Parents' Thoughts and Perceptions on Hearing that Their Child Has Incurable Cancer

Abstract

Background:

Parents of children with incurable cancer face difficulties in making end-of-life decisions, and thus far, little research has been conducted on the thoughts and perceptions of these parents.

Purpose:

The study aims to describe parental thoughts and perceptions when they hear that their child has incurable cancer.

Methods:

Semi-structured, open-ended interviews were conducted with 23 parents who had lost children to cancer. A constant comparative content analysis was also conducted.

Results:

Regarding parental thoughts, five categories emerged: “not allowing my child to die,” “being compelled to continue cancer-directed/life-sustaining treatment,” “wanting to put an end to my child's suffering and wanting him/her to be comfortable,” “valuing my child's wish and dignity,” and “wanting to be there for my child.” However, some parents did not mention all five categories. Regarding parental perceptions of their children's condition, six categories emerged: “understanding change/deterioration of my child's condition,” “recognition of my child's sufferings,” “awareness of the possible death of my child,” “no recognition of my child's impending death as reality,” “avoiding facing my child's death,” and “realizing the truth and coming to terms with the reality of death.”

Conclusion:

When parents were told that their child had incurable cancer, their first thought was to protect their child. Because thoughts and perceptions in such a situation vary across parents, health care professionals should support parents in realizing their thoughts and perceptions and in making decision as parents.

Introduction

Despite the remarkable advances in medicine, cancer remains one of the leading causes of death among children.¹ Even if the child is an adolescent, parents typically make end-of-life decisions for the child.^2,3 However, parents find it difficult and stressful to make decisions pertaining to end-of-life care and treatment for their children with incurable cancer.^4,5 Some studies suggest that parents' decisions regarding end-of-life care for their child are related to the child's wishes and quality of life (QOL), the parents' values, parental expectations of cure, and professional information and recommendations.^4,6–9 Hinds and collegues^10,11 reported that the core premise of parental decision making pertaining to incurable cancer is “being a good parent.” Further, it is also important for parents to properly understand their child's condition when they opt to care for their child at home at the end of the child's life.^2–14 Yet another study highlighted that even though health care professionals are aware of the incurable nature of the child's cancer, parents do not recognize this eventuality.² They have difficulty accepting their child's impending death.⁵ Research has yet to fully clarify the complex nature of parental decision making pertaining to incurable cancer.^11,15 Descriptions of parents' thoughts and perceptions regarding their child's condition, in particular, is a topic that has not been covered in detail.^10,11,15 Parental decision making about end-of-life care is associated not only with the QOL of the child, but also with the grief and depression that parents go through after the child's death.^16–18 It is important for health care professionals to support parents, help them come to terms with their child's condition, and aid in making end-of-life decisions; this is important so that parents can still have a sense of parenthood after the child's death. We conducted research to clarify parents' thoughts and perceptions regarding their child's diagnosis with incurable cancer and to understand the changes that occur during the end-of-life decision-making process.

Method

Participants and procedures

Eligible parents were identified with the assistance of eight hospitals and nine support groups throughout Japan. The first author, who is the main researcher in this study, contacted the hospital administrators and support groups and informed them about the study. A total of three hospitals and five support groups agreed to cooperate. The author was then introduced to eligible parents, and a letter that briefly described the study was posted to them. The aims of the study were reiterated in a follow-up phone call. On willingness to participate, an appointment for an interview was set up. Twenty-three parents (including one couple) of 17 children who had died of cancer within the previous 1 to 3 years were recruited for this study. Written consent was provided, and all participants agreed to tape-recorded interviews. Approval was obtained from the authors' university, the hospital institutional review boards, and the officers' committee of support groups. The author also made prior arrangements so as to refer parents in need to appropriate resources in case a parent in distress and in need of professional support was identified during the interviews. However, no such referrals were necessary.

Then, semi-structured, open-ended interviews were conducted. Parents were questioned about their thoughts and perceptions on hearing that their child had incurable cancer. The researcher helped the parents to narrate, as freely as possibly, their experiences pertaining to their child's treatment. One face-to-face interview was conducted with each parent, separately, except for the couple, who requested a joint interview. Most of the interviews were conducted in the parents' homes.

