experts in in-depth interviews and grounded theory studies and also had experience in oncology pediatric nursing. For the interviews, a trustworthy atmosphere was created so that the interviewees could freely express their opinions, no judgments were made about the ideas or feelings expressed and therapeutic strategies were used to manage the emotions triggered due to remembering the experience of losing their children. The interviews were structured to have a therapeutic approach since it was a difficult and painful experience for the participants.[20] The research team created the following questions based on their experience in this area and also based on the interviews of studies involving grief. The questions were: What has your life experience been like since your child passed away? How has the process of facing your child's passing been? After these two initial questions, the researchers asked other questions to further complement the answers given by the participants. Interviews lasted between 30 and 60 min.

Data analysis

Grounded theory was the method used to address the phenomenon of the study because it enables the researchers to identify the patterns and critical points in the grieving process that can offer guidance to nursing on developing concepts and explanatory theories of the phenomenon. The data were collected following theoretical sampling and analyzed through constant comparisons until theoretical saturation was achieved.[18] The interviews were transcribed completely word by word, and then stored in ATLAS.ti.

In order to conduct the analysis, the Corbin and Strauss'[18] approach was used. These authors consider a nonlinear process consisting of (a) open coding (line-by-line creation of codes), (b) axial coding (grouping of several codes with similar characteristics), and (c) selective coding (integration in a single category and validation of relationships among categories). Both data collection and data analysis took place simultaneously. This way, each interview that was conducted was analyzed before starting the next interview. Data analysis was carried out continuously from the first interview until saturation was reached, by the two researchers (Sonia Carreño and Lorena Chaparro). While analyzing the interviews, the researchers began to see a constant repetition of the attributes of the categories, which showed that there was no new information emerging from the data. When differences in the analysis arose, the third researcher (Mauricio Arias) helped to resolve them. During the analysis and coding process, codes were categorized and interpreted within the context, and the research team validated and defined the core category. When the analysis concluded, a validation of findings that included the participants was carried out.

In addition, considering that this research was conducted in Colombia, by Spanish speakers, data were collected and analyzed in Spanish and then translated into English by a certified translator. As previously mentioned, the credibility criteria were followed when including in the results extracts from interviews that reflect the proposed category, auditability by giving a detailed account of the method with which the research was carried out, transferability when making a clear description of the research context and the sociodemographic characteristics of the study participants. In this way, the criteria to maintain the methodological rigor of the study were met.[21]

Crossing a desert

Crossing a desert includes the bereavement experience from the moment the parents learn of the cancer diagnosis of their child, which is when the feeling of loss begins. The subcategories describe the coping process, impact, and expectations of the parents at the beginning of the experience, when they face an impossible situation they refer to as “unnatural.”

Discovering the unnatural

This is the moment when the parents, after carrying out the necessary tests to know what is going on with their child, receive the cancer diagnosis. A moment that they describe as an instant where everything collapses. The parents go through an emotional shock when they hear the word cancer, due to all the cultural beliefs around this disease. Moreover, parents acknowledge the feelings of anger and bewilderment, they do not understand the reasons behind this situation, and consider it unfair and unnatural because it does not follow the normal course of the life cycle in human nature. For instance, a participant compares death between adults and children: “… My father died, then my mother died, okay? Eight months after my mother's death, my daughter died. So, I said, the comparison is… yes, all of them hurt, but the pain of having lost a child has no comparison. Yes, I miss my mother and that's painful, but maybe she's already completed her life cycle; but losing a child and at that age is very hard.” P09

Imagining the worst

After the shocking news of their child's condition, the parents try to process all the information around this situation, looking for reasons behind an awful reality they do not understand. This is how they enter a stage characterized by uncertainty, fear, and lack of control where they try to make sense of the news about the disease and consider the options they have. While some of them are skeptical of the diagnosis and ask for second opinions, others accept it with resignation and receive recommendations from the healthcare team or are eager to go through treatment, even knowing that its results may be unpredictable. This caregiver discusses his constant feelings while he imagined the worst: “I got up every night worried to look at him and see if he was okay if he was breathing because I was more afraid that I would get up and he would no longer be with us.” P18

Changing one's life completely

Chronic diseases generally involve a change of life. However, cancer entails a greater change, effort, and dedication for its management and care, triggering alterations in family and work aspects that are perceived negatively because all the attention is focused on the child. Thus, the child's disease thwarts the plans the parents had for themselves, their family, and their child.

