“I’ll Try My Best to be a Dad”: The Experiences of Japanese Fathers with Cancer

Abstract

This study explored the experiences of Japanese fathers with cancer. Twenty-four adult men undergoing cancer treatment and raising minor children (aged ≤ 19 years) participated. Data gathered using semi-structured interviews were analyzed using the grounded theory approach. One main theme— “transformed identity: cancer made me into a father”—and eight additional sub-themes were identified from the analysis. Fathers with cancer experienced changes in work and income; weakening of their bodies and minds; and a transformation from the protector of their children to the protected, which severely challenging their identities. Through interaction with their children and self-reflection, fathers started to examine fatherhood for the first time, heightening their self-awareness as fathers. Nurses can support fathers by facilitating interactions with their children while receiving treatment and by understanding and respecting the range of emotions identified in this study.

Introduction

Research conducted in the United States has shown that 18.3% of patients who were newly diagnosed with cancer were parenting children aged younger than 18 years (Weaver et al., 2010). A similar survey conducted in Japan found this figure to be 24.7%; annually, 56,000 new patients are diagnosed with cancer, and more than 87,000 children learn that their parents have cancer (National Cancer Center [NCC], 2015) Based on demographic trends and changes in family structure, the number of patients with cancer raising minor children is expected to continue to rise. Japan has enacted the Cancer Control Act (e-Gov, 2006) and has begun to take measures against cancer. Considering concerns over the fact that patients of parenting age face unique struggles and that the potential impact may be great—not only to the patients themselves but also to their families and society—the Basic Plan to Promote Cancer Control Programs (Ministry of Health, Labour and Welfare [MHLW], 2018) emphasizes the provision of support to patients who are also parents.

Research on patients with cancer with children has been conducted both domestically and internationally since the 1990s (Semple & McCance, 2010; Tamura et al., 2019). In particular, ample qualitative research conducted outside of Japan has highlighted the importance of providing support for patients raising minor children, and a variety of different intervention methods have been investigated (Inhestern et al., 2016). However, most current parental support efforts are designed with mothers’ experiences in mind, and scant research has addressed fathers with cancer (O’Neill et al., 2013). Men’s difficulty in seeking help, even if they have cancer and need support, has been well-documented and attributed to the influence of sociological issues, such as hegemonic masculinities, resulting in men hesitating to seek assistance (Banks, 2001; Cecil et al., 2010). This tendency to keep feelings internalized puts men at risk for depression (Keller & Henrich, 1999), further underscoring their need for support. Men are aware of the lack of support in their roles as fathers and husbands and that the differing needs of fathers and mothers is clear (Keller & Henrich, 1999; O’Neill et al., 2013). Although there is an important body of qualitative research on the connection between fathering and health (Marsiglio, 2016; Palkovitz, 2014), much of this work focused on healthy fathers. Furthermore, some scholars have examined masculine identity following an acquired physical impairment or disability (Gerschick & Miller, 1995; Robertson, 2006), and studies on fathers with cancer are still at the stage of examining individual experiences (Elmberger et al., 2002; Lundquist, 2017; O’Neill et al., 2016). Moreover, there are no studies in Japan that have conducted any research in this direction.

Since 2000, the Japanese public has become increasingly aware of the importance of fathering, and an increase in maternal employment has underscored the need for men to become active in housework and childrearing (Shwalb et al., 2010). These changing norms bring with them a new image of the Japanese father: one who can balance his work and home lives and care for his children. In the 1970s and 80s, when most Japanese fathers were children, nearly all households had stay-at-home mothers; the primary role of the father was to be responsible for his family’s finances (Ogata, 2011). As societal expectations for fathers have changed from generations past, how have today’s fathers spent their time since being diagnosed with cancer, and how have they adjusted to what it means to be a dad? To develop care programs for fathers with cancer, we must explore their experiences and how they have been shaped by cultural and historical shifts. Therefore, we sought to understand the experiences of men with cancer as fathers.

