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지난호

제40권 제4호Vol.40, No.4

소아암 자녀를 둔 어머니의 외상 후 성장 경험

Posttraumatic Growth in Mothers of Children with Cancer in Korea: Growth of Contradictory Coexistence

Abstract

This study aims to investigate the experience of posttraumatic growth (PTG) in mothers of children with cancer. The participants were 13 mothers of children under age 18 who had been diagnosed with cancer and whose treatment was complete. In-depth interviews were conducted and analyzed using grounded theory. The major finding was that PTG constituted finding meaning and reconstructing the worldview by means of rumination between contradictory domains: withdrawal and advancing. Withdrawal domains include intrusion by distressing thoughts and feeling isolated, and advancing domains refer to discovering gratitude in life, family togetherness, increased empathy, and spiritual change. The findings suggest that the PTG may be summarized by Lao-tzu’s aphorism: “A person who is advancing in Tao may appear to withdraw”. Given the characteristics of PTG, which may be the harmonious coexistence of contradictions, psychosocial services should be provided for all family members of children with cancer.

keyword
Childhood CancerPosttraumatic GrowthMothersLao-Tzu

초록

삶을 뒤흔드는 사건인 소아암 진단과 치료는 당사자뿐만 아니라 어머니에게도 심각한 외상 사건이다. 본 연구는 소아암 자녀를 둔 어머니의 외상 후 성장이 어떻게 경험되는 지 탐색하는 것을 목적으로 한다. 이를 위해 소아암 자녀를 둔 어머니 13명을 대상으로 심층면접을 진행하였고, Glaser의 근거이론을 사용하여 자료를 분석하였다. 분석 결과, 외상 후 성장은 자녀의 소아암 치료가 종료된 뒤 트로피처럼 부산물로 획득되는 것이 아니라, 밝음과 어두움 사이에서 끊임없이 의미를 발견하고 세계관을 재구성하는 일련의 과정이며, 이는 노자의 도덕경에서 말하는 “명도약매 진도약퇴(明道若昧 進道若退)”와 같이 대비적 속성의 공존으로 이해할 수 있음을 제시하였다. 긍정적 요소(明)로는 ① 감사의 발견, ② 끈끈해진 가족, ③ 공감의 확장, ④ 영적 변화가 있었으며, 부정적 요소(昧)로는 ① 끊임없는 고통, ② 고립의 경험 등이 있었다. 이러한 발견을 토대로 소아암 어머니의 외상 후 성장 개념에 대해 논의하였다.

주요 용어
소아암외상 후 성장근거이론노자

Ⅰ. Introduction

Life-threatening illnesses such as childhood cancer are challenging, not only for children but also for their parents. Traumatic events such as children’s cancer can have negative impacts on parents, because adversities in life can lead to negative psychological outcomes, such as posttraumatic stress disorder (PTSD) or symptoms (PTSS) (Jim & Jacocbsen, 2008). However, the impact of childhood cancer may induce growth in parents, which is termed posttraumatic growth (PTG) (Calhoun & Tedeschi, 2006; Picoraro, Womer, Kazak & Feudtner, 2014; Tedeschi & Calhoun, 2004). Recently, studies have emerged on the association between children’s cancer and their parents’ PTG, and the emerging findings are that PTG is associated with a higher quality of life and buffers the negative impacts of traumatic experiences (Barakat, Alderfer, & Kazak, 2006; Kleim & Ehlers, 2009). In this vein, PTG may be understood as a prize, an acquired positive outcome of an individual who has survived cancer.

