THE EXPERIENCE OF SUFFERING IN CHILDREN WITH CANCER- A META-SYNTHESIS

From ISSUE 5 - February 2004 - www.thesufferingchild.net

Authors: Iris Epstein RN, MN; Patricia Orr RN, BSc( H), BScN.; Bonnie Stevens RN , PhD The Hospital for Sick Children, Toronto, Ontario, Canada Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada Corresponding author Iris Epstein, RN, MN Faculty of Nursing University of Toronto 50 St. George Toronto, Ontario Canada Email:iris.epstein@utoronto.ca Tel: 1-905-978-2392 Key words: child, suffering, distress, cancer experiences ABSTRACT Cancer is the leading cause of disease related death among children and adolescents 1. Despite the increase in survival rates, children and their families still face many challenges that make life with cancer difficult to bear2,3. Recently, there has been a call to alleviate the suffering of dying children 4, 5 Suffering has been viewed as a fundamental human response to loss: loss of health, loss of a painfree life, and loss of self 6. According to Morse (2001) suffering is a process and movement between two states: emotional suffering and enduring. On the basis of this conceptualization of suffering, the purpose of this paper is, through a qualitative meta-synthesis of studies on children with cancer, to elucidate the meanings and behaviors of the experiences of cancer in the context of suffering.

INTRODUCTION Cancer is the leading cause of disease related death among children and adolescents 1. However, today more children are surviving cancer than in the past2. Despite the increase in survival rate, children and their families still face many challenges and endure suffering experiences that make life with cancer difficult to bear3. Recently, there has been a call in the literature to alleviate the suffering of dying children 4, 5. However, there is limited discussion in the literature regarding children experiences of suffering during illness and their related s responses. Since nurses are at the bedside through out the course of the illness course, they are often the source of primary-support for those suffering. Thus, understanding suffering and the patientsresponses to suffering is at the heart of nursing care 7. However, before suffering can be alleviated, it must be understood. Suffering has been viewed as a fundamental human response to loss; loss of health, loss of a painfree life, and loss of self 6. Furthermore, Cassel (1982) defined suffering as a struggle occurring when impeding destruction of the person is perceived and that it an continues until the threat of destruction has passed or until the integrity of the person can be restored in some other manner (p.33). Morse (2001) views suffering as process and movement between two states; suffering and enduring. Enduring occurs when a threat to self is recognized as real and the emotional response is suppressed, in order to manage the situation. Contrastingly, suffering is a very emotional state, where the person is filled with sadness. In this paper, this conceptualization of suffering will be retained as a basis for a meta-synthesis process, examining how children and adolescents with cancer experience suffering and endurance. METHOD Meta-synthesis is an essential method for accumulating knowledge from individual qualitative studies; the objective of meta-synthesis is not to aggregate results, but rather to interpret results and expand knowledge regarding a particular phenomenon8,,9 . In addition, metasynthesis profits from the various methodological and theoretical contexts particular to the studies included 10. Unlike critical reviews or integrative literature reviews written in narrative form, meta-synthesis allows for both interpretation and meaningful synthesis of the findings from individual research studies 10, 11. Paterson et al. (2001) guided the analysis of the data in which the member of the team analyzed each primary research report independently and then the team came together to compare similarities and differences in interpretation and to arrive at a consensual decision regarding interpretation of the research. Following Paterons method, primary research reports were selected from nursing/caring journals and allied health and social science literature published from January 1993 to January 2003, whose authors used a qualitative or combined qualitative/quantitative method. Research reports were identified by a search in computerized databases (CINAHL, MEDLINE, PSYCHINFO Via OVID). Seventeen primary research reports met the following inclusion criteria12-28: (a) participants were children and adolescents with cancer between the ages of 5-21 years old (in this paper children will refer to this age group), and (b) the researcher(s) investigated the experiences of living with cancer and focused on concepts that explicitly or implicitly included suffering and were included in the meta-synthesis. After individual review of each of the 17 reports by two team members (IE, PO) and then discussion by all of the team, five different concepts emerged in relation to the phenomenon of suffering: initial response, loss of body-loss of life, enduring, struggling for normalcy, and turning point.