Research on Fatherhood

Research on fatherhood has recently begun to draw increased attention. Prior to this, the focus of parenting researchers had been on motherhood (Lamb, 2010). The industrial revolution in the seventeenth and eighteenth centuries forced fathers to leave home to work and mothers to stay-at-home as the main caregiver. This gave rise to the popular idea that child development requires maternal involvement (Ogata, 2011). After World War II, and until recently, the nuclear family—dominated by a breadwinning father and a homemaking, childrearing mother—was the dominant family (Lamb, 2010). Under these circumstances, it was not surprising that research advanced under the belief that children’s early development was dominated by mothers. Lamb (1975) published “Fathers: Forgotten Contributors to Child Development,” in which he advocated the need to consider the impact of fathers on parenting. Subsequently, Lamb (1977) investigated parent–child attachment and showed that children did not favor either the mother or the father and developed equal attachments to the father through parental involvement. Ensuing studies on fatherhood found that children’s development is affected by the father’s involvement (Lamb, 2010; Pederson, 1980; Williams, 1992), and that attachments with the father plays a pivotal role in children’s building of friendships with their peers (Lieberman et al., 1999), promoting the recognition that fathers have a large impact on the development of their children. In East Asia, the growing popular interest in father–child relationships and the tendency of some East Asian social scientists to study topics that had become mainstays of Western research have dramatically expanded the field of research on fathering in East Asia (Shwalb et al., 2010). In contrast, there has not been much research on fathering in Japan (Ogata, 2011).

Father’s Identity and Role

In understanding fathers’ experiences, researchers are paying attention to the importance of thinking about their identities (Adamsons & Pasley, 2013; Pasley, 2014). Symbolic interactionism, which is based on Mead’s (1967/1934) ideas, provides an important theoretical foundation for understanding identity as a social process. Symbolic interactionism was proposed by Blumer (1986), who showed that human beings behave according to the meaning derived from social interactions, which are revised as the individual processes their experiences. Since the introduction of symbolic interactionism, several different theoretical frameworks have been built. The identity theory, common in the study of fatherhood, is also derived from symbolic interactionism. The identity theory, proposed by Stryker (1968) and expanded by Burke (1991, 1997), focuses on the individual’s integration of societal expectations regarding the meaning of occupying particular social positions or statuses (e.g., parents, spouses, employees, etc.) and the behavioral expectations associated with such statuses (Adamsons & Pasley, 2013). Theoretically, identities are organized hierarchically, and this hierarchy is also reflected in behavior (Stryker & Burke, 2000).

Men occupy various statuses, such as fathers, husbands, and employees. In a comparative study on the importance of statuses, parent status had the highest mean rating, followed by worker status and spouse status (Kaufman, 2013). Most fathers consider their father role to be the most rewarding and the one with the greatest influence on their lives (Altergott, 1988; Palkovitz et al., 2001; Rane & McBride, 2000). In a study of men’s perceptions of their father role identity, Olmstead et al. (2009) identified seven role identities within the father status: provider, protector, teacher, supporter, disciplinarian, caretaker, and co-parent. Their study showed that the provider role was one of the most prominent fathering roles. Other studies have recognized the enduring centrality of the breadwinner/provider role as an aspect of men’s fatherhood identity (Featherstone, 2003; Ogata, 2011; Townsend, 2002), and found that men who do not have jobs are frequently branded as unworthy, morally inferior, and failures (Townsend, 2002). One study explored the notion of unemployment as a crisis of masculinity (Haywood & Mac an Ghaill, 2003). This is also relevant to fathering and child safety efforts. For instance, the notion that the father serves as a “protector” is consistent with dominant masculine ideals of strength and control. Fathers who take on this gendered identity consider it their responsibility to defend their children from the dangers inherent in the outside world (Allen & Daly, 2005; Doucet, 2004; Summers et al., 2006), suggesting that protecting children from an authoritative position is one of their important identities as a father. To understand the experiences of fathers, it is also necessary to understand that masculinities are defined in culture and sustained in institutions (Connell, 2000), and socially constructed dominant ideals of masculinity are context dependent (Connell & Messerschmidt, 2005).

