Japanese parents’ perception of disclosing the diagnosis of cancer to their children

Abstract

In Japan, the practice of disclosing the diagnosis of cancer to young people varies between hospitals. Some hospitals respect parent’s wishes and do not to tell young people about their diagnoses whereas others encourage parents to adopt their policy of informing patients. Unfortunately, there is no research about parents’ adjustment to either course of action. This study examines parents’ perspectives regarding this decision. Parents (55) and grand-parents (3) were interviewed about their experience of sharing or not sharing the diagnosis with their children. Analysis of the interviews reveals a complex picture in which parents struggle to balance their emotions, their representation of ‘cancer as death’, their views of their children’s level of understanding as well as the positive and negative effects of disclosure on their children. We suggest that knowledge of parents’ perspectives can be useful to health professionals who support parents living with this dilemma.

Keywords

Childhood cancer diagnosis disclosure parents coping with paediatric cancer

The aim of this study was to understand parents’ experiences in relation to disclosure of a cancer diagnosis to their children. The study was carried out in Japan, where there is a great deal of concern about whether patients should be told that they have cancer (Parsons et al., 2007; Seo, Tamura, Shijo, Ikegame, Hirasako et al., 2000). Investigations with paediatric cancer patients have suggested that disclosure of the diagnosis in the early stages of the treatment enhances psychological adjustment in children and families (Slavin, O’Malley, Koocher, & Foster, 1982). In Japan, the importance of informed consent and diagnosis disclosure is part of a recent debate, which emerged in the 1990s, from an ethical point of view, based on the Rights of the Patient (World Medical Association, 1981) and the Convention on the Rights of the Child (Parsons et al., 2007; Seo et al., 2000; United Nations High Commissioner for Human Rights, 1989). However, disclosure is not a universal policy among the hospitals in Japan and not all young people are told their diagnosis.

Compared to other countries, such as the UK and the USA where disclosure is a common practice (Parsons et al., 2007), the treatment environment in Japan may support non-disclosure practices. In Japan, patients up to 18 years old are treated in the paediatric department, alongside children with illnesses other than cancer. An oncology ward normally does not exist within paediatric departments in Japan, but some children’s hospitals may have a haematology or oncology department. In the UK, where the wards are identified as ‘oncology’ wards, disclosure may be necessary as the young people can infer the diagnosis sooner or later. In contrast, in Japan young people may go through treatment without knowing their diagnosis as there is no obvious information in the treatment environment.

Young people with cancer in Japan are often protected from the environment outside the hospital and treated most of the time as in-patients, at least during the first six months after diagnosis. Most hospitals that deal with paediatric cancer patients with long-term admission have hospital schools, which is a division of the school in the district where the hospital is situated. Hospital schools cover primary and secondary schooling, from the age of six to 15 years, and it is common for young people with cancer to transfer from their local school to the hospital school. Thus, young people in Japan have less contact with their regular school peers who would be curious about their illness, and ask about the diagnosis, whereas in countries like the UK these young people continue to attend their regular school, are likely to be asked questions by their peers and may even experience bullying as a consequence of the illness (Pretzlik, 1997). Parents in the UK may be urged to disclose the diagnosis so that their children can protect themselves at school, but in Japan parents may not need to take immediate action on disclosure.

The treatment environment in Japan may not urge physicians and parents towards diagnosis disclosure. However, approximately 70% of young people survive cancer and go on to live normal lives, so disclosure becomes important due to long-term medical (e.g. relapse, long-term physical disruption), psychological and social issues (e.g. discrimination in employment, rejection from insurance companies) that follow paediatric cancer (Tanigawa, Inada, Komamatu, Mibu, & Saitou, 2000).

Disclosure of a cancer diagnosis to children in Japan is not as common a practice as in the UK or the USA; some parents prefer to withhold the diagnosis. A survey of 372 paediatricians in Japan (Kaneko & Matushita, 1995) showed that only 35.6% had experience in giving information about the diagnosis to young people, including identifying the specific type of cancer. Among those paediatricians who did not have this experience, 60% thought that it is important to share the information with the young person. The most common reasons cited for not disclosing the diagnosis were that ‘There are no support systems in the hospital to care for the child after the diagnosis is given’ (38%) and that ‘The parents are against giving the diagnosis to their children’ (35%). A more recent survey by Parsons et al. (2007) comparing attitudes in the USA and Japan shows that only a minority of Japanese paediatricians adopt the policy of disclosure, whereas the majority leave it to the parents to make a decision regarding what their children will be told. This comparative study showed that 65% of paediatric oncologists in the USA (n=350) always disclosed the diagnosis whereas in Japan (n=362) only 9.5% of paediatricians did so. Paediatricians in both countries reported that parental request definitely influences how much information should be disclosed to their children (USA, 72.3%, Japan, 73.1%).