However, it remains unclear whether PTG is a discontinuous positive outcome or chaotic process (Hager, 1992; Hayes et al., 2007; Maercker & Zoellner, 2004). If PTG is considered to be only an outcome drawn from the reinterpretation of traumas, it can be regarded as a prize acquired from the trauma experience. In many studies, PTG has proved to affect as a moderate between cancer patients’ stress and quality of life and is closely related to the high level of hopefulness, life satisfaction, and self-efficacy and low level of chronic anxiety(Kim & Chang, 2019; Lee, 2012; Nakayama et al., Song & Lee, 2010). However, PTG not only signifies a positive change outcome after the traumatic experience, but also is a dynamic process that is incrementally acquired by the expansion of an individual’s worldview after adversity and constant cognitive rumination on past suffering, which may have seemed chaotic (Hayes et al., 2007; Tedeschi & Calhoun, 2004). Therefore, PTG may appear to have positive aspects, but on the other hand, it can also be distressing. PTG may appear to not improve the quality of life, because it contains distressing intrusion, which is also a part of PTSD. Several studies have reported positive correlations between PTG and depression (Helgeson, Lepore, & Eton, 2006; Morrill et al., 2008; Park et al., 2010; Seitz et al., 2011). In addition, there are studies indicating that the relationship between PTG and PTSS is not significantly negative (Koutrouli, Anagnostopoulos, & Potamianos, 2012; Morrill et al., 2008), and is in fact positive (Barakat et al., 2006).

It might be counterintuitive that the PTG has a Janus face, the Roman God with two faces looking in opposite directions (Maercker & Zoellner, 2004). The Janus-face model of PTG explains that the PTG may be related to self-transcending aspects as well as to self-deceptive or dysfunctional ones (Maercker & Zoellner, 2004). However, the negative aspects may lead not only to maladjustment. Maercker and Zoellner (2004) depict a man whose wife was murdered and who felt himself to become stronger; on the other hand, he was still distressed by self-deceptive beliefs, such as that material things are worthless. Subsequent longitudinal studies have confirmed the coexistence of Janusian faces of PTGs. Cognitive Behavioral Therapy (CBT) was highly effective in decreasing PTSD in motor-vehicle accident survivors, but only partially effective in increasing PTG (Zoellner, Rabe, Maercker, 2011). The result cautioned against a naive expectation that general PTG could be achieved when the negative impact such as PTSD, was successfully decreased. In addition, studies of survivors of Israeli ex-prisoners of Yom Kippur War (Dekel, Ein-Dor, & Solomon, 2012) suggest that PTG may be achieved through post-traumatic emotional struggle, when an individual could use self-deceptive strategies. A study of youth survivors of China’s 2008 Wenchuan earthquake (Zhou, Wu, & Chen, 2015) found that PTSD and PTG coexist in surviving adolescents. These results can be applied to other adolescents for whom the PTSD situation is similar. Therefore, PTG and emotional distress, even PTSD, can possibly coexist (Tedeschi & Calhoun, 2004).

Taking into account the contradictory properties inherent in the PTG which is also suggested by the Janus-face model of PTG (Maercker & Zoellner, 2004), the paradoxical change after the traumatic experience suggests a conceptual connection with the Tao which suggested in the Tao Te Ching by the ancient Chinese philosopher Lao-tzu. In recent studies on traumatic stress focus on Taoism to understand the process of rumination of traumatic experiences (Jarrett, 2013; Linley et al., 2006; Yip, 2008). Yip (2008) illustrates PTG experiences of 911 terror survivors through aphorism of Lao-tzu. Linley et al. (2006) also suggested the relations between positive psychology traditions and classic philosophy including Lao-tzu philosophy. Lao-tzu was an ancient Chinese philosopher about 2,500 years ago, and he stated that the problem of Chinese civilization, which was confused by the war, was escaping from nature. The Tao Te Ching, the essence of Lao-tzu philosophy, explains the appearance of nature is a harmonious coexistence of contradictions. The Tao Te Ching of Lao-tzu suggests that the two contradictory antagonisms – brightness and darkness, advancing and withdraw, and great and deficient – can coexist harmoniously (Choi et al., 2014). Jung (1953/2014) also commented on the coexistence of light and a shadow in mind. Because the shadow is a part of the mind that needs to be assimilated into consciousness, individuals cannot remove the shadow with their own will (Rhi, 2012). Therefore, psychosocial services for those facing adversities should aim not only to alleviate pain but also to find the meaning of suffering (Rhi, 2012), and this is also true for PTG in parents of children with cancer.