At work, some parents experience isolation, and in some cases, the loss of their job, because they spend most of their time with their child. This may lead to bankruptcy when there are no other sources of economic income. At home, family life is significantly affected, because the child's siblings are left aside at that moment, not by the parents' choice, but because the complexity of the situation demands it. Furthermore, the parents set aside their couple's relationship and shut themselves off, leading to marital problems by negligence and increasing family dysfunction. This mother explains how her child's disease changed their family life:0 “As for family, it was completely destroyed. There were no more family lunches or gatherings. In December, it's a complete disaster…a complete disaster. My Christmas was ruined.” P02

Clinging to hope

As a way to deal with this difficult, uncertain, and painful situation, parents seek support, guidance, and information to hold on to. On the one hand, they focus on learning about treatment alternatives and scientific developments in cancer management, pinning their hopes on it. On the other hand, they look for relief in friends and relatives on whom they rely to face the situation. Similarly, through spiritual support, some parents try to keep the faith. They make promises to a superior being waiting for divine messages and answers, even though some parents think their circumstances are divine retribution. This mother shares the promises she made to God to heal her son: “My child said to me, 'Mommy, it says I'll heal you'. I said to him, 'Well darling, then believe God'. And later I said to myself, 'Dear Lord, if you are going to heal my son, I thank you infinitely, you know that I would give my life for him.'” P18

Getting what you don't deserve

As they try to adapt to the changes brought on by the disease, parents start to question themselves and allow themselves time to feel their emotions. They perceive this experience as tortuous, as an inner burial procession that causes an indescribable pain, and makes them feel constantly worried and numb as if they were the spectators of their own tragedy. That is when they wonder why this has happened to them and call God unfair and selfish. A father put it as follows: “What do I have to talk to Him [God] about? I was blinded by pain and rage. 'Well, then you tell Him to let you stay with me, ask Him why he is so unfair, why He brought you to me if He was going to take you back when you were seven? What for?.'” P05

Dying while alive

This category and its subcategories describe the expression and management of feelings and emotions that frame parents' experience when they realize their child has no options of curative treatment, their child loses the battle with cancer, and dies. This situation is called by them as dying while alive.

Fighting a losing battle

In this part of the grieving process, parents face the fact that the treatment has been unsuccessful. They say that although they have followed all the recommendations, there is no improvement; therefore, they assume the situation is a victory for the disease. For parents, this is a desperate struggle in which they are not in control and inevitably feel powerless against the progression of the disease, especially because the children are in a vulnerable state in which they need their parents' care and protection. As one parent puts it: “When you realize it, you can imagine. So much struggle, so much hurry, so much effort, not just from me, but especially from her. You know who my girl was: A fighter. She deserved to win.” P13

Clinging to a miracle

With the situation out of their control and given the lack of improvement in their child's health, parents do not lose hope that the whole treatment would have a positive effect and cancer would go into remission. They do not give up and seek the strength to go on through their faith and beliefs that the impossible may be possible, if they cling to God, waiting for divine intervention that will bring their child back to health. They also resort to extraordinary treatments, and even to their spiritual beliefs for getting answers. A participant expresses this situation as follows: “Oh good Lord, will this struggle be any good? Sometimes he'd get better, then our hopes would rise again, and when they told us there was nothing to do… in that moment… oh… that was very hard. It was very hard for me. Those days were terrible.” P08

Wishing to stop time

When parent realize that their child's treatment is no longer curative, they feel aimless and start fantasizing about going back in time and having done something differently. Parents miss how their children were and how their lives worked before cancer. When envisioning the situation of losing the child, parents say they would never be ready for their children's final moment and would wish to stop time. A girl's mother puts it this way: “Because you always say that maybe you're fully ready, but if anything should happen, you weren't fully ready. Those are things that amaze you, that leave you at that moment, like, aimless, in darkness.” P06

Falling into a hole

The moment when the child dies is traumatizing for parents. They describe it as an unbearable pain and compare it to a shipwreck where they lose faith to be rescued. They feel shattered and incomplete because a part of them dies with their children. All feelings of guilt, despair, disappointment, and anger come together at this moment. Bereaved parents feel like they were dying, they shut themselves off, isolate themselves, become aggressive, and go through depression. This is how a mother describes her negative feelings: “Imagine me, staying at home. That was terrible for me. On my days off I cried and looked for my girl's stuff. It was a terrible pain, and then, the most terrible thing that could have happened to me was that my relatives left me alone.” P13

Wishing to die

With their child's death, bereaved parents feel their life is an arid and dry desert where they are lost, and it makes no sense to continue living. Emotionally, bereaved parents are heartbroken, so they fall into a self-destructive, self-punishing routine in which they isolate themselves. The difficulty of letting go their beloved child makes them wish to die and have suicidal ideas and even suicidal attempts because they cannot otherwise cope with grief. A father describes his longing for death to come as follows: “Before what happened with Alejo, talking about death scared the wits out of me. Now… I await death, without fear, even with longing … longing for the moment I meet my son, and when death comes, then it would simply be a step, to meet him.” P04

Coming back to life

This category and its subcategories describe what grieving parents do, feel, and think in order to overcome gradually the loss of their child. It includes reorganizing their lives, cherishing good memories, and transforming the experience to help other bereaved parents. Constantly remembering the child and the hope of life after death gives this category the meaning of “supernatural.”