In the UK, parents also play a major role in the disclosure of information to their children (Clarke, Davies, Jenney, Glaser, & Eiser, 2005; Eiser, Parkyn, Havermans, & McNinch, 1994; Young, Dixon-Wood, Windridge, & Heney, 2003). These studies report that, at the time of diagnosis, most parents do not have much specific knowledge about cancer, which influences the type of information their children receive. Clarke et al. (2005) report that amongst 55 mothers of children (mean age 7.3 years) with cancer, almost half of them initially thought that leukaemia would necessarily lead to their child’s death, although data on the treatment of childhood leukaemia shows that 71% of all childhood cancer patients in the UK currently survive for at least five years after diagnosis (Gatta, Corazziari, Magnani, Peris-Bonet, Roazzi, Stiller et al., 2003). The other half of the mothers reported that they felt in shock and ‘could think only of saving the child’s life’ (Clarke et al. 2005, p. 278). Mothers felt unable to understand or absorb the details of the diagnosis and the information they were given. The information they provided to their children varied from minimal (poor blood, not mentioning the severity of the disease), through different levels of factual information (knows cancer but not the severity) to full disclosure (including the possibility of death), depending on the parents’ perception and understanding of the illness. Parents disclosed more detailed information to older children (mean age 12.0 years).

In line with Clarke et al.’s (2005) findings, Eiser (2004) reports that most parents do not know that the survival rate for childhood cancer has increased until this is explained to them by the paediatrician. This suggests that parents’ representations of cancer (i.e. their knowledge of the illness, death and remission rates, of treatments and their side effects as well as their fears and uncertainties about the future and the associations they have with the word cancer) may be one of the reasons preventing them from disclosing the diagnosis.

Other studies show that the timing and source of information varied: some children were told soon after their parents had been told; some were told with their parents present; and some were considered to be too young to understand and were informed by the parents later (Eiser et al., 1994; Young et al., 2003). The decisions made by parents regarding when and what to disclose seem to be influenced by their own knowledge of the illness and their perception of their child’s maturity.

Sharing the diagnosis with young people who have cancer is a difficult decision for the parents. Parents are usually the first to be informed: they need to understand the implications of the diagnosis and cope with their own reactions to their children’s potentially life-threatening illness. They have to make decisions about what and how their children should be told about the illness (Clarke et al., 2005; Young et al., 2003). Consequently, the type of information conveyed about the diagnosis may depend on how the parents cope with their own reactions, and what they feel their child should know at what time.

In Japan, where the treatment environment does not require immediate disclosure, the decision to reveal the diagnosis in the early stages of the treatment may demand more commitment from the parents to a particular course of action. This suggests that understanding Japanese parents’ experiences, after they have decided whether to disclose the diagnosis to their children, could shed light on the consequences of this decision for the parents. It is increasingly recognised that health carers must understand the experiences of patients and their carers in designing environments and other aspects of treatment that impact psychologically on them. Thus this study aimed to examine Japanese parents’ perceptions of diagnosis disclosure and how this decision affected their subsequent relationship with their children. This question was investigated by interviewing parents about their experiences at the time of their children’s diagnosis and their reactions concerning the amount and type of information disclosed.

Method

Participants

Participants were 53 mothers, 2 fathers and 3 grandmothers. Their children’s age range was 6–18 years (mean age 10.8 years); all were undergoing cancer treatment. Although some participants would no longer be considered children but rather as adolescents, all participants will be referred to as children for simplicity. The time since diagnosis ranged from 1–57 months; the mean interval since diagnosis was 15.5 months.

Ethical approval for the research was obtained from Oxford Brookes University’s ethics committee and was in line with the British Psychological Society’s guidelines. Recruitment was through hospitals in Japan, contacted by the researcher who explained the nature of the investigation and provided an information sheet and consent forms to be used in the study. Consent was obtained from the Directorates of the hospitals, doctors, parents, and the young people themselves. The families were recruited from six hospitals in the Tokai (midland) area of Japan.

The diagnosis had been disclosed to 40 children: 18 parents had not disclosed the diagnosis. In this paper, the children will be referred to as informed or not-informed, respectively, according to whether the diagnosis was disclosed or not. It is recognised that children are active in interpreting information they can glean from the tests and treatment they undergo, and may relate their personal experiences to information available in the press. It is also recognised that they may receive some information about their illness without disclosure of the diagnosis: it is, indeed, inconceivable that any patient would receive no information at all. However, the issue under consideration here is the disclosure of the diagnosis, which is a crucial decision for parents.

The age range for the not-informed children was 6.3–13.3 years old and for the informed children was 6.4–17.8 years old. Pseudonyms were given to the participants to protect their identity and assist in following the data analysis. The children’s specific diagnoses included: acute lymphoblastic leukaemia, acute nonlymphocytic leukaemia, lymphomas, brain tumour, Ewing’s sarcoma, osteosarcoma, rhabdomyosarcoma and neuroblastoma. In order to protect the participants’ identities, the expressions ‘cancer’ and ‘leukaemia’ will be used without further specification of the diagnosis.