The cognitive-processing model of PTG can explain the Janus face of PTG, because the intrusive thinking, which is regarded as a symptom of PTSD, can also be associated with PTG (Calhoun & Tedeschi, 2006; Jim & Jacobsen, 2008; Stockton, Hunt, & Joseph, 2011; Watkins, 2008). Distressing intrusive thinking following the traumatic event is regarded as a pathological symptom. Intrusion is an unintentional recollection, such as having a nightmare about children’s cancer (Morris & Shakespeare-Finch, 2011; Taku, Cann, Tedeschi, & Calhoun, 2009), and it is regarded as a failure to reconcile traumatic events with the parents’ preexisting cognitive schemas (Baum, Cohen & Hall, 1993). Traumatic events such as children’s cancer shatter parents’ preexisting cognitive schemas, which may induce PTSD. However, they try to construct new assumptive worlds by a method termed rumination, the cognitive reinterpreting procedures (Picoraro et al., 2014; Zoellner & Maercker, 2006) which might be both distressing and intrusive (Morris & Shakespeare-Finch, 2011; Taku, Cann, Tedeschi, & Calhoun, 2009). Intrusive thinking is distressing, because it is perceived only when it is derived from consciousness, even when it is unintentional. However, if an individual can accept it to a certain degree, then the intrusive thinking is more likely to induce positive rather than negative reinterpretation, which can serve as a catalyst to induce PTG (Devine et al., 2010; Picoraro et al., 2014; Park, Chmielewski, & Blank, 2010).

Given the characteristics of PTG, understanding how it manifests may be vital to psychosocial professionals in pediatric oncology as primary psychosocial service providers. However, there has been less attention paid to the contradictory faces of PTG in caregivers of childhood cancer in Korea. Cancer affects all family members, but considering the developmental stages, childhood cancer has a critical impact on parents who care for their children (Stam et al., 2006). Though the survival rate of childhood cancer in Korea has rapidly increased during the past two decades, from 55.8% to 84.1% (Korea Central Cancer Registry, 2019), psychosocial aspects, including PTG of caregivers, has not been discussed. Moreover, several studies on PTG in mothers of children with cancer have been conducted in Korea, but they have focused only on the determinants of PTG, such as hope and seeking for meaning, and have assumed that PTG has only a positive outcome (Jeon & Kim, 2016; Song & Lee, 2010). Previous studies of PTG in caregivers of children with cancer focused only on the positive aspects, assuming that the PTG is an acquired positive outcome associated with a higher quality of life (Morrill et al., 2008; Park, Chmielewski, & Blank, 2010), and inadequate attention has been paid to its contradictory properties. Therefore, the aim of this qualitative study on PTG experienced by parents of children with cancer in Korea is to address these research gaps. The research question is, “How do parents of children with cancer experience PTG?”

Ⅱ. Methods

1. Participants

The criteria for participating in the study were to be the mothers of children with cancer whose treatment had been completed at the time of the interview, because we felt that the eligible participants would be able to recall all treatment procedures and make rich statements in the interview. Only mothers were included as participants, because child care is primarily the responsibility of mothers in Korea, which is one of the highest-ranked countries in the gender gap for unpaid work, such as child care, among the OECD countries (2017). Thirteen mothers of children with cancer were recruited as study participants. The participants’ mean age was 42.77 years (SD = 5.73), ranging from 38 to 53; more than half of the participants’ children (69.2%) were male. The mean age of the children at the interview was 12.92 (SD = 5.04), ranging from 5 to 21. In religion, 69.2% (n = 9) of the participants were Protestants, 21.4% (n = 3) were Roman Catholics, and only one participant (7.7%) did not have a formal religion. In residence, 69.2% (n = 9) of the participants lived in metropolitan areas, 23.1% (n = 3) lived in a mid-size city, and one (7.7%) lived in a rural area. By cancer type, 61.5% (n = 8) of the children had leukemia, including acute lymphoblastic leukemia and acute myeloid leukemia, 23.1% (n = 3) had non-Hodgkin’s lymphoma, and 15.4% (n = 2) had other cancers, such as medulloblastoma and rhabdomyosarcoma. The children’s mean age at diagnosis was 5.07 (SD = 3.73), and their mean years of survival after cancer treatment was 4.31 (SD = 3.75).

