Cancer incidence among young and middle-aged people has increased worldwide,1 and it is this group that is likely to have minor children at home. At least 18% of cancer patients in the United States have minor children,2 and it has been reported that approximately one-third of those with breast cancer have minor children.3 In Norway, approximately 4% of children aged 0 to 25 years have or have had parents diagnosed with cancer, which corresponds to a population prevalence of 1.4%.4 Data about percentage of cancer patients with minor children are not available in China.
Cancer patients who have minor children undertake the double burden of the disease and its treatments and the responsibilities of taking care of their dependent children.5 They may experience heightened distress and psychosocial problems, compared with cancer survivors without children or with adult children.5,6 They may experience worries about not being able to perform usual parenting activities and the strain of having multiple roles while ill.6
It is important not to ignore the negative impact of parental cancer on children.7 A majority of studies based mostly on trauma theory have shown a significant direct association between parental cancer and psychosocial problems of their children.8,9 Children who have parents with a life-threatening illness such as advanced cancer can manifest significant distress.10 Common problems of children with parents diagnosed with cancer may include regressive behavior, anxiety, and difficulties in school and other social settings.9
Some studies have also shown that open communication between parent and child may help reduce the anxiety experienced by children11 and that the quality of communication and whether children have been told about the cancer illness are associated with anxiety in children.11,12 Children who received communication about their parents’ cancer reported less anxiety than those who did not.12 However, some parents described a tension in wanting the child to feel included in communication about the parental illness, balanced against fears about worrying or frightening the child.6 Some parents attempt to avoid any negative impact on their children by not telling their children the true diagnosis,5 and many mothers chose not to talk about death or the prognosis when talking about the illness with their children.6
It has been reported that many parents also struggle with what, when, how, and where to tell their minor children about serious illness and the future.6 Lewis7 concluded that “Families do not typically know, understand, interact with, or support children coping with the mother’s breast cancer.” Few parents receive information or support about ways to help their children cope, compounding their distress and leading to parental avoidance of discussion about difficult issues.13,14
The communication that occurs between parents and their children deserves special attention, although little has been reported in the Chinese literature. Therefore, this is a study to explore the perspectives of Chinese adult cancer patients with minor children about making disclosures of cancer diagnosis to their children.
A qualitative descriptive research design was used in this study to gain an understanding of how Chinese cancer patients with minor children perceived their experiences related to disclosing cancer diagnosis to their children.15 This design was chosen as a naturalistic inquiry that attempts to study the phenomenon in its natural state to the extent that it is possible and to gain in-depth knowledge and description about the parental experience of disclosure of a cancer diagnosis using semistructured interviews.
Purposive sampling was used to recruit participants at a cancer hospital in a city in the north of mainland China, from January to March 2017. This hospital has more than 2000 beds and provides surgery, chemotherapy, radiotherapy, biotherapy, and targeted therapy. Approximately 3000 medical professionals, including 1300 registered nurses, work at this setting that also has 46 medical and technology departments and 12 research departments. Annually, 1.12 million outpatients, 86 000 inpatients, and 28 000 surgery cancer patients receive care at this setting. Eligibility criteria for this study were (a) aged between 22 and 60 years, (b) first diagnosed with malignant cancer by surgical pathology, (c) informed of one’s diagnosis and condition, (d) had at least 1 child aged from 6 to 18 years, (e) cognitively alert and able to speak Chinese, and (f) willing to participate.
This study was approved by the research ethics committee of Tianjin Medical University Cancer Institute and Hospital. Confidentiality was guaranteed by using letters instead of a real name. Research data were available only to researchers and participants. Informed consent was obtained from all participants, and participation was voluntary. All participants were informed of the right to withdraw as they desired. Research data were kept on a password-protected computer for safekeeping.
Semistructured interviews were developed based on previous literature review and expert consultation and field tested with 2 patients to ensure that all the questions were theme related, understandable, and answerable. The final, semistructured interview questions after modification are shown in Table 1.
A nurse researcher with experienced interview skills was responsible for all 18 face-to-face interviews. She explained the study purpose and method in detail and obtained written informed consent from all the participants. She also explained that participation would not influence patients’ ongoing medical care and detailed their rights as research participants.
