Advances in medical technology in the last 50 years have increased the survival rate of childhood cancers. This applies especially to acute lymphocytic leukemia (ALL), for which the average life expectancy of children diagnosed was 19.3 weeks in the 1950s1 but now has a cure rate of 80%.2 However, leukemias continue to be the most common type of childhood cancer, constituting 26.8% of all cancer cases in children and adolescents (aged 0-19 years) in Hong Kong.3 The incidence is similar in the United States.4 Thus, psychosocial research on childhood cancer remains vital, with the focus of study shifting from preparing the parents for the imminent death of the children to examining the issues concerning diagnosis and treatment of and survival from ALL.5,6
The success of curing pediatric ALL entails a treatment protocol that often extends to 2 to 3 years. Intensive chemotherapy in the first month is required to induce remission, as well as during the consolidation phase and the maintenance phase to ensure continual remission of the disease.7 Although the experience of undergoing through such intensive treatments affects the children and their entire families, many studies investigate only the mothers' experiences. However, even studies that involve a large number of both fathers and mothers tend to report data from the mothers' perspective.8-11 Research into the fathers' concerns of parenting a child with cancer is very rare, and thus, little is known about the mens' own experiences. Because mothers are often the designated caregivers of the children, they are not only accessible but also expected to be reliable informants of their children's lives, making them desirable informants in research studies. Research designs also play a role in promoting sex bias, as studies using questionnaires requesting a parent to participate elicit a response from 89% mothers and 11% fathers.12 Researchers should specifically include fathers when designing their studies; this will ensure the participation of the fathers and will increase understanding of their experiences of having a child diagnosed with cancer. Thus, a combination of scientific sex bias on participation and family dynamics plays a role in the lack of understanding of fathers' experiences with having a child with cancer. The roles that fathers play and their contribution to the life of these children have not been the focus of research studies. As a consequence, fathers have been termed the forgotten caregivers of these children.13 It is not certain whether fathers experience more or less stress than mothers do, but they might have different challenges and experiences because of the role they play in their families.
Research findings suggested that parents with chronically ill children used different coping strategies. Fathers tend to use exclusively problem-focused strategies, whereas their spouses concentrated on the use of emotions to relieve their stress.14,15 This may imply that mothers depend on fathers to obtain information about the child's medical condition. More research is necessary to study the impact of sex differences in relation to parenting a child diagnosed with cancer.
The few studies that focused on fathers concluded that fathers were concerned with the child's current health status and with their future well-being. Their coping strategies included getting information, seeking help, solving problems, and using religious beliefs.15-17 There are also questions relating to the levels of stress experienced by fathers, and this is important to investigate in order to provide a better understanding of sex differences related to parenting a child with cancer. In addition, a lack of understanding of the experiences and coping strategies of fathers with children with ALL often prevents healthcare professionals from giving appropriate support to the fathers. This article reports the experiences of Chinese fathers parenting a child with ALL from a study that investigates the experiences of both parents.
The Study
The purpose of this study was to gain a better understanding of the experiences of Hong Kong Chinese fathers of children with ALL and to explore their needs, coping strategies, and support systems.
Methods
A qualitative approach using a semistructured interview format was used to elicit information about the experiences of fathers of children with ALL. This approach was deemed most appropriate because it offered the fathers a chance to freely express their experiences when their child was first diagnosed with ALL and 1 month after the initiation of treatment of ALL. In-depth interviews produced qualitative data that provide insights into the experiences and opinions of the fathers. The topic of concern was introduced and the author guided the discussion by asking specific questions.18
Sample
Parents with a child recently diagnosed with ALL were recruited with the help of the senior consultant from the pediatric oncological ward of a large teaching hospital in Hong Kong. Inclusion criteria included Hong Kong Chinese parents older than 18 years and whose child was currently being treated for ALL in the hospital and who had Cantonese as their first language. This was to ensure free expression of their experience because all interviews were conducted in Cantonese. Nine sets of parents were recruited, but only 8 fathers agreed to participate in the study. The mean age of the fathers was 38 years. The age of the children ranged from 9 months to 14 years (4 boys and 4 girls), and the number of siblings ranged from 1 to 4 per family. The demographic data of the fathers and the characteristics of the children are shown in Table 1.