Data collection

Semi-structured interviews were conducted with the aim of examining what information the parents received at the time of diagnosis, how this information was conveyed to them, what they told the child, their perceptions regarding the information that children should be given and the significance of disclosure to the child. The interviewer (AW) is a native speaker of Japanese, the language used in the interviews. Appendix 1 contains a list of the questions (translated into English) that were used when asking the parents to think about disclosure. The questions were back-translated by a native speaker of Japanese, a graduate student in psychology. Alternative forms are used in the English translation (‘what do you think’ and ‘how do you feel’) because there is no simple overlap of meanings between these two verbs in English and the Japanese words ‘kangaeru’ and ‘omou’. The word ‘kangaeru’ is used in more formal interactions and the word ‘omou’ less formally. The researcher used both ‘omou’ and ‘kangaeru’ in her questions and the parents would have used ‘omou’ in their answers. ‘Omou’ means think and feel, at the same time, like ‘how do you feel about x?’ in English. The back-translation from English into Japanese produced the word ‘kangaeru’ both as the translation for ‘what do you think’ and ‘how do you feel’, revealing the difficulty with translation into English.

The interviews were part of a wider investigation into the social context of the treatment of children with cancer, the types of stressors that they face, and the coping mechanisms that they use (Watanabe, 2007); only those questions related to parents’ views of the disclosure process are considered here. The interview schedule was used flexibly to allow parents to speak freely, and the interviewer ensured that the different topics had been addressed before ending the interview. The interview started with questions about the time around the diagnosis, the circumstances of its disclosure to the parents and the child, and their assessment of how this process had worked for them. Subsequent questions focused on how the child was dealing with the treatment at the time and how the parents felt about giving information to their child.

The interviews were tape-recorded when possible and transcribed verbatim: subsequently, a thematic qualitative analysis of the interviews was carried out. The texts were imported into NVivo, which allowed the researcher to classify portions of the text by theme and later carry out a synthesis of the parents’ descriptions of their feelings and perceptions of the situation.

Procedure

At the start of the interview, parents were asked for consent for tape-recording: 42 participants agreed and, for those who preferred not to be recorded, the researcher took written notes. The interviews were conducted on a one to one basis and took place at the hospitals where children were being treated, either in the consulting room, nursing room, playroom, classroom or a quiet area in the outpatients ward.

Results

The transcripts were analysed by using thematic analysis which is a method for identifying, analysing and reporting patterns within data. All of the interviews were fully transcribed in Japanese: three were selected randomly and translated into English for the initial thematic analysis. These interviews were read, discussed and analysed by the research team which included the authors plus one psychologist.

The initial themes emerging from these interviews identified explanations for why parents wanted, or did not want, to disclose the diagnosis to their children. Then the first author read the remaining interviews in Japanese, coding the data, expanding and refining the initial thematic analysis. Finally, extracts from all of the interviews under each theme were translated into English and discussed and checked with the other authors. Each of the five main themes emerging from the analysis is listed below and subsequently analysed.

Parents’ perception of cancer

Parents’ perceptions of cancer were expressed mostly when they were talking about the time of diagnosis. Their discourse was scrutinised for the descriptors that they used when referring to the illness. This showed that 38 parents used words such as ‘death’ and an illness ‘to hide’. These perceptions are exemplified in the subsequent quotes. Relevant portions of the interview are presented in bold type. In order to show that some parts of the interview were deleted for brevity, (…) is inserted in the transcript; hesitations are not marked in the text.

Cancer is death The association between cancer and death was the most common reaction emerging in the interviews. This did not seem to relate systematically to whether parents decided to disclose the diagnosis.

Mother of Andy, 10.5 years old, not-informed

Inside me it was, leukaemia equals death to me. It was like that at that time. When I took the nursing certificate at school it was like that. I didn’t have any knowledge of it. I knew it was cancer but I wasn’t clear about it. I thought he wouldn’t get cured, that was going through my mind. When we came here and we talked to the physician in charge, they told us that the survival rate for childhood haematology was rising and that was a relief. (…) Our relatives thought that he wouldn’t live. There were relatives who came over to pay their last visit, to say farewell.

This extract exemplifies the parents’ representation of the illness at the time of diagnosis. The perception of cancer as death is not confined to the parents: it is illustrated in this extract as the mother mentions that relatives came to say their farewells.

An illness to hide Some parents raised the issue of hiding the diagnosis of cancer from others, even if the diagnosis had been disclosed to the child.

Mother of Vicky, 16.6 years old, informed

The neighbours don’t ask, I guess they think something is wrong, this happens sometimes, she [Vicky] tells me that ‘they asked’. If they don’t ask, there is no need to tell them. I don’t want them to make it into something big. (…) People say that it’s nothing to hide. Then, again, you don’t need to tell everyone.

Mother of Ted, 11.5 years old, not-informed

How shall I say this, if it becomes known, maybe people will walk away from him when it comes to marriage. Also, when he gets older, (…) when he has to join an insurance, he has to write down all the previous illnesses. When he writes that he can’t lie. I haven’t told him yet. I wonder what’s going to happen. Parents would hide it [the diagnosis], wouldn’t they?