Interview dates and places were prearranged with each participant and conducted in a private and quiet room of each department. Each interview was flexibly guided by an interview schedule and lasted from 20 to 50 minutes, with an average time of 30 minutes. Participants were encouraged to elaborate on their feelings and perceptions regarding disclosure of their cancer diagnosis to their minor children. Certain interview skills, such as probing questions: “Could you say more about it?” were used to clarify participants’ responses and gain more information.
All interviews were audio recorded, and participants’ expressions and mood, as well as the researcher’s feelings, reflections, and interpretations, were all recorded on paper for data analysis. Sample size (n = 18) was determined when no more new themes emerged, confirming data saturation.
Audio recordings were transcribed verbatim by the researcher within 24 hours after each interview. Transcripts were repeatedly reviewed while listening to the recorded interview and reviewing notes on participants’ mood, tone, and postures during the interviews. Data analysis was concurrent with data collection. Qualitative thematic analysis starting with open coding was used to identify significant statements and phrases following Colaizzi’s approach. Two researchers read and reread the printed transcripts and coded independently and identified themes separately. Then they came together and discussed differences in coding and the generation of themes and agreed on the final themes. Categories were identified by connections between codes, and connections between categories were linked to themes, which were tabulated with illustrative quotations. The constant comparative approach was used to determine saturation. Data were saturated after 15 interviews, but 3 more interviews were conducted to ensure full data saturation. After the interview, participants who agreed to be contacted were telephoned to verify themes derived from their interviews. All participants agreed with the themes extracted from the interviews.
Ultimately, 18 patients were recruited, with a mean age of 39 (SD, 5.71) years. Eight patients were diagnosed with breast cancer, 3 patients with lung cancer, and so on. In total, paricipants had 21 children (8 boys and 13 girls), with a mean age of 11.71 (SD, 3.99) years. Four participants disclosed their cancer diagnosis to their minor children, whereas 14 did not. Detailed demographic data of all participants and their children are provided in Table 2.
Only 4 participants told their children about their cancer diagnosis, whereas 13 participants told their children that they were ill. One participant with breast cancer kept her condition secret from her child (a boy, 10 years old). For participants who disclosed their illness partially or totally, 6 children (from 5 participants) were told at the time of diagnosis, and the others were told during the treatment; 4 children (from 3 participants) were told when they asked after they detected something unusual, and 5 of them (from 4 participants) got the information from other relatives; the other 11 participants initially shared the information with children. Considerable variation existed in the extent to which children were told about the nature and possible consequences of the illness.
Six main themes emerged from the data: (a) inappropriate to disclose the true diagnosis to children, (b) appropriate to disclose the true diagnosis to children, (c) communication content between cancer patients and their children in regard to cancer, (d) attitude on ways of disclosing cancer diagnosis to children, (e) reflections on parenting style, and (f) unmet needs of information and support. Each theme and its subthemes (Table 3) are described below with some excerpts from the participants’ narratives.
Inappropriate to Disclose the True Diagnosis to Children
Only 1 participant totally concealed the diagnosis to her son, and 13 participants partially disclosed the diagnosis by telling their children they were just ill but not revealing the diagnosis. These participants considered that it was inappropriate to disclose the true diagnosis of cancer to their children. Parents shared their perspectives of reluctance to tell the cancer diagnosis to their children, which were summarized and classified into 5 main subthemes.
CHILDREN BEING TOO YOUNG TO UNDERSTAND
The most common reason for nondisclosure was that some participants thought their children were too young to understand the true cancer diagnosis, the meaning of cancer, and its link with death. Four participants said that there was no need to inform children of their cancer, considering that it is beyond their understanding, and furthermore children could do nothing to help.
I feel that there is no need to tell him [about] my disease as he is too young to understand. He is only in grade 2 and very happy to live his life every day. Telling him [about] my disease definitely makes him feel sad, although he doesn’t really understand what cancer is and he could do nothing to help. (Participant A: mother of a boy aged 8)
Despite her son being 8 years of age, this parent felt this was too young for him to understand what was going on. However, children even at 8 years may have sufficient understanding to work out that something was very wrong with a parent.
WORRYING THAT THE DISCLOSURE MAY CAUSE ADVERSE EFFECTS ON CHILDREN
Some participants expressed that they struggled to minimize the influence of their illness on children and wanted to maintain children’s normal childhood.