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Table 1.
Demographic characteristics of participants
Pseudonym Age Gender of Child Age of Child at Interview Religion Residence Socioeconomic status** Cancer type Age at Diagnosis Survival Period after Treatment in Years
Sumi 53 Male 21 Protestantism Metropolitan Middle ALL 9 5
Soyoung 52 Male 20 Protestantism Metropolitan Middle NHL 12 5
Jinhee 41 Female 10 Protestantism Metropolitan Middle NHL 0 9
Jisu 44 Male 15 Protestantism Rural area Low ALL 1 6
Yunhee 39 Male 11 Roman Catholic Mid-size city Middle ALL 5 3
Miji 47 Female 18 Protestantism Metropolitan Middle ALL 5 11
Kyunghee 44 Male 13 Protestantism Mid-size city Middle MB 2 3
Hyewon 46 Male 16 No formal religion Mid-size city Middle RS 4 10
Seunghee 38 Female 5 Protestantism Metropolitan Middle ALL 2 1
Misun 33 Female 5 Protestantism Metropolitan Middle ALL 2 1
Sunjung 39 Male 10 Protestantism Metropolitan Middle AML 9 1
Semyung 42 Male 13 Roman Catholic Metropolitan Middle AML 9 1
Hyunju 38 Male 11 Roman Catholic Metropolitan Middle ALL 6 0

* ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia; MB, Medulloblastoma; RS, Rhabdomyosarcoma; NHL, non-Hodgkin’s lymphoma

** Low socioeconomic status: Under minimum cost of living

2. Interview Procedures

In order to recruit eligible study participants, the recruiting announcement was posted on the Internet websites of a nationwide childhood cancer organization and self-help group in November 2013. It was difficult to recruit study participants, because of the negative stigma attached to childhood cancer in Korea (Kim & Yi, 2012). Therefore, we used snowball sampling, a method of finding other potentially eligible participants by their contacts with the mothers who had voluntarily decided to participate after reading the study participation announcement. The recruiting was stopped when the data were considered to be saturated (Strauss & Corbin, 1998). The interviews were conducted between November 2013 and May 2014 by interviewers trained in qualitative research. Face-to-face interviews were mainly conducted, but telephone interviews were also done if the participants preferred or lived far away. Prior to the interviews, informed written consent was obtained. The interviews were audio recorded, and the beginning and end of the recordings was clearly announced. Interviews started with asking about the participants’ personal information and their children’s illness. Semi-structured questions were asked in Korean: “What changes did you experience during the course of the childhood cancer treatment?” and “What do such changes mean?” The interviews took about 60 minutes, and never exceeded two hours, in order to prevent participants’ fatigue. The research participants received a gift voucher worth $20 for their participation. Institutional review-board approval of the ethical guidelines of this study was obtained in October 2013 (201310-SB-126-03).

3. Data Analysis

Grounded theory, as proposed by Glaser and Strauss (1967), was used with the aid of qualitative data analysis software (ATLAS.ti; Muhr, 2009) in order to understand how the PTG was experienced by the study participants. Two investigators read all transcripts and summarized them independently. Analysis by means of grounded theory consists of two steps. First, for substantive coding, the text segments considered to be related to the PTG were coded and discussed until all investigators agreed with the drawn codes (Glaser, 1992). In the first step, 317 codes, 57 clusters of codes, and 11 topics were drawn. Second, for selective coding, the relations of all codes drawn in the first step were grouped into code clusters. In the second step, 11 topics were merged into 9, and the theoretical model was drawn1). A model to explain the PTG emerged from repeated comparisons and contrasts between all code clusters carried out by all investigators independently (Glaser, 1992). Next, each investigator engaged in debrief sessions with peers who have expertise in the psychosocial aspects of pediatric oncology in order to improve the credibility of the research findings (Lincoln and Guba, 1985). Finally, quotations that reflect the themes properly were translated into English by a bilingual and bicultural expert. In order to protect their anonymity, pseudonyms were used for all study participants.