Both parents indicate that there is a stigma attached to cancer and this might be a reason to hide the illness. Vicky’s mother seems to be struggling with this. She asserts that others say that it is nothing to hide but, at the same time, does not feel she needs to tell everyone. Ted’s mother also worries about the negative images of the illness and worries about how others will react towards Ted later. If the diagnosis is not disclosed to him, he would not have to lie about his past illnesses.

Parents’ concerns about not disclosing the diagnosis to children

There were 18 mothers who did not disclose the diagnosis to their children. Three key issues concerned these parents: (a) worrying about whether their children could know the diagnosis in spite of lack of disclosure and about the child’s reaction if they really knew; (b) the possibility of being confronted by their children, if they found out in other ways; and (c) the consequences of their children obtaining this information unexpectedly.

Worrying about the child’s reaction Parents who did not disclose the diagnosis were uncertain about their children’s reactions towards their illness and the treatment, if they found out the diagnosis from other sources.

Mother of Andy, 10.5 years old, not-informed

He doesn’t know what his illness is. He doesn’t know the details of the illness. And recently he seemed to kind of know what it is. (…) I am a little worried. Well, but he seems to think that it is a disease that will be cured. That’s what we believe and that keeps him going. I feel if that comes falling down it would be an awkward situation. Actually, we wouldn’t know what would happen afterwards. It’s a very difficult age. I do wonder whether he knows it or not. What will happen when we tell him the truth? Maybe he might throw out everything and he wouldn’t move forwards. I am worried about that.

Andy’s mother thinks that he might suspect what his diagnosis is but, if he was actually told, he might stop believing that he could be cured and might be unable to cope with the treatment.

Confrontation of the parent by their child Some parents were confronted by their children, who asked directly whether they had cancer or leukaemia: others worried about what they would say if they were confronted by their children.

Mother of Lisa, 13.3 years old, not-informed

She’s been told about the treatment. If she’s not, she will be thinking ‘why?’ and she needs to be prepared. The doctor explained to her what she is going to do next and also about the medicine. There was a time when she asked me what is the name of her illness. I told her to ask the doctor. I forbade the doctor to say it. The doctor told her in an indirect way; since then she hasn’t asked about it again. So maybe she understood it.

What happens if the children receive the information unexpectedly When the diagnosis was not disclosed, it was still possible for the children to find out without the parent’s involvement. This did happen with two children who found out neither from the parents nor from the medical team but from the media or from other patients in the ward. There is always the possibility that children will try to make sense of their diagnosis through whatever information is available to them.

Mother of Neal, 9.9 years old, not-informed

A television crew came into the ward to film a child on a theme of graduation, and this child already knew the diagnosis. (…) Everyone just wanted to watch it, because it felt like they were on it as well. (…) And then there was ‘leukaemia’ on the title. Well, my child was okay, but the children, above junior high school, were like ‘What?’ (…) The children in the same ward who also had gone through the transplant will think that it’s the same illness, won’t they? (…) So, you can’t tell the children the diagnosis and ask them to keep it a secret. ‘I’ve got this illness, what’s yours?’ there is a possibility that they might say that.

Parents’ views about disclosing the diagnosis

Amongst the parents who had disclosed the diagnosis, there were some who found it difficult to do so initially, especially at the time of diagnosis. Despite this, as illustrated in the following extracts, these parents think that disclosure has positive outcomes: it facilitates communication between the parents, the child and the paediatrician; the child feels secure about the interpersonal situation; and this protects them from receiving information unexpectedly.

Open communication Parents who informed their children mentioned that giving information keeps communication with their children open. These parents felt that they could not hide the diagnosis or lie to their children about it and would not have to constantly worry about whether they would hear it from someone else. These parents seemed to be more relaxed about dealing with children’s exposure to information relating to their illness.

Mother of James, 6.7 years old, informed

We don’t have to suddenly change the TV channel or change the subject at home. Everything is in the open. Nowadays, you know, there are people with leukaemia on TV. We watch it together, and he says things like ‘His is not same as mine.’ It’s an adult’s type of myloid leukaemia. It’s so relaxed when there is nothing to hide.

Feeling secure about the interpersonal situation Parents reported that disclosing the diagnosis prevents them from uncertainties and worries about going through the treatment and from the shock of accidental discovery of the diagnosis.

Mother of Peter, 10.3 years old, informed

I heard that they tell everything at this hospital. I preferred not to tell him at first. But he is getting used to it. If he didn’t know, I think he would always feel anxious about what is going to happen every time. If he knows, it will also be easier for the doctors to explain the treatment to him, when he has the drips, like ‘This is to make the cancer smaller.’ Then he knows what’s going on. I am pleased that he knows about it now, but I didn’t want to tell him in the beginning.

The contrast between the concerns that parents have when they chose not to disclose the diagnosis, reported in the previous section, and the confidence that parents report after having disclosed it, even if they were initially uncertain about whether this was the right course of action, is noteworthy.