I am not going to tell my daughters my true diagnosis. They should live a happy childhood. Besides, my elder daughter will take the entrance exams to university next year, so I don’t want to bother her studies with my disease, either. (Participant E: mother of 2 girls aged 9 and 18)
Similar to participant A, participant E did not want to upset her children as she wished for them to have a “happy” childhood that was free from worry about the parental illness and did not want her daughters’ preparation for examinations marred by her illness. This was also the concern of participant F:
I don’t want to let my son know [about] my disease as his final exams of this semester are coming soon, and I was afraid that he would be impacted adversely by my cancer diagnosis, both on mood and study… But I noticed that the scores of his school studies dropped down rapidly from top 10 to top 20 in the ranking list within 20 more days of my treatment.(Participant F: mother of a boy aged 15)
Participants worried that the disclosure of the cancer diagnosis would cause much pressure on children, which was beyond their ability to handle and as a result negatively impact their school studies. However, there is evidence from participant F that despite keeping information from her 15-year-old son, his grades and ranking dropped when his mother was in treatment. Adolescents can identify changes happening in the family, although they are not formally informed about their parents’ cancer diagnosis.
BEING FEARFUL TO FACE THE STRONG EMOTIONAL RESPONSES OF CHILDREN
Some parents feared seeing children’s strong emotional reaction if they informed them of the true diagnosis. Two participants expressed that they were not prepared to tell their children because they were worrying that they themselves could not cope well with children’s emotional responses.
I only said to my child that mum developed a serious disease, and then she cried bitterly after she heard that, so I didn’t dare to mention to her my true diagnosis. (Participant J: mother of a girl aged 12)
The emotional reaction from participant J’s daughter following this communication discouraged her from mentioning the serious illness again. The mother felt unable to cope at that time with her daughter’s extreme emotional distress, and perhaps this also contributed to the emotional distress and feelings of loss in the mother.
NOT KNOWING METHODS TO DISCLOSE BAD NEWS TO CHILDREN
Parents who either disclosed or did not disclose the cancer diagnosis to children expressed that they did not know what or how to inform their children about their illness. Among those who already told their children, worries and uncertainties about whether their ways of disclosure were suitable were common. Lacking knowledge on appropriate skills of telling a cancer diagnosis to children was an important reason for concealing bad news.
I don’t know how to say about my disease to my child, and I don’t know whether the prognosis is optimistic to live for another decade more or less without any problems, or it is easy to reoccur. I just wonder how and what I should say to my child. I am really afraid that if I describe about my disease critically it would cause her psychological burden and impact adversely on her school studies. (Participant Q: mother of a girl aged 12)
Another participant did not know how to start the conversation with the child:
Honestly, I dared not to face or talk to her. I didn’t know how to start the conversation, it’s really hard. And she never detected or asked about this, so there is no need. (Participant J: mother of a girl aged 12)
Some participants reported that it’s hard for them to talk about disease with children, because of lack of communication knowledge and skills. They also worried inappropriate communication would bring negative influence to children. So, some of them chose to avoid talking about disease or to hold back real diagnosis. Even those parents who had already disclosed their disease to their children would worry whether their informing method is appropriate or not.
Appropriate to Disclose the True Diagnosis to Children
Seventeen participants (94.44%) wanted to inform their children about their illness; 13 parents (72.22%) disclosed some information related to the illness to their children, and 4 parents (22.22%) totally informed their children about the diagnosis. Participants who had already disclosed the diagnosis to children were asked to describe reasons for this disclosure, as described below.
TRUE DIAGNOSIS COULDN’T BE CONCEALED
The participants knew that they had to tell their children the truth when they could not pretend or hide the illness. This occurred when the parent was away from home for hospitalizations, which resulted in a changed body image, such as mastectomy and alopecia.
I didn’t want to tell my son about my cancer diagnosis at the beginning, because I wouldn’t like to trigger any negative influence on him. However, after several cycles of chemotherapy, he gradually realized what kind of disease I developed. I realized that concealing was impossible, so we broke the news slowly. (Participant M: mother of a boy aged 15)
The changes associated with cancer manifestations have been learned by children from other cancer patients they met before or from television, the internet, or other media sources.
One of our neighbors suffered from breast cancer several years ago, and [my daughter] knew this. She searched it on the internet by the phone when I began to suffer with alopecia. One day she asked me if I had chemotherapy. So I told her the truth. (Participant E: mother of 2 girls aged 9 and 18).
Some participants reported that they had to disclose true diagnosis as concealing it from children became impossible. Telling the truth became a better choice for these parents when children began to doubt. Some participants who still kept the truth considered this circumstance as the time to disclose.