Identities are the self-meanings given to the role expectations associated with a social status that are reflected in behaviors (Stryker & Burke, 2000). Many men start to develop their identity as a father before they have children (Marsiglio et al., 2000). Some empirical research is oriented toward identity construction across men’s “self-as-father trajectory” over time (Marsiglio, 2004). A subsequent study examined how role models and personal turning points shaped men’s identities across the “self-as-father trajectory” (Scheibling, 2019), and understood father’s identities as a trajectory, suggesting that identities are processes that change through life events.

Purpose of the Study

Based on current demographic trends and changes in family structure, the number of patients with cancer who are raising minor children is expected to continue to rise. Patients of parenting age face unique struggles and the potential impact may be great—not only to the patients themselves but also to their families; further, society emphasizes the provision of support to patients who are also parents. Studies on parents with cancer have noted that fathers face unique difficulties; however, most studies of cancer patients with children have focused on mothers, with few studies focusing on fathers. To develop care programs for fathers with cancer, we must explore their experiences and how they have been shaped by cultural and historical factors. Therefore, the present study was conducted to address the following research question: What is the subjective experience of the father with cancer?

Methods

The qualitative design used in this study was informed by a grounded theory approach (Corbin & Strauss, 2015) and identified themes arising from analysis of the self-reported experiences of fathers with cancer.

Participants

Our participants were adult males who were raising minor children when they were notified that they had cancer and who had received treatment for cancer. While we did not exclude potential participants by type or stage of cancer, or whether the cancer was new or recurrent, we did exclude individuals whose cancer onset occurred before their child was born and their cancer was in remission. Further, in accordance with Article 4 of the Japanese Civil Code, which states, “The age of majority is reached when a person has reached the age of 20” (e-Gov, 2019), we defined minors as individuals aged ≤19 years.

Participant recruitment

Participants were recruited from organizations for patients with cancer and children via snowball sampling from the researchers’ and research collaborators’ acquaintances. Recruitment via patient organizations was accomplished by requesting the following organizations to directly reach out to qualifying members: Cancer Parents (https://cancer-parents.com/), an organization for patients with cancer who have children (representative: Yohei Nishiguchi); Cancer Notes (http://gannote.com/), an interview information site for patients with cancer (chairman: Kishida Toru); and the Testicular Cancer Friends’ Circle (http://j-tag.jp), an association of patients with testicular cancer (representative: Atsushi Kaihatsu or deputy representative: Nobuyuki Suzuki). Snowball sampling was accomplished by verbally asking or sending emails to acquaintances of the researchers to ask anyone they thought would be interested in participating in the study to contact the researchers.

Participant overview

Twenty-four Japanese men, recruited from eight of the 47 prefectures in Japan, participated. Most were in their late 40s (n = 10, 42%), followed by those in their early 50s (n = 5, 21%). Many different cancer types were represented, including eight with testicular tumors; two each with bile duct cancer, pancreatic cancer, esophageal cancer, and brain tumors; and one each with liver cancer, thyroid cancer, mediastinal germ cell tumor, tongue cancer, colon cancer, rectal cancer, lung cancer, and chronic myelogenous leukemia. Twelve men (50%) had metastatic recurrence. Twenty-one were married, two were divorced, and one was widowed. The men had received their cancer diagnoses between one and 16 years before the study; the average age of their children at time of diagnosis was 10.6 and ranged from under one to 19 years. The men had between one and four children each (N = 43 children; 20 boys and 23 girls). Concerning their occupations before contracting cancer, 19 were company employees, two were company executives or managers, two were public servants, and one was self-employed. Four had to change their profession owing to cancer, were unemployed, or employed part-time. The household incomes of seven men (29%) decreased after their cancer diagnosis (Table 1). In Japan, the average annual income for a household with children aged <18 years (i.e., a child-raising household) was USD 70,000 in 2016 (Ministry of Health, Labour and Welfare [MHLW], 2017).

Table 1.

Participants Characteristics (N = 24).