Parents’ view of their children’s ability to understand

It is very difficult for a parent to decide what information to give to their child. In this study, 55% of the parents mentioned that understanding the illness may depend on the age and level of development. The analysis of parents’ views in relation to their children’s ages revealed that: (a) out of 28 parents who had children younger than 10 years, 15 parents thought that their children would not understand how serious the illness is and that they would be shocked when they came to an age when they could understand it; (b) out of 17 parents of children aged 10–13 years, six parents believed that the children were old enough to understand how serious the illness is, but some thought that the children might not be able to deal with this fact; (c) all 13 parents of children aged 14 years or older thought that they were old enough to understand and deal with the illness.

Table 1 shows examples of views expressed by parents of children in age groups of 6–9 years and 10–13 years. Parents of children younger than 10 years did not think that the child really understood the severity of the illness that they had. Katie’s and Chris’ parents thought that their children would not really understand but they came to different conclusions about informing their children. The views of Ally’s and Ken’s parents illustrate the change perceived by parents when their children are 10 years or older. Ally’s mother perceived her child as old enough to understand the seriousness of the illness and deal with this information: her parents decided to disclose the diagnosis to her as they thought that they could not keep lying to her. Ken’s parents thought that he should be a bit older before disclosure. Ken’s mother is now worried about the consequences of keeping the information from him and actually wishes that he would create an opportunity for disclosure.

Table 1.

Parents’ views of their children’s understanding of the illness across ages.

Informed	Not-informed
Mother of Katie, 8.5 years	Mother of Chris, 8.4 years
I want her to know what kind of illness she has. For example, in her case her bleeding didn’t stop but it did now. I don’t mind her knowing the diagnosis. She knows what she has and, the details of the treatment, the doctors have been talking to her about it. I don’t ask her to understand very difficult things but I would want her to know what she has to do to get better and acknowledge that she is ill.	I think he wouldn’t understand even if he were told the diagnosis. I think he will understand by telling him there is a bad swelling. (…) Really, it is a surprise that he doesn’t even ask. I wonder why he doesn’t ask (…) I wonder how much he could understand. If he were in the fifth or sixth grade in primary school he might listen and understand. If I explain it to him now I don’t think he will understand.
Mother of Ally, 11.3 years	Mother of Ken, 11.7 years
They asked us ‘what would you like to do with your child?’ The doctor said that it is the child who is sick, and she is a fifth grader (9–10 years old) now. They waited for two days and we thought that she will be able to take it in. I didn’t have the courage to keep lying to her and if she starts asking questions I thought it will be a problem when I won’t be able to answer. So we asked the doctor to inform her, she was informed in front of three of us, me, my husband and the doctor.	His dad says that it’s still okay (not to tell him). But I think he is vaguely aware, a little aware about it sometimes. It’s the most difficult thing. If he were a little older, I’m thinking, I might tell him. But when I talk to him I don’t want him to become depressed. I’m thinking whether it’s okay to carry on like this. He doesn’t say anything. He doesn’t ask anything, so I don’t say anything either. ‘Oh, come on and ask me’ then I might answer him.

All parents whose children were 14 years or older perceived the children as old enough to understand and deal with the diagnosis.

What should the child know about the illness?

There was a group of parents who wanted their children to know as much as possible: a second group would prefer that their children had partial information regarding the diagnosis and the treatment: a third group thought that they should have information on how to look after themselves but no information about the diagnosis. Finally, some parents thought that the children should just have positive information about the illness

As much as possible about the diagnosis and the treatment Some parents mentioned that they would like to offer full disclosure. Their main reasons included: the child’s need to know about the illness in order to adhere to necessary precautions; the difficulty of lying and keeping the diagnosis hidden from the child; better mutual support between the parents and the child and better coping as a consequence. These are illustrated in the following extract:

Mother of Ethan, 8.5 years old, informed

I think he should know everything possible. I think it’s better than hiding it. (…) It will be easier to convince him if he knows. (…) I will explain everything I can and I want him to understand as much as possible about what his illness is like. I will tell him that it might be life-threatening but we will fight it together. He needs to know as well because I think it will be difficult for us parents to see it through on our own.

Giving partial information about the illness Some parents mentioned that children should have the treatment explained to them but the diagnosis should not be disclosed. Among these were three parents who had disclosed the diagnosis and still thought that information about the treatment would have sufficed. These parents believed that what the children learn about their illness through their own experience is sufficient for them.

Mother of Michelle, 6.8 years old, not-informed

I don’t teach her but she learns on her own. I haven’t told her about the bone marrow tests or the lumbar puncture but she learned it from somewhere. For some reason after four months she knows all of this. The first time we came, when I said your treatment is going to start, she asked ‘what’s a treatment?’ She learns on her own and I think this amount of information is just good for her, rather than telling her more.

