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The death of patients with terminal cancer: the distress experienced by their children and medical professionals who provide the children with support care
  1. Hiroyuki Otani1,
  2. Miwa Ozawa2,
  3. Tatsuya Morita3,
  4. Ayako Kawami4,
  5. Sahana Sharma4,
  6. Keiko Shiraishi4 and
  7. Akira Oshima4
  1. 1 Department of Palliative Care Team, and Palliative and Supportive Care, National Kyushu Cancer Center, Fukuoka, Japan
  2. 2 Department of Pediatrics, St. Luke's International Hospital, Tokyo, Japan
  3. 3 Department of Palliative and Supportive Care, Palliative Care Team, and Seirei Hospice, Seirei Mikatahara General Hospital, Shizuoka, Japan
  4. 4 Department of Palliative Care Team and Psycho-Oncology, National Kyushu Cancer Center, Fukuoka, Japan
  1. Correspondence to Dr Hiroyuki Otani, Department of Palliative Care Team, and Palliative and Supportive Care, National Kyushu Cancer Center, 3-1-1 Notame, Minami-ku, Fukuoka 811-1395, Japan; cas60020{at}pop21.odn.ne.jp

Abstract

Background Few studies have been conducted on the experiences of children of terminally ill patients or hospital-based medical professionals supporting such children.

Aim This study explored distress among individuals whose parents died of cancer in childhood and among hospital-based medical professionals supporting such children.

Design A qualitative study.

Setting/participants The sample was 12 adults whose parents had died of cancer in childhood and 20 hospital-based medical professionals supporting children of patients’ with terminal cancer. In-depth interviews were conducted, focusing on the distress experienced by the participants. The data were analysed thematically.

Results Among adults whose parents died of cancer in childhood, we identified themes related to the period before death (eg, concealing the parent's illness), the time of death (eg, alienation due to isolation from the parent), soon after death (eg, fear and shock evoked by the bizarre circumstances, regrets regarding the relationship with the deceased parent before death), several years thereafter (ie, distinctive reflection during adolescence, prompted by the parent's absence) and the present time (ie, unresolved feelings regarding losing the parent). We identified seven themes among the medical professionals (eg, lack of knowledge/experience with children, the family's attempts to shield the child from the reality of death, estrangement from the family once they leave the hospital).

Conclusions An important finding of the study is that the participants’ grief reaction to their parents’ deaths during childhood was prolonged. Moreover, hospital medical professionals may find it difficult to directly support affected children. Comprehensive support involving organisations (eg, local communities) may be necessary for children who have lost a parent.

  • Terminal care
  • Bereavement

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Introduction

The death of a parent is a very stressful event for any child. Owing to its severe psychological effects, effective interventions aimed at alleviating the child's suffering are required.1–4 Although several studies have focused on the experiences of family caregivers of terminally ill patients or interventions targeting this group,5–7 few have been conducted on the experiences of children of terminally ill patients or the medical professionals supporting such children.8 ,9 This study focused on support care for children of patients with terminal cancer, specifically exploring distress among those whose parents died of cancer during childhood and among hospital-based medical professionals who support such children.

Subjects and methods

Methods

This qualitative study explored the distress experienced by individuals whose parents died of cancer when they were of school-going age and hospital-based medical professionals who provide support care to similar children. The Institutional Review Board at National Kyushu Cancer Center, Fukuoka, approved the study.

Subjects

In total, 20 hospital-based medical professionals and 14 parentally bereaved individuals were recruited through snowball sampling either directly or by e-mail. Two bereaved individuals invited to participate in the study declined to do so due to emotional difficulties relating their personal experiences. The participants were told the aim of the study; each gave written informed consent to participate. Participating hospital-based medical professionals were physicians or nurses currently providing support care to school-age children (elementary to high school students) of patients with terminal cancer, aged 7–18 years. Participating bereaved individuals lost a parent to cancer while in elementary, junior high, or high school. Each bereaved individual was at least 20 years old at the time of the interview and capable of verbal communication. After initially interviewing 15 hospital-based medical professionals and 10 bereaved individuals, the data from both groups were deemed saturated, as no new topics were identified. However, while seeking potentially deviant observations, we interviewed five more hospital medical professionals and two more bereaved individuals. In total, 20 hospital medical professionals and 12 parentally bereaved individuals participated in this study.