Characteristic	Item	N
Fathers’ age (years)	Mean ± SD (range)	46.1 ± 6.6 (31–59)
	≤35	2
	36–40	3
	41–45	6
	46–50	7
	51–55	4
	≥56	2
Marital status	Married	21
	Separated	2
	Widowed	1
Years since cancer diagnosis	1–5	16
	6–10	4
	11–15	3
	16–20	1
Metastatic or recurrence status	Metastatic or recurrence	12
	Non metastatic or recurrence	12
Children’s age at diagnosis in years (N = 43)	0–5	15
	6–10	14
	11–15	8
	16–19	6
Decrease in household income	Less than 1 million yen	2
	Between 1 and 2 million yen	0
	Between 2 and 3 million yen	1
	Between 3 and 4 million yen	1
	Between 4 and 5 million yen	1
	Lost their household incomes altogether	2
	No change	17
Geographic location	Tokyo	9
	Kanagawa	6
	Osaka	2
	Chiba	2
	Aichi	2
	Miyazaki	1
	Niigata	1
	Okinawa	1

Data Collection

Data collection was conducted from June 2017 to October 2019, and data were taken from (1) interviews with participating men and (2) self-administered questionnaire.

Participant interviews

Each man participated in one or two semi-structured interviews, ranging from 40 to 90 minutes, which were conducted in Japanese. Essentially, the interview was conducted once; however, two additional interviews were conducted in cases where participants’ situations had changed in a way that seemed to be related to the study. Some participating men contacted the researcher via email after the interview; when they indicated changes in their situation that seemingly necessitated another interview, it was conducted. The possibility of additional interviews was discussed with participants prior to the study, and the interview was conducted according to the interview guide (Table 2). Because the grounded theory approach (Corbin & Strauss, 2015) seeks to generate well-developed concepts, if further questions or information were needed as part of the analytical process, participants were asked follow-up questions. To prevent follow-up questions from affecting participants’ beliefs or frame of mind, they were posed as open-ended questions, after the interview. Interviews were recorded after obtaining participants’ consent, and verbatim transcripts were generated from the recorded data.

Table 2.

Interview Guide.

1. Please tell me your situation from diagnosis to the present.

2. Tell me about your relationship with your child before diagnosis, during treatment, and now.

3. How does your child understand your cancer?

4. What do you think about being a parent?

Questionnaire

A self-administered questionnaire, consisting of 12 questions on participant characteristics, including age, types of cancer, changes in work and in household income before and after cancer, and marital status; as well as demographic questions about their children, including age and sex, was employed in this study.

Analytical Methods

Data analysis was guided by analytical methods commonly used in grounded theory (Corbin & Strauss, 2015). First, a verbatim transcript of each interview was generated. The transcripts were read repeatedly in an attempt to understand fathers’ experiences, and the underlying meaning of their words and actions. Meaningful phrases related to fathers’ subjective experiences were extracted and entered into an Excel worksheet. Each phrase received a number, generated in order from the start of the interview (e.g., Participant A’s first phrase was numbered A-1). Codes were assigned to the phrases to designate their meaning, and each phrase was carefully considered. Both the properties and dimensions of the phrases were entered into the Excel spreadsheet. The codes were categorized based on comparison, using the question: “What is the subjective experience of the father with cancer?” This was done while continuously comparing and asking questions, such as what is the father talking or thinking about? Why? How do these data entries compare—how do they differ, and where are their similarities? Category names were assigned to the fathers’ experiences as represented by the categorized codes and their associated data; for example, “A-1 experiencing a loss of control after developing cancer.” Each category was numbered to assist with the identification of related data. Next, categories generated from the data of a single participant were compared and themes were derived from similar categories. For each completed theme, the properties and dimensions were organized, and a note was created; summarizing the category numbers of each participant contributing to the theme, the theme name, its content, properties, and dimensions.

For each interview, steps 1 through 7 were repeated and the identified themes were integrated into the notes summarizing the previously completed themes. Continuous comparison was conducted here as well. The content included in the themes was compared, and the themes themselves continuously created and dissolved while adding further properties and dimensions from the new data to refine the themes representing the fathers’ experiences. The author also kept a research diary during the research period. This diary included introspection into the author’s own inclinations and assumptions, and it was intentional in its exploration of the biases and premises influencing the author’s interpretations. The author wrote down her own thoughts and feelings throughout the study to gain deeper insight into the analysis. Steps 1 through 8 were repeated for each interview. Saturation was reached when the themes integration step was repeated without any modifications to existing themes. We diagrammed fathers’ experiences along the cancer trajectory and identified an over-arching theme to describe fathers’ experiences concerning having cancer (Figure 1).