Information about precautions is sufficient Some parents mentioned that children should know how to look after themselves to improve and maintain their health. As illustrated in the following extract, some parents believed that their children were too young to understand their diagnosis but they needed to know that they must wash their hands and gargle, and this is enough information.

Mother of Meg, 9.5 years old, not-informed

It’s the transplant, it is her own stem cell transplant, it’s not from a donor, so I know I shouldn’t be so worried about it. But she could easily catch a virus, I want her to wash her hands and gargle properly so she doesn’t get any virus.

Positive information about the illness There were parents who mentioned that they wanted their children to know positive information and that their illness is curable.

Ted, 11.5 years old, not-informed

I want him to think that he will get better. The doctors said that it will take two terms until he is completely cured. So when I heard that, I thought that I don’t have to worry that much (…). He is still small, it doesn’t matter if he doesn’t know. I don’t want to frighten him.

Ted’s mother does not want him to be frightened. Thus it was important that the doctors tell the child that it is a curable disease and avoid the negative representations of the illness.

Conclusions and discussion

In line with previous work, parents’ disclosure of the diagnosis was influenced by their own perception of cancer, their children’s age and the parents’ beliefs about the importance of open communication. Japanese parents revealed very negative perceptions of cancer, associating cancer with death, something to hide from others. ‘Cancer equals death’ is a powerful metaphor (Sontag, 1989) that can influence whether one discloses the diagnosis to one’s child.

Parents were afraid and uncertain as to how their children would react to the information and whether they would be able to continue coping with the illness. Parents of not-informed children wanted their children to receive only partial information about their illness, which excluded the words ‘cancer’ or ‘leukaemia’. They wished their children to be given positive information about the illness, that it could be cured and not that it is life-threatening. These parents had serious concerns about what would happen if their children found out from other sources. There is always a possibility that information would be obtained from others in the ward or by making a connection between their experience and something seen on television.

There were parents who felt that the diagnosis should be withheld unless the child asked about it. Consistently with the findings of Clarke, Sheppard and Eiser (2008), these parents were worried about why the child had not brought up the issue: the absence of questions might indicate that the child already knew what the diagnosis was.

Parents who had opted for non-disclosure seemed to be more anxious about the parent-child relationships, and how non-disclosure might affect their children’s trust in them. In contrast, parents who had informed their children of the diagnosis seemed to be more positive about their relationships with their children. They reported more open communication about the illness and that it helped them and their children to cope and interact with the professionals working with the children. They noted that disclosure prevents the children from the shock of hearing about their illness unexpectedly and perhaps receiving inaccurate information, a concern that was present in the interviews with parents who had not disclosed the diagnosis.

Parents considered their children’s development and its relation to understanding the diagnosis. Goodnow and Collins (1990) argue that parents have an internal representation of development, which affects their perception of their children’s ability to understand death and the seriousness of the illness. Our results are in line with Goodnow and Collins’ hypothesis. Parents of 6–9 year olds generally believed that their children were too young to understand a complex illness such as cancer. Some parents reported that their children did not perceive cancer as frightening and were coping well with it. However, parents worried about how the children would react to their diagnosis when they came to understand its seriousness.

Parents of children aged 10–13 years found it especially difficult to disclose the diagnosis, because their children were perceived as old enough to understand the seriousness of the illness but not to deal with such complex information. Some parents feared that the diagnosis might be threatening and this would make their children unable to cope with the treatment. Parents of children aged 14 years or older reported that their children understood the diagnosis and believed that this was important in order for them to take responsibility in managing their own health.

The review of parents’ views and concerns presented in this paper focused on what the parents expressed in the interviews, i.e. their reactions to the diagnosis, the difficulty of dealing with their own and their children’s fears at the same time, and their representations about what their children might understand and how they might be affected by it. These concerns can be more openly expressed in a culture where parents participate in the decision regarding disclosure of the diagnosis: they are less apparent in a culture where it is taken for granted that diagnosis will be disclosed. However, even when it is taken for granted that the diagnosis will be disclosed, parents still have to consider whether full disclosure is the best option for their children, as some children may not want to know everything. Children’s rejection of information was not reported by the sample of Japanese parents interviewed for this study but it is reported by Gerstenberger (2011), a US mother who wrote extensively about how she and her daughter dealt with the cancer diagnosis: the daughter did not wish to participate in a full disclosure process and would ask the parents and doctors to leave the room if they were going to discuss her illness. Thus, disclosure of the diagnosis is not the same as full disclosure and further studies on the different approaches to disclosure as well as the paediatric patients’ own reactions would make an important contribution to the literature.

Limitation and implications

We have three different concerns regarding the possibility of arriving at general conclusions from the findings from this study and extending these to applications. First, parents were invited and asked for their consent by a doctor or nurse who considered them eligible for participation. This method of recruitment could result in a selection bias: e.g. a higher proportion of parents who had disclosed the diagnosis may have agreed to participate than the proportion of parents who had not disclosed the diagnosis. We have no information on refusal rates. There is also the possibility that parents whose children were in a more vulnerable position at the time were not invited or refused to participate. If this bias is present, it is possible that our study under-represents the stress experienced by parents with respect to the decision whether to disclose the diagnosis. Although some parents were openly distressed during the interview and some sought this opportunity to vent their feelings, parents who were at a more difficult phase of the treatment might have expressed other sorts of reaction not captured here.