Analysis

All the interviews were transcribed, verbatim. The sentences or contexts associated with parent's thoughts and perceptions regarding their child's condition were coded, all the while ensuring that the original meaning was not altered, even slightly. In this study, “thoughts” were defined as the parent's ideas and feelings regarding the course of action to be adopted for their child on hearing that he/she had incurable cancer. During the analysis, we paid specific attention to parents' responses to questions such as, “What did you think or how did you feel, and what did you want to do for your child when you heard that he/she had incurable cancer?” “Perception” was defined as the parents' perspectives on their child's condition on hearing that their child had incurable cancer.

Common or similar codes were categorized together as a temporary measure. Then, the new categories that emerged were validated or refined vis-à-vis the previous categories. The authors discussed all the categorizations until they arrived at a final consensus. These final categories were validated by the administrator of the peer support group, who is also a mother of a child with cancer and who had previously lost a nephew to cancer. However, this woman was not a participant in this study.

The indentified categories and quotations were translated from Japanese into English by the first author. The translated version was validated and modified by a bilingual Japanese–English translator. The modified English version was reexamined by the authors of this paper and was deemed accurate.

Results

Participants

A total of 16 mothers and seven fathers aged 32 to 47 years were interviewed. Their children—nine boys and eight girls—had died between the ages of 2 and 16 from various types of childhood cancer: six had had hematologic malignancies, six solid tumors, and five brain tumors. Each parental interview was conducted after 2.7 years on average (range: 1–3.10 years) after the child's death. The mean interview time was 98.54 minutes (range: 45–164 minutes).

Parents' thoughts and perceptions on hearing that their child had incurable childhood cancer

Parents' thoughts.

Five categories emerged—“not allowing my child to die,” “being compelled to continue cancer-directed/life-sustaining treatment,” “wanting to put an end to my child's suffering and wanting him/her to be comfortable,” “valuing my child's wish and dignity,” and “wanting to be there for my child” (Table 1). However, thoughts such as “wanting to put an end to my child's suffering and wanting him/her to be comfortable” and “valuing my child's wish and dignity” were, in general, expressed by only some of the parents.

Table 1.

Parent's Thought and Exemplars

Categories	Subcategories	Exemplars (case number; child's age/sex)
Wanting to be there for my child		“No matter what I had to be with her as long as I could.” (J; 7 y /female, mother)
Not allowing my child to die	No option but cure	“To cure my child, that was all I wanted.” (K; 7 y/male, mother)
		“After all, I ultimately wanted my child to cure.” (G; 6 y/girl, mother)
	Not allowing my child to die	“I couldn't accept losing my child.” (B; 2 y/male, mother)
		“My wish was just to be with him. I was happy just being with him while he was alive.” (I; 6 y/male, mother)
Being compelled to continue cancer-directed/life-sustaining treatment		“It was not an option to choose no treatment. My child would die without a treatment. No way!” (O; 10 y/male, mother)
		“Giving up? How can you think about it? We won't accept losing our child, so we let him go through as many treatments as possible while we have options.” (B; 2 y/male, mother)
		“I pin my hope on even a small chance for my child.” (K; 7 y/male, mother)
Wanting to put an end to my child's suffering and wanting him/her to be comfortable	Not allowing my child to suffer	“I didn't want to let him undergo a BMT again. No more pain.” (C; 3 y/male, father)
		“Pain control was the highest priority for him. No more suffering.” (Q; 16 y/male, mother)
	Wanting to let nature take its course for the last time	“I wanted to let nature take its course. It wasn't good for him being kept alive with a respirator.” (C; 3 y/male, father)
		“I don't want to have life-sustaining treatment; I wish for no more suffering for him.” (P; 15 y/male, mother)
	Having my child be happy for as long as possible	“I just wished my child would be able to be comfortable for as long as possible.” (C; 3 y/male, father)
		“It is much better to let my child be happy for as long as he could.” (Q; 16 y/male, mother)
	Having my child spend time in comfort	“I always thought about and wished to give my child a comfortable time.” (A; 2 y/female, mother)
	Letting my child do anything that makes him/her happy	“Letting him do anything he liked was my wish.” (Q; 16 y/male, mother)
	Having my child spend time with family	“I thought I could make time for him to be with his siblings.” (C; 3 y/male, father)
		“He would not be able to see his family as far as he was in PICU. So, I decided to let him move back to the general ward to be with friends, nurses, and doctors. It was the least I could do for him.” (M; 9 y/male, father)
Valuing my child's wishes, preference, and dignity		“Being at home with family was the best for her, I knew it. That's why I wouldn't let her stay in the hospital.” “It was the priority to think about what she wanted or hated. It was a big contradiction not to do it for the last time. It's nothing.” (J; 7 y/female, mother)
		“My child said to me that he didn't want to have any treatment any more in case of no cure was possible.” (N; 10 y/male)