CHILDREN BEING PERCEIVED AS TOUGH ENOUGH TO UNDERSTAND THE BAD NEWS
Two participants (participants C and M, with children who were both >15 years old) considered that children had the capacity to understand cancer, and they anticipated that their children were tough enough to bear the strike of parents’ cancer diagnosis.
Participant F, mother of a boy aged 15 years, described that her son had previous experiences with cancer of their relatives who were still healthy and alive. Participant C described telling his 2 teenagers immediately after he got his diagnosis:
I told my 2 children immediately when I got the diagnosis, as they are grown-up ones. I am confident that they are able to undertake a strike of bad news and can understand and accept my cancer diagnosis; therefore, I had told them. If they were in teens, perhaps I won’t do like this. (Participant C: father of a boy aged 16 and a girl aged 18)
Parents in this study were cautious about whether to disclose or not. Most participants would evaluate their children’s ability to face their parents’ cancer diagnosis. Those children who were evaluated able to undertake the strike of bad news were more probably to have been talked about parents’ disease. Usually, older children are considered better equipped than young children, such as children of participants F and C. Similar experiences of children are another determinant influencing parents’ decision. Actually, children are stronger than parents imagine.
TO AVOID CHILDREN SUSPECTING, WORRYING, AND BEING OVERWHELMED
Some participants wanted to talk openly with their children about their cancer because they would not like their children to be suspicious, which causes uncertainty and worry. Other reasons for disclosing the diagnosis to children were to promote communication by informing of the truth and protecting children from getting the information unexpectedly. Participants diagnosed with advanced cancer worried about the blow of their sudden death to children, so they thought it better to disclose some information to allow children a process of acceptance.
It’s hard to make a communication between us. People are usually curious about what are concealed from them, so I’d tell my child about my disease rather than making him speculate. (Participant D: father of a girl aged 7)
I used to be concerned about her mood and emotion; she is sensitive and curious about my leaving home for so many days. It’s better to tell her than to let her guess and worry. (Participant O: mother of a girl aged 9)
I told my children of my lung cancer because it was very late and had metastasized to my brain (sobbing). It’s really a sudden blow if they do not get to know my disease until my death. I told them, to allow them sometime to accept…” (Participant C: father of a boy aged 16 and a girl age 18)
The parents above were all suffering from advanced and metastatic cancer. In particular, they did not want the children having further distress by worrying about parental absence from the home during treatment. In the later stages of cancer, parents with advanced diseases do not want to hide their cancer diagnosis from children as it is impossible for them to pretend to be healthy, and they really want to prepare their children to face death, and to reduce the huge impact that losing a parent has on a child.
REGARDING CANCER DIAGNOSIS AS AN OPPORTUNITY FOR CHILDREN TO GROW UP
Some participants considered that a parent’s illness could be an opportunity for children to realize that they were supposed to do as much as they could to support parents, because before they were diagnosed with cancer, their children only receive unconditional love from their parents, and now it was time for their children to return their love to their parents. They believe the Chinese saying, “Filial obedience is a great virtue.” On the other hand, some participants wanted to encourage and cultivate children’s independence and responsibility.
No matter in what way, directly or indirectly, I have to inform my child about my disease so as to let him understand what kind of disease I have been diagnosed and remind him that it is time for him to fulfill his filial piety for his parents (tears). People diagnosed with cancer may disappear from this world before they have much time to realize that. (Participant H: father of a girl aged 6)
Telling the true diagnosis and serious situation may enable children to realize that they have to be independent and can no longer rely on their parents in their daily life. They are supposed to fulfill “filial piety” for their parents by returning the love their parents have dedicated to them and learning to be a person who knows his/her responsibility and how to take care of others, which are the qualities children are supposed to have.
Communication Content Between Cancer Patients and Their Children in Regard to Cancer
Their intentional nature of the communication content appears to help children understand parents’ diseases, realize the causes of why things have changed in the family, indicate the possible prognosis of parents’ diseases, encourage children to live their lives independently, and help children understand the meaning of life and death.
AVOIDING MENTIONING “CANCER,” ONLY “BEING ILL”
Thirteen participants partially disclosed the cancer diagnosis to children by choosing some information related to their cancer, which they thought was enough for children to notice their disease, including the main treatment or only being ill. Most of these Chinese parents avoided using the word “cancer.”