Ⅲ. Results

As Figure 1 displays, the participants’ PTG experiences entailed reconstructing their worldviews by ruminating on their cancer experiences, as a way to make sense of and reconcile their traumatic experience with their individual core beliefs. PTG may be generated by continuous circulation between positive and negative domains. Participants reported that they discovered gratitude in life, family togetherness, increased empathy, and spiritual change, but there were painful experiences at the same time. They also reported the experiences of feeling isolated and having distressful, intrusive thoughts.

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Figure 1.

Conceptual model of PTG in mothers of children with cancer

hswr-40-4-332-f001.tif

1. Finding meaning and reconstructing the worldview by means of rumination

Consistent with previous studies, rumination, a reflective thinking on past experience, may be a requirement for PTG (Tedeschi and Calhoun, 1996; Tedeschi and Calhoun, 2004). Participants reported that they tried to understand why the unpredictable cancer had struck their children. They struggled to reconcile their cancer experiences with their core beliefs about the world. One participant, Kyunghee, reported that she painfully continues to think about what the cancer experiences meant to her from the time of onset to after treatment. Although cancer experience is a tragedy, it becomes an opportunity to find meaning and reconstruct the worldview (Nolen-Hoeksema and Davis, 2004):

I think about it carefully all the time··· It would have been better if my son had not gotten cancer, but we couldn’t avoid the cancer, so we should just accept it··· and we always ask ourselves what it means. What does it mean to me? What does it to our family? (Kyunghee)

2. Discovering gratitude in life

Generally, gratitude is felt when one receives something precious, but participants said that they found gratitude for being alive when they realized “the frailty of life” because of the cancer experiences. They reported that they had found a new meaning of gratitude that might seem rather paradoxical:

After my child got sick, I realized the vanity of human life··· But I came to be grateful when I saw my daughter sleeping. I was filled with gratitude when the greed in my heart disappeared. My heart got stronger and no longer hurt, I think. (Misun)

Participants reported that their worldviews had been changed by their experiences with their children’s cancer. They realized that the important things in life are invisible because of experiencing their children’s suffering and the bereavement of other children:

Everyone is equal ··· Well, everyone is equal in front of death. I think so··· What can I do? I can only live day by day. It is better to be happy right now than to invest for the future. (Jinhee)

Jisu stated that her son was delayed in developing reproductive organs as an aftereffect of the cancer treatment. Jisu had to work and bring up her two children alone after divorcing her husband, so she had not known that her son had attempted suicide after being teased by his peers because his reproductive organ was small. Therefore, she decided to quit her job and move to the countryside, living with low income. However, she perceived her socioeconomic status as a lower class in contrast to other interview participants; she stated that she also discovered gratitude in life:

After I divorced my husband, I think I lived as a slave of money. It was really important for me to make money before. . . . I decided to move to here [rural area]. I lost many things in life. I lost money. Of course, my child is not studying well. I don’t have enough money. But now I really appreciate my life. Every hour with my son is really precious for me. (Jisu)

3. Family togetherness

Participants stated that their family members had become closer and more intimate through the journey of cancer. Not only did the family become more cohesive because of their cancer experience, but the increased cohesion among family members helped them to overcome adversities. A 53-year-old mother, Sumi, stated that she had to sell her house because of the cost of treatment and move to a smaller house, but that her family became closer:

Working was more important than family for us, so we did not have much time to be so close. But after my child got sick, ··· our families got together. ··· Suffering made our family stronger and closer. I think it’s a great change for us. (Sumi)