Our second concern was the difficulty of including fathers. Only two fathers were interviewed: they were the main caregivers at that time. If we had had the opportunity to explore father-child as well as mother-child relationships, a different picture of the disclosure process might have emerged. In Japan fathers are less involved in childcare compared to Western countries due to longer working hours, lack of family friendly policy from employers and traditional gender ideology about child care roles (Ishii-Kuntz, 2008; Ishii-Kuntz, Makino, Kato, & Tsuchiya, 2004). Especially, the fathers’ work commitments and the distances from their homes to the hospitals rendered the inclusion of fathers impossible. This is often the case in the literature about the adaptation of chronically ill children (see, for example, the meta-analysis by Lavigne & Faier-Routman, 1992) but one does wonder whether this picture would not have changed with the inclusion of fathers.

Finally, retrospective interviews can provide useful information but they must be considered with caution: recall bias and selectivity of information are an inevitable concern, particularly considering that the time of diagnosis is accompanied by great stress and anxiety. However, it can be argued that what is recalled is what was most powerful in the parents’ experiences.

Two implications for research and practice are briefly pointed out here. First, parents’ distress during the time of diagnosis and its influence on the disclosure process suggest the need to investigate whether early interventions to promote parental adjustment could facilitate this process for both parents and children. Japanese paediatricians surveyed by Kaneko and Matushita (1995) included in their reasons for not disclosing the diagnosis of cancer to their patients the lack of support systems for parents and children. The findings in this study reinforce the need for these services, which could include conveying information to parents about other parents’ reactions in this situation as well as the involvement of personnel with experience in breaking bad news to children. Parents can be very appreciative of a division of work according to which the medical staff conveys the bad news and they themselves take on the job of supporting their children (see, for example, Gerstenberger, 2011). Second, parents seem to hold an implicit developmental timetable that indicates to them what children can grasp from this experience. Those who believed that their children could not understand the diagnosis because of their age, and decided against disclosure, were later very distressed about the consequences of the children finding out from others. Recent studies with parents (Clarke et al., 2005; Eiser et al., 1994; Young et al., 2005) have shown that sharing information is related to trust between the parents, their children and the medical staff. It would be helpful for parents to discuss factual information about the diagnosis and the treatment and also to learn about the positive and negative reactions that other parents have reported regarding disclosure or non-disclosure of the diagnosis to their children. It may be important for parents to realise also that not sharing information with their children may affect their relationship with medical staff, as it may be difficult to explain and carry out medical procedures when the children do not know their diagnosis. Today’s survival rates mean that, in the long run, parents who opt for non-disclosure of the diagnosis could face increasing anxiety about their children finding out and their need to know what has happened to them. Further research could investigate whether helping parents to reflect on these issues would turn out to be one more source of distress or would help them make a decision regarding disclosure with which they would ultimately feel more comfortable.

Footnotes

Appendix

Appendix 1.

Interview questions used as a starting point for examining parents’ perception of giving information to their child.

1	Before diagnosis (questions used as a warm-up)
	1.1	When did you first notice that your child was unwell?
	1.2	Did you take the child to the hospital immediately?
	1.3	Did you consult anyone else?
2	Diagnosis
	2.1	What explanations did you have from the doctor?
	2.2	Were you there with your husband/wife?
	2.3	How did [the child’s name] react during this period?
	2.4	What did you tell [the child’s name] was the reason that he/she has to go to the hospital?
	2.5	Did [the child’s name] understand the situation he/she was in?
3	Treatment
	3.1	How is [the child’s name] coping with the treatment?
	3.2	Does [the child’s name] find the treatment sick/ painful?
4	What the parents feel about giving information to the child
	4.1	What do you feel your child should know about the illness?
	4.2	What do you think children are able to understand about the illness?
	4.3	Who do you feel would be the most suitable person to inform a child about his/her illness?
	4.4	Do you feel that coping with the illness is related to whether the child is informed about the illness?

Acknowledgements

The authors are extremely grateful to the parents who generously shared their views, and to Ursula Pretzlik for her supervision, Teryuki Hongo, Seiji Kojima, Masahiro Hirayama, Takahiro Hirota, Takaharu Matsuyama and Junichi Mimaya for their support, which made this study possible.

Funding

The authors are grateful to the Itochu Foundation for the funding which supported this study during the initial two years.

Author biographies

Akiko Watanabe completed her PhD in Psychology at Oxford Brookes University and worked as a research psychologist at University of Birmingham, Birmingham Children’s Hospital NHS Foundation Trust, and University Hospital Birmingham NHS Foundation Trust. She has a special interest in the quality of life of young people with chronic illness. She has been working on a project aimed to improve services for adolescents and young adults with chronic illness which focus on transition from paediatric to adult services.