I came to an agreement with his father to avoid mentioning cancer before him; I don’t want him to know that his mother got a cancer and am also afraid of being asked about it by him (…). (Participant G: mother of a boy aged 6)
Cancer tends to be thought of as a death sentence in China,16 and in this sense, it could be a stigmatizing diagnosis and therefore the word “cancer” was avoided. Some participants had worries about being labeled as someone with cancer in front of children. So they believed that the word “cancer” should be avoided.
INFORMATION AND PROGNOSIS OF CANCER
Only 4 participants disclosed information and the prognosis of cancer. However, disclosure of information and prognosis of cancer may have some relationships with the type and stage of cancer. For example, patients with cancer who have a far better prognosis such as breast cancer would choose to tell children about the diagnosis.
I need to tell my child what disease I have been diagnosed—cancer, also treatments, but not the possible prognosis. I may stay alive for a long time, or my disease may reoccur before long. It would be too late to let her know my disease if my disease reaches critical condition. Telling her my true diagnosis at the beginning may be good for her to mentally and psychologically prepare herself. (Participant J: mother of a girl aged 12)
Some participants chose to talk about cancer information and prognosis with children, because they had a good prognosis. It could be also due to a poor prognosis and limited survival period. For both choices, whether the prognosis was good or not, they identified the benefits for children knowing about cancer diagnosis from a psychological point of view.
Many parents intentionally gave children more encouragement than usual, whether disclosing the cancer diagnosis or not. Children were often encouraged to be more strong and independent. Some participants mentioned that they encouraged children to be obedient, optimistic, and independent while talking about their diseases.
I have tried to help my child learn to live independently and learn how to live her own life without mum. During the hospitalization, we talked by phone everyday; I would encourage her to be obedient, to do things by herself, to be friendly with classmates… (Participant J: mother of a girl aged 12)
MEANING OF LIFE AND DEATH
Some participants considered how to guide their children to develop a correct attitude toward life and death. Some of them tried to interpret the meaning of life and death from the perspectives of religion. They believed in an afterlife and draw on a religious perspective/philosophy to support themselves and children for the forthcoming death, with the hopeful message that the spirit is immortal.
I intended to include some philosophy of life into our conversations, no matter the philosophy opinions from Chinese Buddhism or Christian, with a hope of helping my son understand that life is eternal and spirit will be immortal. I told him that we will meet again in heaven or somewhere else after we leave this world. Telling my son of these is also telling myself. My behaviors in responding to life and death is the best education to him. (Participant M: mother of a boy aged 15)
Some other participants reported that they bought some life-meaning education books to read with children, or they encouraged children to watch movies on a similar theme.
Attitude on Ways of Disclosing Cancer Diagnosis to Children
Some participants disclosed their cancer diagnosis directly to their children as they felt that there was no other way to conceal it.
I would directly let my child know my disease rather than letting her speculate or think about it over and over again. (Participant R: mother of a girl aged 12)
Most participants thought they should disclose the diagnosis to their children little by little without causing them to feel overwhelmed and upset. Indeed, most participants interviewed did like this. Through slowly revealing the bad news, they hoped children would have more psychological preparation and could be more likely to accept their parent’s disease.
I told my son about my disease a little at a time, and gradually he gets used to it and became not that sensitive. Now when we talk about my disease, she is not as upset as he was when I first mentioned a little about cancer to him. (Participant M: mother of a girl aged 15)
My son is too young to accept that his mum has developed a fatal illness. He is afraid of death, and he has experienced a close relative’s death, which influenced him a lot. I would tell him about my disease little by little and gradually let him know during the period of my life remaining in this world (choking). (Participant G: mother of a boy aged 6)
However, a few participants who had told their children their cancer diagnosis directly rethought their actions as inappropriate and showed regrets. They reported that they should have told their children about their diagnosis step by step, to avoid a sudden strike to children.
I’m thinking that whether it is too sudden to tell them the truth directly, (…) I felt some regret since I should have considered more. (Participant C: father of a boy aged 16 and a girl aged 18)
Reflections on Parenting Style
The experience of cancer made some parents rethink their parenting style, such as focusing too much on children’s education and spending less time with children, which consequently led to hard communication between parents and children.