Interviews and analyses

One trained paediatrician, one psychologist, and one palliative care specialist involved in the psychological support of children in their daily clinical practice (MO: female, a paediatrician, KS: female, a psychologist, HO: male, a palliative care specialist) conducted the interviews. Although the interviewers were professionally acquainted with some of the participating hospital-based medical professionals, they had no prior personal relationships with the participating bereaved individuals. Semistructured, face-to-face, individual interviews were conducted through an interview guide in a private room near each participant's residence between August 2012 and December 2013. The mean duration of interviews with hospital-based medical professionals and bereaved individuals was 22 and 33 min, respectively. The interview questions concerned support care for children of patients with terminal cancer, focusing on the distress of both the bereaved individuals and the hospital-based medical professionals supporting such children. All interviews were audiotaped, transcribed verbatim and thematically analysed in the grounded theory tradition.10–12 Field note documents were not analysed and transcribed interviews were not returned to the participants for comments.

First, two additional psychologists (AK and SS) used a constant comparison method to independently code interviews for identification of major themes. For coding, a coding notebook was created from the responses of the initial 15 hospital-based medical professionals and 10 bereaved individuals; subsequent interviews were coded with adjustments and modifications. Coding frameworks and assignments were thereafter discussed under the supervision of an experienced palliative care specialist (HO). The researchers reached consensus about the resulting codes and themes. We did not calculate inter-reliability statistics, and no software was used. We identified seven themes by the hospital-based medical professionals and 15 by the bereaved individuals according to chronological period.

Results

The patients’ demographic characteristics are presented in table 1.

Table 1

Participant characteristics

The distress of bereaved individuals was organised chronologically and consisted of two themes related to the period before the parent's death, six themes related to the time of death, five themes related to the period immediately after death, one theme related to several years after death and one related to the present time. Additionally, the data obtained from the medical professionals were categorised into seven themes.

Distress among children whose parents died of cancer

Time before death

The burden of concealing the parent's illness from others. Two participants felt burdened by keeping a parent's illness or hospitalisation a secret from other people in their lives.I could say all kinds of things in class before, but I had to conceal my father's sickness and hospitalization to myself until the very end. I could not confide in anyone. I remember that was really difficult. (then a high school student)

Balance between the parent's illness and the child's own life (eg, club activities and studying). Two participants reported difficulties with spending time with their parents due to their busy daily schedules.I heard my mother was not feeling well, and I was devoted to club activities back then. I guess I was too busy to make room for anything else. I was also busy with cram school (ie, extracurricular study activities that a student engages in to improve grades). (then a junior high school student).

At the time of death

Feeling of alienation caused by isolation from the parent. Seven participants were kept from visiting their parents at the hospital, removed from the hospital room at the time of death or were never told about the parent's illness.I had this lingering feeling of being left out. They assumed that older kids would understand, but the youngest one, me, could not. I think the feeling of being left outside the circle remained for a long time. (then a lower elementary school student)

Confusion and resentment at being unable to understand the situation. Nine participants reported confusion about what was happening when the parent died or feeling resentful about not being told about their parent's condition.I remember being asked, ‘What would you do if your father died?’ I do not know why, but I was really positive, so I said, ‘He is not going to die.’ Then all of a sudden, my mother says, ‘He is already gone.’ After all, I had not been aware of his illness until the day before his death. (then a junior high school student)

Insecurity about the future due to insufficient understanding of death. Three participants reported not understanding what death meant, even after seeing the body, or that they could not foresee the future after the parent's death.Adults were crying and calling my father's name, but they were not crying the day before. Suddenly, they all started crying and said to me, ‘Your father is going to die.’ All I could think was, ‘What does that mean? What will happen after death?’ (then a lower elementary school student)

Fear and shock evoked by the bizarre circumstances. Six participants reported being shocked by the unusual ways in which the parent acted, or the abnormal situation at the end of the parent's life; they felt fearful as a result.Seeing my father look completely different from how he used to felt like I was with a ghost, not my father. (then a lower elementary school student)

Sadness and loneliness over parting with the parent. Five participants reported that when the parent died or thereafter, they realised that he/she would never come back, and they felt sad and lonely.My father used to call me every night, right before the light went out at 9:00 p.m., just to ask me, ‘What was today's homework?’ or that sort of thing. That nightly call had stopped, and I felt lonely. (then an upper elementary school student)

Detachment coupled with inability to come to terms with reality. Four participants reported not believing that their parent had died and feeling emotionless.At that moment, it really did not strike me as real. It was as if I were watching a scene from a TV series or movie… (then an upper elementary school student)

Immediately after death

Regret about the relationship with the deceased parent before death. Five regretted their negative feelings towards their parents while they fought against cancer and hardly communicated with or failed to say goodbye to their parents.Back then, I thought my father was dirty and I felt disgusted… now I feel terrible that I felt that way… It has been a major regret for me… I am blaming myself, or how should I put it… now all I feel is, I am sorry, I am just so sorry. (then a lower elementary school student)