Data Collection Methods
Data collection consisted of 2 semistructured interviews with the fathers, with the first conducted 1 month after the child's diagnosis of ALL, and the second, 4 months after the diagnosis. The scheduling of the 2 interviews allowed the fathers time to come to terms with their child's diagnosis, and the second interview took place after the completion of induction and consolidation therapies for ALL. The semistructured interview schedule was generated through comprehensive literature review and based on the researcher's extensive clinical experience. The times of the interviews allowed the fathers to identify changes in their experiences 1 month after their child's diagnosis, with the child's treatment being less intense 4 months after diagnosis. The demographic data were obtained using a demographic sheet that included the father's age, level of education, occupation, marital status, religious affiliation, and monthly income. A genogram and echomap were incorporated into the interview schedule so that the composition of the child's family and the support system of the fathers could easily be visualized. A pilot study was undertaken with 1 father to determine the feasibility and appropriateness of the interview schedule. From the pilot study, no problems with the interview schedule were identified, and all interviews were scheduled in the late evening at the fathers' requests. The interview times varied between 45 minutes and 1 hour for the first interview and 30 minutes for the second interview. Field notes were kept of each interview to complement the transcribed interview data because both sets of data were important to interpreting the experiences of the fathers.
Before carrying out the study, ethical approval was obtained from the ethics committee of the university. The consent form was translated into Chinese to facilitate the understanding of the fathers, and written consent from the fathers was obtained after the purpose and the procedure of the study were reviewed with them. To ensure confidentiality, each father was assigned a code known only to the researcher.
Strategies were used to ensure validity and reliability of the data. All interviews were tape recorded. This ensured the accuracy of the data by avoiding selective filtering of data through the researcher's recall and bias. The use of field notes also helped to facilitate accurate interpretation of the data.19 Validity was enhanced by the careful development of the interview schedule, providing privacy during the interview, and by the process of prolonged engagement with the fathers. To further increase validity, an experienced pediatric nurse who was bilingual and had experience in doing qualitative research was asked to check the accuracy of the translation of 2 transcripts and identified major categories.
Data Analysis
Data analysis used the framework developed by Miles and Huberman20 and included data reduction, data display, and conclusion drawing and verification. The interview schedule provided the focus and context for the analysis. Initial categories were developed from the interview questions, and subcategories were identified from the transcripts. Data displays using a table allowed the researcher to conduct both intracase and cross-case analysis, which enhanced and deepened the understanding and explanation of the emerged categories. This final phase required the researcher to step back and analyze the meaning of the data, cross check data, and verify the conclusions.
Findings and Discussion
Four areas that allowed healthcare professionals a better understanding of the experiences of Chinese fathers with a child with ALL were identified. These areas are (1) fathers' initial reactions to the child's confirmed diagnosis, (2) disclosure of the child's diagnosis to others, (3) social support of the fathers, and (4) effective coping mechanisms of the fathers. Each of these areas will be discussed in the following section.
The Fathers' Initial Reactions to the Child's Confirmed Diagnosis of ALL
When the child's diagnosis of ALL was confirmed, all fathers, regardless of their educational background, were overwhelmed by the suddenness of the diagnosis and the consequences of cancer. They had attributed their child's feeling unwell to common childhood ailments such as stomach flu or cold, but cancer was not on their minds. All fathers had associated cancer with "imminent death," and none of the fathers had imagined such a serious illness. Fathers' reactions to the child's confirmed diagnosis of ALL included shock, fear, and guilt. Fathers were shocked to hear of the diagnosis because they believed that cancer occurred only in the elderly population and that the children were all previously healthy. However, all the fathers accepted the diagnosis from a Western medicine perspective, without seeking a second opinion. Only one father expressed intense guilt and blamed himself for his son's illness. This father's feelings of guilt were caused by letting his son consume cup noodles for lunch and saving his lunch money to buy a model train. This father attained only an elementary school education, and he described his feelings saying:
I blamed myself because I should have told him not to eat cup noodles for lunch everyday. The preservatives might have caused his disease. (Father 3)
None of the fathers blamed themselves for their child's illness; however, one father believed that his genes were somehow responsible for the child's ALL. Shock and disbelief were the initial emotional reactions to their child's confirmed diagnosis of ALL. If the fathers were upset, they did not show their emotions to their spouses and believed that they needed to be strong and supportive of their wives. In addition, it was their duty to provide such support because Chinese men are often required to be stoic because they are considered heads of the families. One father described his feelings saying:
I had to suppress my own feelings; my wife was on the verge of a mental breakdown and I had to support her. I had to be strong for her, and it was my duty to comfort her. It was alright. I can take charge of the situation as I am stronger and I am the head of the family. (Father 8)
Factors that influenced the sources of support used by the fathers varied according to the living arrangements of the family, their relationships with the pediatricians, and whether they were close to their colleagues at work. Two fathers stated that they received great support from their extended families. One cited his father and 2 brothers as his main source of support. This finding was unusual but understandable, as this father shared an apartment with his father and his 2 brothers and he was very close to them. This father states:
I have a lot of support from my father and 2 brothers. They give me comfort and reassure me. It is great to have them around. (Father 5)
Extended families were called upon to help in times of need by all of the fathers in this study. This practice is acceptable among Chinese families and is influenced by Confucianism, wherein one's obligations lie with one immediate and extended families.