After being diagnosed with cancer, I cherish time spent with my daughter, try to spend more time with her, thinking about how to get along well with her, and how to educate her instead of focusing on study alone. I want her to become more independent and strong, even without me (sobbing). (Participant I: mother of a girl aged 10)
Parents identified a number of ways of positively influencing their children and broadening out their relationships by spending more time with them. Parents were observed to be very emotional during the interview, for example, chocking up and sobbing especially when they reflected on the possibility of premature death, and this shows how difficult it is for parents to communicate such news to their children.
Unmet Needs of Information and Support
Participants’ unmet needs on cancer disclosure to children were mainly information and support needs. First, parents claimed that they were in need of skills on communication with children; second, they needed more information about their cancer and cancer-related information, so that they could be able to explain to their children clearly and make their children understand and be fully prepared to face what will happen ahead of time. Moreover, they would prefer that healthcare providers give children a science education on cancer and coping, by lectures or other forms of communication.
It would be very nice if there is guidance for me and my child, since myself is not very clear about my condition. And we need some suggestions on how to talk with children about our diagnosis. It would be helpful for me and other patients, also our children (…). (Participant R: mother of a girl aged 6)
Communication on parents’ cancer diagnosis with children has seldom been discussed domestically in mainland China, both from perspectives of cancer parents and medical staffs. The most important outcome of this qualitative study is the identification that most Chinese parents diagnosed with cancer being interviewed tend not to disclose the real diagnosis to children. Reasons for not telling revealed in the current study were mostly consistent with previous foreign studies: protecting children, considering cancer as beyond children’s understanding, being fearful to face children’s emotions, and lacking skills to disclose.6,17 However, culture differences existed. Based on Chinese tradition, the family events were generally not allowed to be shared with children as the traditional belief deemed that children were too young to understand something bigger (important).
Since last century, “one child policy” has been carried out in China for more than 3 decades; during those years, a family was allowed to have only 1 child.18 Therefore, all attention of the family has focused on the only 1 child, and the family would not like their children to have even a slight adverse impact in their lives. Under this pattern of parenting, many children have been overprotected; therefore, the participants feared that cancer diagnosis may bring their children adverse effects both mentally and academically. Thus, when diagnosed as having cancer, the Chinese parents worry a lot about this or his/her children’s school study and daily life and choose not to disclose the true cancer diagnosis to children for protection and to avoid adverse effects on academic performance.
Moreover, the word “death” is avoided in many Chinese people’s communication. This could be attributed to Chinese traditional concept of “death,” in which death was conservatively regarded as infelicity and taboo.19 The Chinese cancer parents are reluctant to give children negative information relevant with death or cancer. That is why the participants would not include something in regard to death when they talk about their diseases with their children. Also, some participants mentioned the reason for providing children with partial information was to avoid facing questions about cancer and death.
Although cancer has become common all over the world, which has also been defined as chronic disease,20 understanding cancer among the public is still inadequate. Some participants worried that their children may feel isolated if the cancer diagnosis is disclosed to their neighbors and classmates in school, as some people still consider cancer as a dirty and communicable disease,21 which calls for further efforts on popular science propaganda about cancer.
There was considerable consistency in the reasons given for either disclosing or not disclosing the diagnosis with their children; both choices were to protect their children. Some parents chose to tell their children the truth with the consideration that true diagnosis was hard to be concealed. Actually, it is hard for the participants to keep children from knowing their cancer diagnosis for long. The grown-up children identified their parents’ diagnosis from the information searched on the internet or from people’s talking, even from the persons who have been diagnosed with cancer around them.
In addition, children were perceived bearable to undertake strikes of bad news from some participants’ perspectives. Evidence suggested that developmentally 12- to 17-year-olds begin to have an increased understanding and comprehension of the enduring consequences of loss.10 Thus, Christ10 suggested that from this age children need detailed information about illness (and prognosis), as well as how their future plans will be affected. Therefore, cancer parents’ views of children and their maturity would influence their decision. Moreover, some participants thought that early information could avoid children suspecting, worrying, and being overwhelmed, and they regarded cancer diagnosis as an opportunity for children to grow up. This was consistent with the growing literature demonstrating depressive and anxiety symptoms in children with a parent with a serious illness diagnosis, but concealed with the truth.22 A qualitative study of children of parents with cancer discovered that children were eager to know and communicate parents’ disease progression in time, and they expressed that they could do with some help.23 Studies investigated changes in relationships in families affected by breast cancer and also found that they reported role shifts and increased closeness after disclosure,23,24 whereas parents are generally unsure about outcomes of the cancer and the prognosis and therefore feel unprepared as to what to say to the children. Therefore, information support for cancer parents is needed.