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1)The initial response: The initial response is comprised of the child emotional responses to the following situations : s the initial cancer diagnosis, the beginning of treatment, the ending of treatment, and the recurrence of cancer. The keywords particular to describing children initial responses were: s uncertainty, shock, disbelief, feeling depressed, feeling aggressive, irritation, mood swings and thoughts of death and dying. Children often asked why questions. The dynamic of communication among children, parents and health care professionals affected how information was received in the initial stages. Hockenberry-Eaton (1994) reported that the initial diagnosis was sometimes given abruptly with no further explanation: my mom came home and said I had cancer and we had to go to the hospital that kind of scared me because I didn know what was going on(p.1027). t 2) Loss of body-loss of life: Cancer and its treatment were associate with children being weak, tired, and generally changed from their previous normal state. Furthermore, when the cancer affected the body, it also invaded other aspects of the child life, such as the child mental and physical abilities, s s as well as the child relationships with others and with self. As these were aspects of life s meaningful to the child, a body with cancer meant a body that was restricted and dependent. Not only was life, as previously known to the children lost in living with pain and cancer, but the children also faced thoughts of their possible death. Loss of mental capacity: Symptoms believed to be long term and associated with permanent damage or disability were often difficult to accept. One 11-year-old cancer survivor talked with regret and sadness about the effect that extensive treatments, namely cranial radiation treatment, had on her mental abilities. She blamed the treatment for her inability to do math in school14. Loss of parts of the body: Threats to the body included the physical loss of parts of the body. According to Weekes et al. (1993), the subjective experience of pain associated with needle insertion in treatment was exacerbated by the children concern regarding the removal of their bodily substances (i.e. s the removal of spinal fluid in a lumber puncture). In addition, some children had to undergo amputation of a limb. Loss of a body part may also relate to other losses that result in dependence on others, such as losing the ability to walk. Loss of relationships: The cancer treatments physically separated the children from their peers, as they were not able to attend school or be involved in usual activities: really longed to go back to school and I most of all to my friends 18(p. 1488). For the child, obvious changes in appearance due to treatment and disease were difficult to live with, especially for girls, I often think that because I do not have hair, boys will not take any interest in me (Enskar et al.,1997, p. 8). Loss of relationships also refers to the loss of the child relation to self. As one child said: s while I was on therapy my mom drove me crazy. She was always on my case about my treatments. If I tried to talk about something else, she got mad and said I was not paying attention to my condition. Now that my therapy is over, maybe we can talk about something else and she can pay attention to me 19, (p. 666). Loss of time: Waiting was a recurring experience throughout the course of the cancer. Adolescents had to wait for test results, for treatment to end, for the cancer to respond to treatment, and for doctors appointments. Waiting required that life be put on hold and that the child remain suspended in the present. Not only was time lost, but future life plans were affected by the loss of time as well.
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Loss of place of home: Children longed to be at home. However, having cancer treatments meant being alone, being left out, and being separated from people and things that they loved 12, 17, 25, 27. Having cancer in the hospital was experienced as isolating, restricting and long lasting, evident in one child s statement that the hour infusion was something I concentrated on and thought of as hard 24 since I was unable to get out of the room (13, p. 22). In addition, Hockenberry-Eaton (1998), suggests that the hospital environment may result in the child experiencing increased fatigue. Thus, not only are children separated from their own home, but they must reside in a new place that may often be disruptive to their rest. 3) Enduring: Enduring cancer meant suppressing one emotions, or mentally and emotionally s holding on . Children endured cancer in many ways, and how each child endured depended on their belief system. For example, some children believed that some pain was necessary in order to get better14. Enduring was a way to control emotions by suppressing them, and children experiencing extreme distress often entered a hibernating phase in an effort to minimize all interaction and activity 17 to get through the cancer and conserve energy. Examples of enduring behaviors included: wanting to sleep (some requested to be put to sleep before medical treatments), being passive, withdrawing, holding hands, watching television, and reading or being read to. Cultivating feelings of hope, thinking positively, or not thinking at all about living with cancer were also strategies that helped the child endure. Despite the difficult experiences of cancer for some children, long-term activities and future goals did not seem to be influenced by the cancer and cancer treatments 27. While bonding with persons who were honest and understanding helped the children to feel normal, encountering individuals who did not understand their feelings diminished the children abilities to endure their suffering s experiences: asked a nurse about pain she told me there was minimal pain. She should I have just told me she didn know. I was screaming for days (Kameny & Bearison, 2002, p. t 160). Morse (2001) identified three types of enduring: (1) Enduring to survive, which occurs during moments of physiological threats. In children, this type of enduring is seen during painful medical procedures. For example, Weeks et al. (1993) emphasized that holding hands was a strategy that helped the child to remain in control, to conserve energy; (2) Enduring to live, which enables the child to focus on getting through each moment, one at a time. For example, children found that keeping busy, thinking positively, or not thinking at all about cancer helped them to manage to survive one day at a time, and (3) Enduring to die, which occurs at the end of life. Experiences of extreme fatigue are related to this type of enduring. Here, enduring helps the child to remain focused on the present to bear the unbearable. The child conserves energy by limiting his/her contact with the surrounding world. 