BMT, bone marrow transplantation; DNR, do not resuscitate.

Parents' perceptions.

Six categories pertaining to parental perceptions regarding their child's condition emerged—“understanding change/deterioration of my child's condition,” “recognition of my child's sufferings,” “awareness of the possible death of my child,” “no recognition of my child's impending death as reality,” “avoiding facing my child's death,” and “realizing the truth and coming to terms with the reality of death” (Table 2). Two categories were represented by all parents: “understanding change/deterioration of my child's condition” and “recognition of my child's sufferings.” However, when it came to parental perceptions about death, the category “realizing the truth and coming to terms with the reality of death” was represented by only some of the parents. Therefore, even though the parents were in the same situation, their perceptions of their child's condition, especially the impending death of the child, varied.

Table 2.

Parents' Perceptions Regarding Their Child's Condition

Categories	Subcategories	Exemplars (case number; child's age/sex, parent)
Understanding change/deterioration of my child's condition		“I knew. I knew the lymph node under her left neck had been got bigger and bigger.” (J; 7 y/female, mother)
Recognition of my child's sufferings		“I know how painful the treatment with BMT is. I saw my son fighting with its pain for his life during the treatment.” (C; 3 y/male father)
Awareness of the possible death of my child		“I used to have a feeling that my child would die while he was going through DLI.” (K; 7 y/male, mother)
No recognition of my child's impending death as reality	Understanding death in my head but not in my heart	“I never thought my child would die. I understood death in my head, but not in my heart.” (K; 7 y/male, mother)
		“To not be cured and to die are different.” (E; 5 y/female, mother)
	No thought of my child's death/No thought of impeding death	“I never thought of my child would die.” (J; 7 y/female, mother)
		“My child still would have had a future, if he would have had an option for palliative chemotherapy.” (B; 2 y/male, mother)
	Not accepting my child's death	“I never gave up and couldn't let her die.” (A; 2 y/female, mother)
		“I was scared of my child's death, and I had no idea what to do when I lost her.” (J; 7 y/female, mother)
	No readiness for losing my child	“It was exactly like bracing myself to choose palliative chemotherapy. No way!” (B; 2 y/male, mother)
	Having an incompatible feeling	“I knew my child would die and I was getting ready for it. But I also felt that on the other hand, he would be cured. I thought I had to be ready for it with a belief of being cured. It was a big contradiction, though.” (I; 6 y/male, mother)
	Still alive with brain death	“Her heart was still working, so she was still alive. I didn't think of it as the end of her life.” (F; 6 y/female, father)
Avoiding facing my child's death	Effort to think that “my child is OK”	“She is my child. How can you accept your child's death?” (L; 7 y/female, mother)
		“Her chance of being cured was 10%, but not zero.” (D; 4 y/female, mother)
	Avoidance of the hard facts by ignoring them	“I felt that ‘death’ sat in a corner of my mind. Even though I knew it, I strongly believed he would be cured. I felt it stronger than the fear of his death.” (I; 6 y/male, mother)
		“I wanted to know what was going on with my son. But I didn't like to know what I hadn't liked.” (B; 2 y/male, mother)
Realizing the truth and coming to terms with the reality of death		“I see. … Well, it's a fact, maybe. Who can accept the death of a beloved child? But it was the time to think about it. I guess I accepted it when I felt the moment was coming.” (J; 7 y/female, mother)
		“I knew I was losing my child when he had another relapse. I still wished for a miracle like in a TV drama, though.” (C; 3 y/male father)

DLI, donor leukocyte infusion.