Figure 1.

Conceptual diagram of fathers’ experiences with cancer.

Rigor

Coding was mainly conducted by the first author, and it was shared with the team members to confirm that it was based on the actual data. In addition, analytical results and interpretations were shared with participating fathers to confirm there was no discrepancy with their experiences. Simultaneously, efforts were made to minimize bias by adopting both the reflective diary and the grounded theory approach as analytical strategy (Corbin & Strauss, 2015).

Ethical Considerations

Written consent for participation was obtained from organizational representatives and participants, only after the aim of this study and its ethical considerations were explained. This study was conducted with the approval of the Ethics Review Committee of the School of Medicine, Tokyo Medical and Dental University (no. M2016-310), and the permission of the Dean of Medicine.

Results

Based on fathers’ narratives of their cancer experiences, one main theme and eight sub-themes were identified and used to develop a conceptual framework describing the influence of the men’s experiences of cancer on their identities as fathers. The experience of cancer challenged men’s identities as fathers and changed their notions of the meaning of being a father and the father they wanted to be. The process by which fathers changed their perspectives on fathering is illustrated in Figure 1. In the sections that follow, the main theme describing this process and each of the sub-themes are explained in detail, along with representative quotes from participants.

Main Theme

Transformed identity: Cancer made me into a father

Through their battles with cancer, fathers realized that their time was limited and that they were weak, and just how important their children were to them. These experiences and thoughts, of which the fathers were unaware before their diagnoses, caused them to ask themselves whether they had really been the best fathers they could have been, and prompted them to change their values. Prioritizing time with their children above all else was a big change for the fathers, who had previously considered their work or money to be the most important things in their lives. Experiencing illness and understanding the emotions of vulnerable individuals also helped the fathers gain a more well-rounded, deeper sense of humanity. Fathers who regarded their situation as serious can be perceived as becoming stronger and more emotional as their situation grew more grave, as a result of experiencing the value of spending time with their children, considering what they could do to prepare for a future in which they will no longer be there, and beginning to care for their children even more than before. For the sake of their children, the fathers would even look past their own deaths, act in a disciplined manner, and continue to grow and develop.

I have always been a strong person. My body was strong; but I was emotionally strong too; so, I don’t think I understood the pain of sickness or the feelings of a weak person. I learned that the strength I had before my sickness wasn’t true strength.

When my son was young, in kindergarten, and I was healthy, I thought that kids were just pets. Beloved pets. That’s why they’re cute, I thought. I mean, I wanted to watch over them to prevent them from getting sick; but, after getting sick myself, one thing that changed is how I thought about them—the issue of how to interact with them as humans in their own right because I started thinking about what would happen to them after I’m gone. As long as I’m alive and healthy, I can take care of them, right? But then I thought about what would happen to this “pet” once the person supposed to take care of it passes away? And that question shifted into asking “What should happen?” After all, kids aren’t pets, so what should I do to ensure that these humans can live human lives? That began to change how I looked at them and, eventually, how I acted with them.

I think the cancer made me into a father. Until then (before becoming ill), I really didn’t have that sort of awareness, you know?

Sub-themes

Being swallowed by a torrent of cancer

The fathers, most in the prime of their lives and otherwise in considerable good health, had their cancer detected in a regular physical examination; whereas, for others, the diagnosis followed an investigation of symptoms they could no longer ignore. They were at a stage in their life where illnesses that seriously jeopardized their health were almost out of the question, not being at ages at which cancer, which is even associated with death, would be a worry. One of the fathers was a doctor; he knew that even young people could get cancer, therefore, he was not so shocked. For most fathers, however, it is shocking when something that should not happen, happens to them. Those with cancers that did not require much time to definitively diagnose essentially moved immediately from diagnosis to treatment. They did not have time to cope with their own complex emotions carefully and thoroughly, and they certainly did not have enough time to think of their children. Dealing with the administrative procedures associated with receiving hospitalized care, trying to do whatever they could at work, and sharing with their family left the fathers with their hands more than full.