Another unlikely source of support for the fathers came from the children's pediatricians. Three fathers reported that they received telephone calls from the physicians offering comfort and support after the child's confirmed diagnosis of ALL. These fathers were university graduates, and 2 had their businesses in the healthcare field. The support from the physicians was in the form of information and knowledge about ALL and its treatment. The fathers reported that they felt comfortable asking questions and had no more difficulty in getting information from the physicians than their wives did. This might be explained by the difference in the physicians' attitudes toward the fathers, as all of the physicians are men and therefore treat another man differently than the mothers. This is illustrated by one father saying:
I know the pediatrician, we were classmates at university. I can phone him any time, and he has been a great support to me. I trust him and his decision. (Father 8)
The fathers recovered quickly from the initial shock after their child's diagnosis. According to all of them, this was essential because they were the primary supporters for their spouses and felt that they needed to suppress their emotions to be able to do this duty. In addition, they needed to continue to work because they were the only breadwinners. Chinese fathers were expected to be "strong" and to not show their emotions. However, 4 of 8 fathers cried during the interview and welcomed the chance to share and release their emotions. This was contrary to the report that Chinese men are generally considered stoic and would not show their emotions to others.21 One reason for the different findings was the time of interview of these fathers being late in the evening, when there were very few individuals around. This made it easier and encouraged the fathers to show their emotions, which had been suppressed for a very long time. Another reason was that the researcher had established a trusting relationship with the fathers by meeting with them twice before interviewing them. This is illustrated by one father saying:
It is the first time that I have cried in front of people. It is great relief for me, I have been trying to stay strong for my wife[horizontal ellipsis]. (Father 7)
Disclosure of the Child's Diagnosis
The disclosure of the child's diagnosis to the child was not immediate, as all the fathers needed time to come to terms of the diagnosis themselves. Whether or not to tell the child depended mainly on the age of the child. Four fathers whose children were younger than 3 years chose not to tell the child because of their age and assumed that they were too young to understand their condition. Two fathers decided to tell their children aged 5 and 6 years only the partial truth because they thought the children were old enough to know that they were sick. One father stated:
No, of course I did not tell him that he has the disease[horizontal ellipsis]. I told him he has a condition in which his cells have to fight germs all the time and that it will take a long time to treat and to get better. (Father 4)
The fathers of the 2 teenagers did not tell them their diagnosis because these fathers felt that the children had already suspected they had cancer because of the ward they were admitted to. The fathers did not openly discuss the diagnosis but insisted that they would tell the children the truth about the diagnosis if the children asked. One possible reason for their hesitation was they did not know how to tell the children their diagnosis when faced with the challenge.
I am pretty sure my son knows the diagnosis. He read the plaque outside the ward, and it said "children's oncology." He was very quiet and he once told his mother that if he did not make it to just look at it as if we had lost a bet on the stock market. I do not really know how to tell him[horizontal ellipsis]. (Father 8)
All older siblings of the affected children were informed of the diagnosis. Fathers reported no difficulty in telling other children because they wanted the siblings to understand why more time was spent with the sick child to eliminate the development of sibling rivalry. They also hoped that the involvement of older children in the care of the sick sibling could promote growth and independence of these children and prepare them better for life's hardships. Research studies on siblings' experiences with childhood cancer have reported similar findings.22,23 There is a cultural implication in that older siblings of Chinese children diagnosed with cancer are expected by their families to accept social obligations and provide care to the sick children.