Discussion

The categories pertaining to parental thoughts emerged from certain common aspects found in the expressions of the parents, such as protecting their child's life, keeping their child comfortable and happy, and respecting their child's wishes and dignity. Although some categories were represented by only some of the parents, their common thought on hearing that their child had incurable childhood cancer was to support and protect the child,¹⁹ which is regarded as one of the most important parenting roles,²⁰ and is part of “being a parent” itself. In particular, two categories—“wanting to put an end to my child's suffering and wanting him/her to be comfortable” and “valuing my child's wish and dignity”—sum up parents' thoughts about protecting their children beyond life and death; this may be a common consciousness shared by parents and forms part of what being a parent actually means. This view is also supported by previous studies: part of “being a good parent” is making decisions regarding phase I or other end-of-life treatments.^10,11,21 This result also accords with another finding on parents' desire to play a vital role and assume responsibility for their critically ill child or child with nonmalignant disease.^22,23

The parent's thought category of “being compelled to continue cancer-directed/life-sustaining treatment” represented an important parental feeling: that of pinning all their hope on a slim chance and not giving up. This category is similar to that in Maurer's study and other reports^11,15 This result is also similar to the findings of reports that explored the experiences of parents who participated in clinical trials; this experience can be summed up as “wanting the best for my child.”²⁴ However, the comparable category in our study—“being compelled to continue cancer-directed/life-sustaining treatment”—is remarkable in that parents gave due consideration to the options of aggressive treatment for their children rather than choosing just any form of treatment. Some researchers state that parents of children with cancer typically pursue potentially curative treatments until cure is no longer a medical possibility, compared with parents of infants with cancer who were treated in a neonatal intensive care unit, or of children who died of sudden infant death.^10,25 The parents of a child with relapsed cancer constantly live with the hope of cure, the fear of loss of their child,²⁶ and a threat to their roles as parents.²⁷ Nuss²⁷ stated that parents experience “parental vulnerability” when making decisions to stop treatment for their child. In this sense, they feel that halting treatment implies that they no longer care for their child as parents ought to^28,29; this might lead them to feel compelled to continue with more treatment. If health care professionals offer parents information about the selection of treatments when discussing the child's incurable condition, these parents, whose thoughts fall under the category of “being compelled to continue cancer-directed/life-sustaining treatment,” are likely to choose to continue with more treatment because they feel that as parents, it is their role to make use of available treatment in order to save their child's life.^11,25 Therefore, it may be a novel aspect for parents to be compelled to continue with treatments for children with incurable cancer. However, most cancer-directed treatments cause substantial physical discomfort to the person undergoing them. The results of this study suggest that parents will experience ambivalence and inner conflict with their belief that their role as parents is to protect their child, if the prolonged treatments they choose cause suffering to the child.