4)Struggling for normalcy: Struggling for normalcy refers to the children efforts to be a part of s normal life, as lived by their peers and as previously lived by themselves. Due to their altered reality, the children experienced uncertainty about what was normal and sought validation, as noted in the statement: I guess I normal. My mom says I a pest, so I guess that that pretty m m s 18 normal. ,(p.1488) Being healthy meant being normal again 22. However, due to the cancer, the children seemed to occupy a position of being the outside looking in when asked to consider the concept of on health. The child could recognize in others what constituted health; however, health was identified as something separate from the child - something seen in others but not in one self. s
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The children displayed the ability to accept what had changed in their lives and to find a new level of normalcy. The theme of getting used to it or not illustrates the struggles children experience during active treatment. According to Stewart (2003), children got used to the cancer during the treatment. Children and adolescents were seeing their everyday lives as routine and ordinary despite their cancer diagnosis and treatments. Weekes and Kagan (1994) noted that, with time, children moved toward a normal life. Conversely, Woodgate and Degner (2003) reported that getting used to cancer was unrealistic because the suffering was always present. A 16year-old boy explained: you do not really get used to cancer and its symptoms you adapt to it. And I do not think there any way that you can totally prepare because there are no actual s guarantees(p. 484). 5)Turning Point: A turning point occurs as the children, after diagnosis, face the demands of cancer and the consequences of the disease for their present life. In addition, the turning point also includes the child construction and assigning of meaning to the cancer experience. s The children appeared to realize at some point that they are not the same person after the experience of cancer as they were before diagnosis. However, when therapy ended they were expected to go back to their previous life, evidenced by the statement: they say, you don t 19 have cancer anymore, so, well do something with your life , p. 1486). Through assigning meaning to the experience, the theme of turning point also refers to a resulting changed identity: having cancer has made me not normal, but that good because it means I not s m boring like my friends. I different. I special. So I am holding on to cancer for dear life. I do m m not want it to go away I like being different19, p. 667). Children saw the end of treatment as an opportunity to improve themselves both physically and mentally. They described a desire to extend themselves to help others: having cancer has 19 helped me change my ways ,(p. 667). In general, there was a belief that the cancer had made them a better person: made me better and more loving and stuff I do not really it remember if I loved people before 16,(p.1029) Personal growth also included attaining a philosophical perspective and increased maturity during the illness experience 12, 13, 19, 21. Moving on and learning from the experiences of cancer represented a turning point: have I become more mature due to this some things they think are important but I think they are nothing 19, (p.667). Developing a positive attitude, becoming more spiritual, and putting the cancer experience into a larger life perspective also represented turning points for the children. Discussion Morse 6, 29, 30 two states of suffering oppose one another, each demanding that the individual s be treated in different ways. This meta-synthesis further reveals that although not always a linear progression, in general, the suffering experience traverses from the child initial s response to a changed reality (i.e why did I get the cancer? to the turning point, where ) some children actually say, am glad I got it During this process, the child faces personal I . challenges including the loss of body and life as it was once known and the struggle for normalcy. Children manage to bear such ordeal only through expressing their emotions, but also through enduring. Individuals who suffer emotionally recognize the meaning of what is lost (Morse 2001). Having cancer means being different from others and children struggle for normalcy despite the cancer. When children accept their losses, there is a movement to redefine the future. This transformation can be named the turning point, as a reformulated self (Morse, 2001) has evolved through the illness experience.
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Understanding the suffering experiences in children with cancer is an essential step for nurses and doctors to recognize and appropriately intervene when caring for these children. Future research could address the influence of culture on the experience of suffering, the use of techniques that could complement interviews (such as video, cameras, drawing or journaling), and thereby foster trust and assist the children to express their suffering experiences, as well as the endurance phase of the suffering experiences of children during cancer.

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