Only 2 fathers declined to tell their mothers regarding their child's diagnosis because their mothers were elderly and were not in good health. The fathers did not think that it was necessary to tell their mothers the truth, as they were not able to help the families. It seemed that the decisions whether to tell the elderly parents was influenced by Confucian teaching in which the children are expected to protect the parents from harm, especially parents who are old, as one father stated:
I did not tell my mother about my son's diagnosis as I did not think that it was necessary. She is old and not in good health[horizontal ellipsis]. I did not want her to worry, and she is not able to do anything anyway. So, it is better for her not to know, it is pointless and it is my duty to protect from getting hurt. (Father 8)
All but 1 father told their colleagues at work about their child's diagnosis. According to these fathers, it was necessary to tell the truth to get the time off work, and in return, they also received support in the form of information and encouragement regarding the child's condition.
Social Support of the Fathers
The need for support was another category that emerged from the data. Fathers stated that they would like to receive more support from their wives but insisted that they had enough support from other members of their extended families, their physicians, their coworkers, and their friends to cope with the situation. The nature of the support received from the above groups was different, according to the fathers. The fathers appreciated the support received from the physicians and their coworkers more. Possible reasons are that the support received from these individuals was practical in nature-information on the child's condition and arrangement to have time off from work were essential to the fathers' immediate coping needs when their child's diagnosis of ALL was confirmed.
The pediatrician and the doctors at the hospital were very helpful. They told me the necessary information about my child's condition, and this was what I needed to hear at the time. I want facts and that was what I needed at the time of diagnosis to get me through[horizontal ellipsis]. (Father 4)
The support that the fathers received from their wives and immediate families was considered more important after the initial shock of the confirmed diagnosis. All fathers unanimously identified their wives as their most supportive person, and their marital relationship was also a source of comfort to them. Support received from the immediate families was both emotional and financial in nature, and the fathers stated that they were grateful for the help they received. This support was considered practical and sustained them throughout the first 3 months of the child's diagnosis.
The findings of the study indicate that fathers learned about their child's condition directly from the physicians. The fathers purposely timed their visits at the time of their child's diagnosis to coincide with the time when physicians made their visits to the ward. Although all the fathers were extremely satisfied with the interaction with the physicians at the time of their child's diagnosis, the fathers of children older than 5 years complained about medical personnel asking questions relating to the child's medical status and treatment therapy in the child's presence. Therefore, the feelings of the fathers toward the physicians were mixed-they were grateful for the information they received at the onset of the child's disease but was not happy with the way information about the child was shared among different medical personnel.
The fathers stated that daily care of their child rested with their spouse, who received their support from the nurses. Thus, the fathers acknowledged the contribution of both physicians and nurses in providing support to them and their spouse so that they could care for their child effectively. Similar findings have been reported in other studies, which argued that support from medical professionals is necessary in the coping of fathers with a child with cancer.24,25
Effective Coping Mechanisms of the Fathers
Two coping mechanisms were identified by the fathers. These were open communication and the use of religious rituals. All the fathers indicated open communication as their most effective coping mechanism. In addition to the explanation and information provided by the physicians, the booklet on ALL given to the parents when the child was first diagnosed was deemed extremely useful. The child's treatment schedule indicating when the child was to return for treatment and for follow-up visits was particularly helpful. This information was necessary for the fathers to plan their work day in case they wanted to accompany the child to the appointment.
The booklet and the treatment schedules were very helpful. I do not have to guess when we need to bring him back for treatment because it is all written down[horizontal ellipsis]. (Father 2)
The fathers also appreciated the honest approach taken by the physicians. They received facts about their child's condition and felt that the physicians were not trying to provide them with false hope. They trusted the physicians.
Dr L was very open and told us everything about the disease and its treatment. He was very honest and answered all our questions and did not try to give us false hope. I appreciated his honesty and I trusted him. All of this helped me cope with the situation. (Father 7)
The importance of trust in building relationships between patients and physicians has been well documented.26 In this study, the development of trust between the fathers and physicians developed almost instantaneously regardless of whether the fathers knew the physicians personally or not, because the fathers felt that the physicians were willing to help and provide information in an honest manner, as described above. The fathers stated that a prerequisite for effective communication was to have a good relationship with the physicians.