Loneliness due to being unable to share one's feelings with anyone. Three participants usually tried not to think about the parent's death, but whenever they felt sad, they cried alone because they could not share their feelings with anyone.I cried alone. I could not tell anyone about it. It was just too heavy a topic to share with my friends. I could not even tell my family that I was having a hard time… (then a lower elementary school student)

The confusion caused by words of encouragement. Six participants reported that their relatives’ encouragement included statements such as, “You have to pull yourself together” and “Do not cry,” but they felt pressured as a result and could not really mourn the parent's death.Because I am the eldest, they said, ‘You are the eldest sister, so you have to compose yourself’… Just because I am the oldest… (then an upper elementary school student) I remember my uncle saying to me, ‘You cannot keep crying like that’… ‘Your father will be sad’, ‘He cannot leave for Heaven peacefully,’ such statements. (then an upper elementary school student)

Heartache caused by fragmented memories around the time of death. Five participants reported that some memories from around the time of the parent's death are missing because of isolation from the parent, which now causes heartache, as they do not know how the parent's illness progressed.My memory from that time is fragmented, and it is hard for me. I do remember some moments, but it feels like some periods were skipped here and there. I have no continuous memory of how my mother dealt with her illness… (then a junior high school student)

Bewilderment caused by the unreal atmosphere. Four participants reported that immediately following the death of the parent, the balance in their daily lives was disrupted and they experienced a sense of unreality.It created a space where everyone was sad, you know… when all the people gathered, they were mourning my father's passing, the pain became even harder for me to bear… (then a junior high school student)

Several years later

Distinctive reflection on the parent's absence during adolescence. Five participants reported that several years later, during adolescence, they mulled over why their parent had died or why he/she was not there with them; these thoughts gradually decreased in frequency and eventually subsided.Sometimes I compared my situation with those of others and was faced with the reality that most people have both parents, but I do not. When that happened, whether it was a graduation ceremony or whatever, I was overwhelmed with pain and sadness. I could not control my emotions until my early twenties… But then I finally thought that I could no longer continue that way, and so I went to my father, not to get advice or anything, but to tell him that I was just really sad. Then, I realized that death is sad, and realized for the first time that it was really sad that I did not have my mother with me. That was when I could finally start the process of accepting. I guess I was in a state of shock for a long time… after mourning, I feel like I have finally been able to come to terms with her death. (then a junior high school student)

Present time

Unresolved feelings regarding losing a parent. Four participants reported that even though it had been years since their parents’ death and they are now adults, losing a parent left a deep impression in their hearts.Because I always felt that I was not good enough for anything, I wanted to talk to my father and ask for his opinion when I was struggling. I wanted someone who would reprimand me when I needed it. Sometimes in my life, I really wished that my father had been with me. (then a junior high school student) I do not know why, but I still cry, although it has been almost 20 years. I recall scenes from the funeral and the time of the passing… I wonder what it is, it is not the word ‘death.’ Whenever I remember that scene, I just become overwhelmed with sadness. (then a junior high school student).

Distress among hospital-based medical professionals providing support care to school-age children of patients with terminal cancer

Lack of knowledge/experience with children

Fourteen medical professionals reported feeling that they lacked knowledge and experience with children, and therefore had difficulties actively supporting and comforting children of patients with terminal cancer.Because I do not have my child, I feel that I have insufficient understanding of the feelings of those with children. (nurse)

Impact of medical professionals’ own personal suffering

Three medical professionals reported finding it difficult to support the children due to personal reasons, such as having lost their own parent.I know that some colleagues lost their parents when they were little, so getting involved with these children in such an environment can be stressful… (nurse)

Confusion over how much to intervene in the family context

For four medical professionals, the extent of the required family intervention was difficult to determine, since each family's situation, perspective and members are unique.How much should I intervene in a family as a medical professional? Some families do not like anyone else to get involved because it is a family matter… (nurse)

Attempts by family members to shield the child from the reality of death

Four patients or their family members did not want support care for the children because they wanted to protect them from the impending reality of death.I was told by the parent, and then by the brothers, not to tell the child about it, because it would be too difficult for the child to bear. Then, later, that child asked me, ‘How come I am being excluded? Nobody tells me anything. I have the right to know. (doctor)

Difficulty providing direct support to the children

According to 12 medical professionals, not seeing a child in person before the parent's death rendered the provision of direct support care to the child difficult.Because of school and other activities, most school-age children do not visit the hospital until the parent's condition deteriorates. Therefore, it is difficult to establish relationships with them. (doctor)

No area for children to relax (such as a playground)

Two medical professionals reported that there are no designated areas for use by children within the hospitals (eg, playrooms).There are no places where children can play. If we had a playroom, where children could forget about reality for a little while, they would be able to switch off their feelings. That might also help us try a different approach, such as talking to them while they are playing together. (nurse)

Estrangement from bereaved families once the families leave the hospital

Even though they worry about the bereaved children and family members, four medical professionals cannot maintain contact with the families once they leave the hospital.It is difficult to determine what has happened to a child after the parent's passing… After a small child has left the hospital following a parent's death, I worry about whether he or she managed to grow up without being psychologically affected. (nurse).