Terezinha Nunes is Professor of Educational Psychology in the Department of Education, University of Oxford, and a Fellow of Harris Manchester College. She trained as a clinical psychologist in Brazil, in the Federal University of Minas Gerais, and later obtained a PhD in Developmental Psychology at the Graduate School and University Center, City University of New York.

Guida de Abreu is Professor of Psychology at Oxford Brookes University, and Director of the Doctoral Training Programme - Children and Young People: Psychological, Educational and Health Perspectives. Her research explores the impact of socio-cultural contexts on child and adolescent development. Her empirical work includes studies with young carers, children with chronic illnesses, immigrant and minority students, and considers the perspectives of teachers and parents.

References

Clarke

S.-A.

Davies

Jenney

Glaser

Eiser

(2005). Parental communication and children’s behaviour following diagnosis of childhood leukaemia. Psycho-Oncology, 14, 274–281.

Clarke

S.-A.

Sheppard

Eiser

(2008). Mothers’ explanation of communicating past health and future risks to survivors of childhood cancer. Clinical Child Psychology and Psychiatry, 13, 157–170.

Eiser

(2004). Children with cancer: the quality of life. New Jersey: Laurence Erlbaum Associates, Inc.

Eiser

Parkyn

Havermans

McNinch

(1994). Parent’s recall on the diagnosis of cancer in their child, Psycho-Oncology, 3, 197–203.

Gatta

Corazziari

Magnani

Peris-Bonet

Roazzi

Stiller

& the EUROCARE Working Group (2003). Childhood cancer survival in Europe. Annals of Oncology, 14, 119–127.

Gersternberger

K. B.

(2011). Because of Katie: a true story. Charlestone, New Carolina: Published privately.

Goodnow

J. J.

Collins

W. A.

(1990). Development according to parents. The nature, sources, and consequences of parents’ ideas. Hillsdale, NJ: Lawrence Erlbaum.

Kaneko

Matushita

(1995). Shouni-gan chiryou ni okeru byoumei-kokuchi, informed consent, supportive care no genjo [Report on informing the name of cancer, informed consent and supportive care in treatment on pediatric cancer]. Journal of Japan Pediatric Society, 99, 534–539.

Ishii-Kuntz

(2008). Sharing of housework and childcare in contemporary Japan. Expert Group Meeting on ‘Equal sharing of responsibilities between women and men, including care-giving in the context of HIV/AIDS.’ United Nations. Retrieved from http://www.un.org/womenwatch/daw/egm/equalsharing/Final%20report%20EGM%2010%20Feb.pdf (accessed on 10 December 2012)

10.

Ishii-Kuntz

Makino

Kato

Tsuchiya

(2004). Japanese fathers of preschoolers and their involvement in child care. Journal of Marriage and Family, 66, 779–791.

11.

Lavigne

J. V.

Faier-Routman

(1992). Psychological adjustment to pediatric physical disorders: a meta-analytic review. Journal of Pediatric Psychology, 17, 133–157.

12.

Parsons

S. K.

Saiki-Craighill

Mayer

D. K.

Sullivan

A. M.

Jeruss

Terrin

… Block

(2007). Telling children and adolescents about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-Oncology, 16, 60–68.

13.

Pretzlik

(1997). Children coping with a serious illness: a study exploring coping and distress in children with leukaemia or aplastic anaemia. Amsterdam, Netherlands: SCO-Kohnstamm Instituut.

14.

Seo

Tamura

Shijo

Morioka

Ikegame

Hirasako

(2000). Telling the diagnosis to cancer patients in Japan: attitude and perception of patients, physicians and nurses. Palliative Medicine, 14, 105–110.

15.

Slavin

L. A.

O’Malley

J. E.

Koocher

G. P.

Foster

D. J.

(1982). Communication of the cancer diagnosis to pediatric patients: impact on long-term adjustment. American Journal of Psychiatry, 139, 179–183.

16.

Sontag

(1989). Aids and its metaphor. London, UK: Penguin Press.

17.

Tanigawa

Inada

Komamatu

Mibu

Saitou

(2000). Shouni-gan no kodomono total care to gakkou kyouiku [Total care and school education of children with cancer]. Kyoto, Japan: Nakanishiya.

18.

United Nations High Commissioner for Human Rights. (1989). Convention on the rights of children. Retrieved from http://www2.ohchr.org/english/law/crc.htm

19.

Young

Dixon-Wood

Windridge

K. C.

Heney

(2003). Managing communication with children who have a potentially life threatening chronic illness: qualitative study of patients and parents. British Medical Journal, 8 February, 305–310.

20.

Watanabe

(2007). The effect of the social context on children’s stress and coping with cancer. Unpublished PhD thesis. Oxford Brookes University, Oxford, UK.

21.

World Medical Association. (1981). WMA declaration on the rights of the patient. Retrieved from http://www.wma.net/en/30publications/10policies/l4/index.html