4. Increased empathy

The participants reported that they became more empathetic to the suffering of others. Increased empathy was associated with the increase in helping others. For example, Jisu reported that she voluntarily began to post short essays on the Internet to encourage people with cancer. Soyoung also became more empathetic after her child’s cancer experience:

Before my child got sick, I think I was a little bit selfish. I think I just got on my high horse. Now, I can’t turn my face away from people who are sick, people with no money or refugees…… when I see them, I feel like I should do something. (Soyoung)

Participants also stated that they became aware of social problems. They understood that the social isolation of people with cancer was due not to their low psychosocial functioning but to social barriers that blocked them. They stated that they could understand the difficulties faced by childhood cancer survivors as social problems to fight against, not as an individual’s tragedy to be sympathized with. Furthermore, the mothers recognized that they needed to be in solidarity with other underprivileged people:

Actually, I thought about what and how to help people in agony. But now I’ve found that it can’t be fixed by just helping them. It’s a human rights issue... and I realized it was a social problem. (Jinhee)

5. Spiritual changes

All participants reported that they experienced spiritual changes, including one participant with no formal religion, because of their children’s cancer. They reported that spiritual changes reduced the anxiety that was caused by the uncertainty in treatment sequelae:

One day, my husband and I realized that God is a healer, not a punisher. God never gave my child cancer to punish us. I realized that my child’s cancer was not caused by our family’s sins. With that belief, I became convinced my child will be cured. (Kyunghee)

6. Intrusion by distressing thoughts

Most participants stated that, even though the cancer treatment had finished, the suffering continued indefinitely. Jisu stated that her son continued to be on treatment for short stature and liver cirrhosis because of the aftereffects of the cancer; she also had had psychiatric treatment for depression and took medication. Soyoung said that she wanted to erase the cancer experience from her memory if possible. A 41-year-old mother, Jinhee, also stated that she always felt distressed when she looked back on the experience of cancer even after her daughter’s treatment was completed. She stated:

When I walk, it comes to my mind suddenly. The memory hits my head again when a child with cancer comes on TV. It is really painful … it is really painful ... I try to forget it, but it always flashes back … and then I try to think positively ... It goes round and round ... Fear does not disappear. (Jinhee)

7. Feeling isolated

The study participants reported that they felt isolated from society because of the stigma attached to childhood cancer. In previous studies, the diagnosis and treatment of cancer of children cause continuous guilt and sorrow in mothers, and the guilty and sorrow feeling are considered as risks of the well-being of children with cancer (Jeong, Heo, & Hyun, 2017; Nikfarid et al., 2017). There is no research on the social isolation of mothers of children with cancer from a gender perspective. However, a qualitative study on mothering experiences of children with cancer conducted in the UK reported that they experienced new role responsibilities and expectations including an obligation of proximity (Reay et al., 1998; Young et al., 2002). The feminist theory explains why mothers try to identify their motherhood through socially gendered roles when their children have disabilities or life-threatening illnesses (Richardson, 1993). A 39-year-old mother, Yunhee is suspected of continuing to fulfill her mothering role even after her child’s cancer treatment is finished. She stated that when she was taking her six-year-old son to the hospital, she always went at dawn, when others could not see her son. The participants noted that the feeling of being isolated had persisted even after treatment was finished:

When I go out into the world, people know me. When I meet people, I do not want them to repeat the same thing, “Sorry, my son is sick, sorry,” like a parrot. They say, “What a pity… How’s your son doing? “… I hear it repeatedly. So it is hard to hang out with my son. It really hurts. (Yunhee)