All fathers in this study concurred that religion played a major role in providing them with support. Four fathers stated that they had practiced a daily ritual of incense burning and the offering of simple gifts consisting of fruits to their ancestors and that the frequency of such practices had increased after the child's confirmed diagnosis. These fathers found that the ritual of incense burning provided them with a sense of hope, as illustrated by one father:
I burned incense and put out food offerings in the morning occasionally before she was sick, but I certainly do it daily now hoping that she will soon recover[horizontal ellipsis]. (Father 1)
In addition to burning incense, one father reported consulting a fortune teller from mainland China to ask about the fate of his son. This consultation was done over the telephone, with the father providing the fortune teller the exact time and date of his son's birthday. The consultation provided direct affirmation that the child was destined to face a major crisis that year and that he would be fine and recover from the illness.
I phoned a fortune teller in mainland China and told him my son's time and date and year of birth and nothing else. He told me that he was destined to have such an illness because he had angered some gods, but he would survive the ordeal[horizontal ellipsis]. This gave me hope and worked for me. Others might think I am superstitious[horizontal ellipsis]. (Father 3)
The use of religious rituals was considered a useful coping strategy for the fathers, and this finding is supported by Yeh.16 The fathers in this study were more religious than their spouses, as they either increased or maintained their religious rituals after the onset of the child's illness. One reason might be that their spouses were busy caring for the child, resulting in higher maternal distress, and rituals such as going to temples and praying for the children's recovery were delegated to the grandmother. Fathers actively pursued the religious rituals at home as a way of getting their minds off their child's illness and allowing them to have some control of the situation.
The findings of the study indicate that fathers need support from healthcare professionals, and in particular, they point to the need to have a clear communication with the physicians about their child's condition. The fathers received ample support from their coworkers, and they had little or no difficulties in revealing the child's diagnosis, as it was important to guaranteeing time off to be with the children for their trips to the hospitals. Therefore, whether to tell others of the child's diagnosis depended on whether there was a necessity. The fathers in the study had no hesitation in sharing their experiences with the researcher. They seemed relieved and welcomed the opportunity to discuss their experiences on how they coped with fathering a child with cancer. They were happy to be heard, understood, and comforted. All the fathers coped by seeking information about their child's condition and designed coping strategies that were effective to allow them to function and meet their role expectations at home an at work. It seemed that the fathers sought out information about their child's cancer and became effective advocates for their children by supporting their spouses by providing comfort and effectively sharing in giving care to the children.
Implications for Nursing Practice
The findings of this study improve nurses' understanding of the needs of Chinese fathers with a child with cancer. Nurses must provide care to the entire family, and fathers play a critical role in the care of children with cancer. They provide physical care and emotional support to the children and their spouses by getting information about the child's illness and are often the main breadwinners. Support provided to the fathers is generally overlooked as nurses, in particular, often concentrate in supporting the mothers because they are more open to showing their emotions after learning about the child's diagnosis. It is vital to increase awareness among nurses and other healthcare professionals who work with children with cancer to recognize the needs of these fathers because it is important to provide holistic care to the children and their families. In this study, the fathers were willing to share their emotions, given the opportunities to express and voice their concerns and feelings. The study clearly indicates the necessity and significance of providing information to the fathers to help them cope with the impact of their children's cancer on their families. The information must be individualized to address the needs of the fathers throughout the treatment period. The study indicated the need for a thorough assessment of the fathers' needs to provide appropriate information and support for the fathers. It is recommended that regular meetings be scheduled to update the parents regarding the condition of their children if necessary.
Conclusions
For Chinese fathers, coping with a child with cancer is both a family and public affair. The current study has demonstrated the willingness of these fathers to seek help both from families and friends to help them through the initial shock of the child's diagnosis. The need for support and information of the fathers was similar to the needs reported in other cultural groups. The practice of incense burning is helpful to all Chinese fathers and provides a sense of control and comfort to them. The ritual is related to asking for extra protection for the children through praying to one's ancestors and has its roots in Confucianism. This is widely practised by Chinese worldwide, especially in times of grave illness and emergency. The use of religion has not been well studied and warrants further studies. It is important to note that fathers who participated in the study were all from Hong Kong and, perhaps, were influenced by Western culture. It would be interesting to include fathers from Mainland China to see if their openness to their child's diagnosis and their way of seeking help are the same as those of fathers in this study. Findings in this study indicate that Chinese cultural values continue within the families, and healthcare professionals must be sensitive to the different needs of both parents. The results of this study contribute to improving the understanding of healthcare professionals about the needs of the fathers, which is vital to the provision of holistic care to the whole family.
ACKNOWLEDGMENTS
The author thanks Dr C.K. Li for his help in recruiting participants and the parents who agreed to take part in this study.
References