After it became clear that it was, indeed, cancer, I was hospitalized the next day and put into surgery the day after. Those immediate things, the procedures for the work I’d been forced to do became the priority. After being hospitalized and operated on, well, I did keep in touch with them (family); but my work, rather than my home life, came first. I just didn’t want to cause my colleagues any trouble.

After their administrative procedures and communications had subsided, vague anxieties took hold, such as how this disease would affect their children, whether they would could be there for their children’s futures, and what would happen to them. Things were rushing at them at an incredible pace, and as they tried to cope with whatever they could, such as their emotional state after being told they had cancer, they felt themselves being swallowed by a torrent of all things relating to their disease. They felt themselves losing control.

At the same time as all of that (making various arrangements), I was, of course, rather shocked myself. I remember one thing very clearly, actually. I went to pick up my daughter from her kindergarten. I went there (to pick up my daughter); but when I saw all those kids, the tears just start coming. I just thought to myself, I don’t think I’ll be able to see these kids grow up.

Recognizing they are not the fathers they thought they were

The fathers held that being strong in mind and body, protecting their children, being the breadwinner, and providing for their family were core aspects of their identities. However, after being diagnosed with cancer and experiencing the physical and mental agony of the prospect of death or the side effects of their treatment, they became weak, lost weight, and lost their hair. They were forced to come to terms with this change in their external appearance.

Even if I was in a pinch, I was the type that could manage if I did my best, using my physical strength. . .I can’t do that anymore; so I’m feeling lost.

I wonder if the end of treatment will come. I wonder if it’s really working, I’ll heal, it hurts, my body isn’t working, my appearance is changing, I feel like I’m dying. It was much more unstable, and I was always angry and screaming.

Simultaneously, when they felt they should have been protecting and raising their children, they were fighting their illnesses. They felt that showing that side of themselves to their children, and their inability to continue working in the way they had wanted, was causing additional worry or was a burden to their child. Most fathers felt that their position as the family breadwinner was important; but their treatment often left them unable to work in the way that they wanted, and some even quit their jobs. Once their ability to work and secure the income their family needs became jeopardized, the fathers lost their self-confidence, and they became restless and insecure.

I felt guilty. That I couldn’t protect my family, that I couldn’t get the results I wanted at work (because of the cancer). Down, down, down, down, my inner thoughts just kept going down in the depths. . .Of course, I could never tell my wife that. I just continued to lose confidence in myself. As a man, as an employee, as a member of society.

After all, the father’s responsibility is financial and, as a man, it’s painful and hard to even cover the cost of living.

Further, the fathers felt that it was difficult to be productive members of society when they could not go to work owing to medical treatments and they feared losing their jobs. A cancer diagnosis caused them to lose the “fatherliness” they had thought they had, and they felt confused and scared at their realization that they had become a different person.

For rehabilitation, when 40 men walk around the elementary school in the daytime, moms call the police. I end up with suspicious person information.

The things I can actually do are becoming fewer. It’s bad to say; but I feel that I’ve become a person with low market value. I’m being left behind more and more as everyone goes through their careers.

Even if you say I should just sit around and do nothing and just rest, what am I supposed to do? I don’t think I can get a full-time job anyway. I ask myself, “Who am I? What am I?”

When fathers experience challenges, they often pretend that nothing is wrong when they have children; for example, by not showing their pain, and refusing visits from their children so the child cannot see their decline. Most of the participating fathers found it difficult to share their worries and perceived weakness with others, suffering in silence instead.

I didn’t want my children to see me in pain; so I called them to the hospital only when I was feeling good. When a child is here, I don’t want to hurt my child and I want to protect the image of my fatherhood.

I can’t cry in front of my family; so I went to the bedroom, turned off the lights, and went into the back of the bed and cried. I went to the bathroom to check if my eyes were swollen, and then managed to check and returned.