Ⅳ. Discussion

The PTG experiences in mothers of children with cancer can be summarized by Lao-tzu’s aphorism: “A person who is advancing in Tao may appear to withdraw” (Chapter 41). PTG in mothers of children with cancer may be not only a positive outcome of adversities in life, but also a dialectical and dynamic process between distressing intrusion and being isolated even after treatment—withdrawal—and positive experiences, such as discovering gratitude, family togetherness, increased empathy, and spiritual change— advancing. These results are in line with previous study findings that PTG is not a positive outcome but a chaotic and dynamic process (Hager, 1992; Hayes et al., 2007). However, only positive changes after adversity tend to be emphasized in the PTG discourses. Tedeschi and Calhoun (2004), who initiated the concept of PTG, also said that PTG has contradictory aspects. The participants in this study were still struggling with painful memories, even though their children’s treatment had ended, and they were experiencing social isolation; however, the suffering did not lead only to negative psychological outcomes. The mothers in this study were constantly asking themselves what the essential meaning in their suffering had been, and they all both intentionally and unintentionally ruminated on their lives. In other words, PTG, as Lao-tzu described, can be seen as being constantly reconstructed in a dialectical process between contradictory domains rather than as positive outcomes that are disconnected from past adversities. For instance, PTSS may appear to be related to PTG, and PTG may be regarded as a by-product of PTSS (Milam, 2004; Milam, Ritt-Olson, & Unger, 2004). In this study, the distressing intrusion may be not distinguished from the PTG but a part of it.

The parents in this study reflected on what their adversities meant in their lives within the coexistence of contradictions. After these adversities, the mothers became more likely to reinterpret their everyday lives as meaningful, whereas they had considered them trivial before the cancer experiences. They reported that they could find meaning in life after they stopped pursuing success and experienced their children’s cancer. Frankl (1969/2014) argued that pursuing meaning, not happiness or pleasure, should be the aim of life, because people will distance themselves from happiness if they pursue it. In previous studies, researchers suggested that finding meaning in life can minimize or detoxify the negative effects of traumatic events (Duran, 2013; Park et al., 2010).

Discovering gratitude in life played an important role in their PTG experiences, as in previous studies (Duran, 2013; Lechner et al., 2003; Tedeschi & Calhoun, 2004). In addition, discovering gratitude in life was associated with expanding empathy for others. Fitzgerald (1998) summarized the concept of gratitude in three domains: a warm heart from discovering the value of certain persons or things, goodwill toward the persons or things, and a disposition to act from appreciation of the goodwill. The parents of childhood cancer survivors were not only grateful that their children had overcome the cancer, but also willing to express their warm sense of appreciation to other people with predicaments. This increased compassion, empathy, and sensitivity toward others were regarded as important domains of PTG (Collins, Taylor, & Skokan, 1990; Duran, 2013). The spillover of empathy into others was not a response to any compensation, but rather a response to the fullness of and gratitude for life itself. Increased empathy led to social actions aiming to abolish the social barriers imposed on childhood cancer survivors and did not stay only at the emotional level.

PTG may include collective experiences by the family, not only the individual’s inner cognitive changes, and family togetherness was one of the domains of PTG in this study. Several studies that approached PTG at the individual level explained PTG experiences by using the stress-coping theory, which is based on behavioral psychology and focuses on how solitary individuals perceive and appraise unpleasant stimuli cognitively (Lazarus, Deese, & Osler, 1952; Lazarus & Folkman, 1984; Jim & Jacobsen, 2008). However, coping with childhood cancer inevitably involves all family members (Stam et al., 2006), and the reinterpretation of the distressing experience is likely to occur collectively (Berg et al., 1998). Specifically, parents who care for their children with cancer are commonly affected by distressing incidents, and they make collective efforts with their families to overcome them (Berg et al., 1998). Lee et al. (2004) uncovered the paradoxical growth in families whose children had a chronic illness, including childhood cancer, in Korea. Duran (2013) also suggested family closeness and togetherness as important domains of the PTG experienced by childhood cancer sufferers and their families.