Besides, we found another explanation for diagnosis disclosure—filial piety. In traditional Chinese culture, children have the obligations and responsibilities to take care of their parents when they are old enough, no matter poor or wealthy, healthy or ill.25 This is called “filial piety.” Participants being interviewed anticipated their limited life, and filial piety, which means care from children, would bring them much comfort and support. However, this would depend on the age of children and the type of children.
Parents’ experiences remind us that nurses are supposed to watch the emotional sufferings related to their worrying and concerning their young children. Results from this study also point to the need for psychological support to be offered to the families and especially those children whose parents suffered advanced cancer with a poor prognosis in line with the survivorship initiative. Instructions for parents with cancer should include psychological support to children, such as close communication and encouraging children to socialize with friends, and so on. It is interesting that parents felt they could cope with their own feelings but not the children’s sufficiently well. Perhaps parents were worried about breaking down in front of the children. They talked about wanting specialized, some even mentioned specifically psychological, support for their children, which is also identified by previous studies.6 It may be beneficial if support is offered preventively, rather than reactively. Cancer parents alluded to this when saying that they would have liked this support to be available whether they needed it or not. It may also be helpful to integrate psychological support in the child’s existing relationships and lifestyle. For example, training for school counselors may mean that they could be equipped to deal with these children and families.26 Also, teachers at school, where a lot of support may be given, can also help. Some participants interviewed in this study talked with children’s teachers about their sufferings and sought for supports academically and psychologically. However, the taboo nature of cancer may mean that some parents are unable to share information beyond the close family unit. This finding also further emphasizes the need of attention and support to the cancer family with children by oncology nurses.
There are some limitations present with the study. First, the heterogeneity of the study sample may limit the generalizability of the study results. For example, we recruited individuals with advanced as well as more treatable cancers. Future directions may include attention to attitudes toward disclosure among parents with a more favorable prognosis versus those with advanced and/or terminal diagnoses. Second, the study sample lacked enough representativeness, because single parents were not included, and so on. It is possible that single cancer parent’s lack of spousal support would have different experience on this topic. Further study should take such variables into consideration.
The findings of the study demonstrate that clinical oncology nurses are supposed to pay more attention to this group and encourage the patients to have open communication with their young children by showing how communication between parents and children works and how the children experience their parents’ cancer and their willingness to try their best to help their parents. Nurses should also try to learn to evaluate the needs of the parents in relation to whether they are supposed to inform this cancer diagnosis to their children, how and what to tell their children about their diseases, and how to help these children cope well with the adverse impacts of their parents’ diseases.
Actually, oncology nurses have realized that cancer patients who have minor children do worry about their children in many aspects, especially children’s daily life and their school studies. However, the nurses have never received any training on how to evaluate the problems this group of parents has related to their young children and how to evaluate their deep feelings for uncertainty if they will leave their children. They have never been trained on how to teach the patients to communicate with their children about their diseases and to identify the psychological or physical problems their children may have as well as what resources could be available to be provided for these patients. Thus, the findings also help nursing leadership realize how urgent it is for them to provide training for the oncology nurses to deliver nursing care to cancer parents, in relation to offering to meet this group of parents’ needs and enabling nurses the abilities of evaluating and communicating in such situation.
The findings of the current investigation could be a guide for the clinical oncology nurses to cancer parents’ experiences regarding disclosure of cancer diagnosis to their children in China. While telling and not telling children about disease are both for the purpose of protecting children, cancer parents could make their decision according to their children’s individual condition. However, this research shows that Chinese cancer parents lack skills on telling children about the cancer disease and communicating with children, and they have unmet needs on this. Results of this study also implied that Chinese cancer parents have some cultural-specific considerations, such as concepts of death and filial piety, which is different from studies in Western countries. Furthermore, the problem of this group of patients in relation to their young children has existed for years, but this is an area that has received little attention in China.
Little is known about experiences of children with cancer parents in China and about Chinese oncology nurses’ understandings and perceptions on this topic and also their abilities to provide care and consultation, because cultural diversity does exist. And these would actually provide deep understanding and instructions on designing interventions and taking measures. Therefore, studies investigating Chinese children and oncology nurses’ perspectives and experiences on this topic are needed.