Rising up to fight new battles

For parents, the struggle does not end when the child dies. It persists for a long time, because it does not represent the loss of any loved one, but that of a child, and despite the pain, they understand at some point that life goes on and does not stop. It is for this reason that they look for the strength and motivation to move forward, take up the things they had put aside and try to reorganize their work and family lives. Although it is almost impossible for them to move forward, bereaved parents endeavor to rise up and stay motivated by their child's memories. An example of it is told by a participant: “No, you don't have like enough strength, I mean, this is a 'get over it, because she's gone'… it's not easy, but yes, I did focus a lot on the dream that the two of us [mother and daughter] always had.” P05

Valuing what you have experienced

Along with the memory of their deceased child, bereaved parents begin to cling to the good moments they lived with their child, as a strategy to accept what happened and try to heal internally. To do that, bereaved parents fill their minds with positive thoughts such as “my child finally rested from suffering” or “my child is in a better place.” They place great value in the life they shared with their children and remember small details about them and the teachings they received from them. Bereaved parents also try to recall anecdotes and precious moments that help them to carry on with life. The mother of a girl who died at the age of 9 relives a happy memory as follows: “A week before her passing, she was very upset and her arm hurt a lot. To soothe it, she sang and turned on music and we pretended that she performed in a concert and we were spectators. She sang a song that said '…and I already won this battle…' and looked at us and said 'And you must believe so because I already won this battle', that's how the song ends. So, that's also useful to you. It gives you strength, all those videos she left, the photos, the memories….” P10

Reestablishing bonds

For grieving parents, reestablishing affective bonds is a way of reorganizing their lives after their child's death. So, they try to take part again of the social life they had left aside during their child's disease and they start to connect with their partner, their other children, and their friends again. Reestablishing relationships allows bereaved parents to feel accompanied during grief. It also allows them space to express their feelings, strengthen family ties, and even welcome new family members, such as a baby. With the learnings from this experience, bereaved parents who managed to go beyond their grief busy themselves with sharing with others and even establishing new relationships with a new partner or new friends. This is how a father talked about reestablishing relationships: “Well I think that, for us, more than anything else, I think what's helped us is how united we've always been, do you know what I mean? We have been united all along, more united, closer every day, more and more, I mean, we've never separated in any way. We've always been as united and supporting each other that it has been the most important thing that has helped us a lot.” P06

Keeping with love the memory of the child

The grief after a child's death is not completely overcome; it is accepted, but bereaved parents never forget their child. They understand that the child's physical presence is no longer there, but his or her spiritual presence prevails. Bereaved parents evoke the memory of their children and remember them as virtuous, unique, and incomparable beings. Such parent-child bond is unbreakable. Remembering is used as an action to relive beautiful moments they shared with their child when they were alive and this motivates them to go on and reorganize their lives. For example, a father told how he remembers his son through videos he made on his phone: “I took a photo of him sick and it was to see all that process before. And I said this to my wife 'That's what we have to remember about Alejandro: Those beautiful moments, those games we played, outings we went on, what we shared together, right?' Those were beautiful things and it's nice to remember because he is… he was our prince charming.'” P04

Getting ready to help

The other way for beavered parents to overcome grief is by serving others who have gone through similar experiences, that is, they use everything they learned from the experience with their children, and even what they learned from their children themselves to go along with other families and provide them with counsel and support. For bereaved parents, helping others is part of a mission they should accomplish and it is a way to leave a legacy of what they went through with their children. This is a strategy that enables parents to be empathic and supportive without expecting anything in return, they just want to transcend and achieve spiritual well-being. A participant put it as follows: “In my heart I have every little thing kept as a treasure. When I talk about Sharon with other people, it's like a breath of life for them and they say to me that I should go there and help others. We want to start an organization that would be called 'Heart and a Half'.” P05

Seeking adjustment from the unnatural to the supernatural

The grieving process in bereaved parents does not have a specific starting point, for parents the bereavement experience is complete and begins at the very moment the child is diagnosed. The child's passing is not regarded as a specific period of time, but rather is described from the whole experience of the disease. The grieving process is especially complex and begins when the parents face the diagnosis of their child. At that moment, the situation is perceived as contrary to the natural course of life, as “unnatural.” In spite of all efforts, faith in treatment and care, and the waiting for a miracle, many parents lose the battle against the disease, and with their child's death, they think they are getting what they do not deserve, wishing at this point to be dead. After their child's death, bereaved parents in search of a meaning consider reorganizing their lives, and to do so, they turn to the memories of their child and what they lived together. At this point, an unbreakable bond of love is created, a bond that goes beyond the physical, a “supernatural” bond that helps parents move forward.

Implications for practice

The results from this research allow health professionals to understand thoughts, emotions, and sensations experienced by parents when their child dies from cancer. It should be noted that parents highlight the important role of health-care staff in keeping honest, constant, and assertive communication with them, in which they are willing to discuss the implications of the end-of-life care and the death.[16]

Therefore, health professionals who care for this population must be emotionally prepared to establish a genuine relationship with the child and his or her parents, helping to provide opportunities for creating memories, special moments, and provide spiritual or religious assistance. Likewise, interpersonal relationships should be developed to enable health professionals to be empathetic and forge bonds of trust, which are highly valued by caregivers.[14] Finally, these results help to understand and prioritize parents' needs during grief, which will enable the development of interventions in which bereaved parents are continuously accompanied and empowered to share their experiences.[33]

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.