In this study, the parents who had thoughts such as “wanting to put an end to my child's suffering and wanting him/her to be comfortable” or “valuing my child's wish and dignity” might have been reminded of times when their child was well and comfortable and when the child expressed a certain wish, desire, or preference before he or she was diagnosed with childhood cancer or while undergoing standard treatment for his or her childhood cancer. These parents might have been aware of their role of “being a parent” by thinking that their child really had a childhood even during the treatment process. This result is similar to that found by Kars and coworkers,³⁰ indicating that by being there for their child, by being involved in their daily lives, parents are able to exercise a meaningful parenthood. However, because these thoughts were not expressed by all parents, it is accurate to say that parents find it difficult to realize that their thoughts such as “wanting to put an end to my child's suffering and wanting him/her to be comfortable” were natural while going ahead with treatment for their child to save his or her life.¹⁰ Another researcher pointed out that the parental identity is forged when dealing with a child suffering from a disease such as cancer.³¹ Parents find it difficult to assume and fulfill their parental roles in light of the trajectory that childhood cancer treatments inevitably take.³² Therefore, it is important for doctors as well as the health care nurses—whose major role is the daily care of the child and the parents—to participate in the end-of-life decision-making process. Health care providers need to support parents by letting them think that they can protect their child, while sharing in the experiences through which parents have been able to realize the sense of “being a parent.” Moreover, health care professionals need to talk to parents about how to spend time with their child, what care or treatment is available so that their child can spend the remainder of his/her life like a child should, and more importantly, whether by undertaking these tasks, they can retain a sense of being parents.¹⁰ This form of support might allow the bereaved parents to share the feeling of having been parents of the child; this is one of the most important feelings for parents when they have to make end-of-life decisions for children.^20,21

When parents were informed about the incurable nature of their child's cancer, their perceptions, especially about death, varied. This finding corresponds to that of a previous study.² Although all the parents were aware of their children's suffering, some parents had perceptions such as “no recognition of my child's impending death as reality.” This result is supported by studies suggesting that compared with health care professionals, the parents of children with cancer tend to be more optimistic about their children's prognosis.^33,34 In this study, “understanding death in my head and but not in my heart” emerged as a subcategory to the perception of “no recognition of my child's impending death as reality.” Moreover, “realizing the truth and coming to terms with the reality of death” meant that the parents had understood their child's condition emotionally rather than intellectually, a finding that is also supported by a previous study.³⁵ This previous study suggested that parents' emotional understanding of their child's impending death is associated with differences regarding parental end-of-life decision making.³¹ Based on our findings, the context in which parents are aware of and understand their child's impending death is very complex and differs from parent to parent.³⁶ Parents who are about to lose their child need clear, honest, complete, and thoughtful communication regarding their child's prognosis at the end-of-life stage.^{4, 37–40} In accordance with previous studies, we also suggest that health care professionals need to be aware of possible differences in parental perceptions and respect these^10,31; health care providers also need to share accurate information with parents so that parents are able to understand their child's condition, both intellectually and emotionally, and come to terms with it.

Although “avoiding facing my child's death” was one of the parental perceptions expressed, this category can be viewed as natural parental thought and feeling because parents want to protect their children from death. Some parents even mentioned “wanting to put an end to my child's suffering and wanting him/her to be comfortable” as a way of protecting their child. In other words, parental thoughts and perceptions may be related and may influence each other, a view supported by previous studies.^10,34,41 Moreover, our findings also suggest that through the end-of-life decision-making process, the consciousness and meaning of “being a parent” can extend beyond life and death. This suggests that it is important for health care professionals to pay close attention to not only the individual thoughts and perceptions of parents regarding their child's condition but also the relationships between these thoughts and perceptions during the end-of-life decision-making process.

Although parents were recruited from various institutions, the study sample, comprising 23 parents of only 17 children, and the type of disease studied are not sufficient. Therefore, the results of this study should be applied cautiously because some of the results may be particular to only one set of parents of a child with incurable cancer. Some findings are consistent with the results of studies conducted in other countries, particularly those concerning parents' thoughts and the consciousness of “being a parent.” Regardless of these limitations, the findings described herein can help health care professionals working with parents of children with incurable cancer to better understand parental thoughts and perceptions. The parental goal of providing treatment and care can change in the course of the child's illness.^15,41–43 Further research is required for a more in-depth understanding of the process of parental end-of-life decision making, including the relationships between individual parental thoughts and perceptions and the transformation or altering of parental thoughts and perceptions. Such research can help parents to provide the necessary support their child needs during end-of life treatment and to have a sense of parenthood after the child's death.

Footnotes

Acknowledgments

We thank all the parents who participated in this study. This study was funded by the Yamaji Fumiko Nursing Research Fund.

Author Disclosure Statement

No competing financial interests exist.

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