Because childhood cancer is an unacceptable, incomprehensible, and seismic event, parents have no choice but to explore the cause of the illness. However, since the causes of childhood cancer cannot be specified, self-attribution or self-blaming, which can cause negative psychological outcomes, is reported to be common in parents of children with cancer (Ow, 2003; Tangney, Wagner, & Gramzow, 1992). Considering this, some researchers have found that reliance on religion or deepened spirituality rather than self-attribution helped to buffer the negative impact of seismic events (Hensler et al., 2013; Park et al., 2010; Tedeschi & Calhoun, 2004). In this study, spiritual change was also an important domain of PTG, as was found by previous studies (Hensler et al., 2013; Park et al., 2010; Picoraro et al., 2014; Tedeschi & Calhoun, 2004).

In psychosocial service settings, PTG has been regarded as improving the quality of life and buffering against negative psychological outcomes. In contrast to previous studies on PTG, we found that PTG may be neither eudemonic nor distressing, but may instead be an experience of the coexistence of contradictory aspects, as Lao-tzu suggested. Jung (1953/2014) has also commented on the coexistence of contradictions—light and shadow—in the mind. Because the shadow is a part of the mind that needs to be assimilated into consciousness, psychosocial interventions such as psychotherapy cannot remove the shadow (Rhi, 2012). Understanding PTG experienced by parents of children with cancer may change the paradigm of psychosocial services in pediatric oncology which has been focused on psychosocial maladjustment and psychopathologies (Park, M., 2007; Park, S., 2011). Psychosocial service providers in pediatric oncology need to understand that parents are struggling to discover the meanings of suffering and reconstruct narratives of life as well as experiencing psychosocial maladjustment because of their children’s cancer experiences. Considering that the contradictory dimensions of PTG coexist, the PTG of parents of children with cancer should not be understood as a prize to be acquired only after cancer treatment. Regardless of whether PTG promotes the quality of life, it may be necessary to develop services for parents caring for children with cancer, considering that PTG experiences may be a component in enriching life, even though they can be painful. While a lot of studies conducted in Korea identified PTG as acquired outcomes, this study suggests that PTG coexists with contradictory factors through continuous rumination on traumatic events. This means that PTG is not acquired after the end of all situations, but is itself a process of change. Parents experiencing PTG may also have maladaptation due to past traumatic events, and on the contrary, maladjusted parents may also experience PTG. Psychosocial service providers in the field of childhood cancer need to understand that parents' contradictory experiences may coexist. This study may serve as a valid benchmark to develop services to improve PTG. For instance, pediatric oncology psychosocial interventions to support the rumination on the childhood cancer experiences may promote PTG.

This study has several limitations. The PTG experiences of fathers were not included in this study. Whereas the high concentration of child care among mothers in Korea was considered, fathers should be included in future research. In addition, only the parents of children who had completed cancer treatment were eligible to participate in this study; the absence of parents whose children were undergoing treatment during the study period could be another limitation. Considering that PTG is a process that begins with the initial stage of cancer diagnosis. Lastly, socioeconomic status was not taken into account sufficiently in this study, whereas higher income is closely related to the high level of PTG (Cordova et al., 2001). Future studies need to include cancer trajectories, developmental needs of children, as well as socioeconomic status.

Notes

1)

The 11 topics initially drawn were as follows: Finding meaning and reconstructing worldview, discovering gratitude in life, family togetherness, spiritual change, increased empathy, intrusion by distressing thinking, feeling isolated, recognizing the difficulties of childhood cancer survivors as a social problem, and social participation.

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Acknowledgement

This study was recomposed by using a part of Kwonho Choi’s doctoral dissertation. This study was presented at the 19th International Psycho-Oncology Society Conference in Berlin, Germany in 2017 and at the 2018 Spring Conference of the Korean Association of Spirituality, Health and Welfare in Seoul, South Korea. We acknowledge the financial support of Korean Association of Leukemia and Childhood Cancer. This study was approved by the institutional review board of Yonsei University (201310-SB-126-03).


투고일Submission Date
2020-07-30
수정일Revised Date
2020-11-01
게재확정일Accepted Date
2020-11-04

Health and
Social Welfare Review