Discussion

This study investigated the support care provided to children of patients with terminal cancer, focusing on their distress before and after losing a parent to cancer between their elementary and high school years. The themes were classified according to chronological periods (before, at, immediately after and several years after the parent's death, as well as currently; the participants were aged at least 20 years at the time of the study). Further, the study investigated the distress of hospital-based medical professionals who support such children. The distress of children who lost a parent was a noteworthy theme. The primary themes were bereaved individuals’ sense of isolation or loneliness due to their inability to know or even share what was happening to their parents at the time, and the fear instilled by the abnormal circumstances. The results also suggested that the loss of a parent in childhood continues to affect a child afterwards. Examples of these are the distinctive reflection cited by the participants on their parents’ absence during adolescence and unresolved feelings regarding the loss of a parent.

According to previous studies, the following are important in the early identification of children at risk of long-term sequelae: low self-esteem, pre-existing mental health problems among adolescents or the surviving caregiver, non-supportive relationship with the surviving caregiver and a poor relationship with the deceased parent. Particular attention should be paid to children in whom substantial grief is induced by sudden parental death, as in the case of traumatic death or suicide.2 ,5

Another important finding was related to the distress experienced by hospital-based medical professionals while trying to provide support care to children of patients with terminal cancer. Their distress was related to personal factors (eg, lack of adequate knowledge and experience regarding children), patient family factors (eg, family members’ attempts to protect the child) and environmental factors (eg, inability to provide support due to the child's limited hospital visits, the lack of a designated area for children in the hospital, and subsequent estrangement from the deceased's family). Although there are recommendations for support care to alleviate distress in such children,9 distress related to personal factors cannot be reduced as easily as that related to hospital environmental factors.

Moreover, family factors are complex and intertwined. Adults typically shield a child from the impending reality of death at the time of his/her parent's passing because of the emotional suffering experienced by patients, their spouses and other family members.8 Thus, like children who lose a parent, spouses and other family members also require psychological support. Medical professionals’ estrangement from bereaved families necessitates community-based support centres outside hospitals. Some Japanese social associations support grieving children who have lost a parent.13

This study had several limitations. First, the study targeted individuals currently aged 20 years and older, who had lost a parent while aged 7–18 years, meaning that the interviews were conducted many years after the actual experiences. Subject recruitment may have been seriously biased towards those with long-term sequelae. Despite its complexities, a longitudinal study would be ideal in identifying the extent of the development of adverse sequelae among child cohorts. Second, the study was conducted in Japan; therefore, the findings cannot be generalised to other contexts. To the best of our knowledge, no Japanese studies have systemically explored the long-term sequelae associated with parental death. Internationally, while one study investigated children's grief reactions for 3years after parental death; few have investigated the long-term course of such children's grief reactions.2 Third, the qualitative analyses used in this study were thematic. Different qualitative analyses from those used in the current study are required, so as to facilitate theory development.

In conclusion, this study revealed the distress experienced by individuals who lost a parent to cancer in childhood, as well as the distress experienced by hospital-based medical professionals providing support care to school-age children of patients with terminal cancer. Additionally, the grief reaction to a parent's death due to cancer in childhood was prolonged, as shown by the participants’ reference to grieving long after a parent's death. Moreover, the study showed that hospital-based medical professionals find it difficult to provide direct support to such children. The above points show that comprehensive support involving organisations (eg, local communities) may be necessary for children who lose a parent to cancer.

References

Footnotes

  • Contributors HO, MO and TM planned the study. HO, MO, KS, AK and SS conducted a survey. HO, MO and KS collected data. AK, SS analysed and interpreted data. HO, MO, TM, KS, AK, SS and AO wrote the manuscript. HO, MO, TM, KS, AK, SS and AO approved finally the manuscript. HO submitted the study.

  • Funding This study was supported by grants from Japan's Ministry of Health, Labour and Welfare.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval The Institutional Review Board at National Kyushu Cancer Center, Fukuoka, approved the study. The procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000.

  • Provenance and peer review Not commissioned; externally peer reviewed.