Realizing that time is limited

A cancer diagnosis is a cold, hard reminder of the fact that participating fathers’ lives were limited. Death becomes a steadfast companion, considering the common view that “cancer equals death,” with life-threatening experiences forming part of one’s treatment such as the death of one’s wardmates while hospitalized. The realization that the life that you have lived thus far has been entirely upended is shocking.

After all, when it comes to cancer, it makes me think of death. No one lives forever. But we don’t think about it in our thirties and forties. There is a point where life suddenly feels limited; it gets dark.

Once fathers have had cancer, even after their treatment had been completed, the fear of metastasis or recurrence remains with them—an anxiety you can never fully wash away. It is the beginning of a life that continually reminds you of your connection to death. That time limit starts to cast into relief exactly what is most important to them.

The numbers just got worse this time. Oh, I realized again that I had to deal with illness for the rest of my life.

Cancer is my attendant. I can’t help it because it’s nearby; so I wonder what to do.

I definitely realize that my time is limited, especially with my children. I’ve come to think of it as “there’s no time but the present.”

Experiencing cancer’s effect on children

After receiving their cancer diagnosis, the fathers encountered reactions from their children they had never experienced before. These included hearing frank, blunt questions from their children about their death or the cancer itself, seeing atypical expressions on their children’s faces when at the hospital, and experiencing changes in their children’s emotions and behavior after being discharged from the hospital.

The sort of behavior that fathers encountered from their children included statements like “Daddy, you have cancer, huh?” and “I’ve realized that people die. I don’t want to die,” or seeing their children reading books on cancer. These behaviors made fathers feel stressed. For some fathers, their feelings about their children’s sudden behavior changes partially resulted in their awareness that they had not been actively communicating with their children about cancer. Fathers felt strongly that their children’s mothers would be better at knowing what their children were thinking, and many of them left it to their wives to tell their children anything and everything related to their illness. Therefore, some fathers stated that they did not know when their children were told or to what extent their children were aware of their circumstances, causing them to be surprised by the ways in which their children reacted to and accepted their fathers’ situations.

Interviewer (I): Did you think about telling them yourself?

Participant (P): Myself? Er, well. . .let’s see. I suppose I thought that that stuff was better left to her. Hmm. . .Well, I guess I thought that she could just tell them when I wasn’t there (hospitalized), when it was just my wife and the kids at home. I kind of just assumed that she’d do a good job telling them.

Next, concerning seeing atypical expressions on their children’s faces, if their children were younger, when they came in to see their fathers at the hospital, they would see them hooked up to intravenous or electrocardiogram machines, and it was all very unexpected. This would cause them to cry, or to take on a quiet, pensive demeanor. These changes shocked their fathers. They believed that they had done a very bad thing to their children, that they had hurt them, and they began to think and act as if not exposing them to these changes was better.

The younger one was three at the time, and their shocked face when they saw me. . .I don’t think I’ll ever be able to forget that. They had a terrified helpless sort of expression. That expression still comes to mind, you know, sometimes. So I said that we probably shouldn’t show them stuff like that, and that when the situation would be too shocking for them, they probably shouldn’t come. I get visitors you know; so you don’t have to come, I said, even though I didn’t, obviously.

Concerning noticing changes in their children’s feelings or behaviors, for those with younger children, some fathers noticed their children being careful around them and their body, and those that were in their teens would display bits of kindness mixed in with their usual curt and blunt attitude. Those with adolescent children noticed changes in their children’s chosen paths in life, such as choosing to become doctors or deciding to go to cheaper schools. Though fathers felt guilty for being unable to pay their children’s school fees, etc., they had an opportunity to see their children grow as they watched them continue to strive and try to do their best. In contrast, there were times when they felt that their illness was having a negative effect on their children. These included children’s unpredictable behavior in kindergarten or elementary school, and when they abandoned their usual demands. They would do things like prevent them from knowing anything more about their illness or limiting their time together to prevent them from seeing their weakened state.

Having been hospitalized for the illness that I might die from seems to be a very significant memory for my child; so he started telling me that he wanted to be a doctor just about that time.

While I was in the hospital, my daughter was completely crazy at school. She was crying suddenly during class, getting out her anger, and missing and making a fuss. Oh, I thought I shouldn’t worry my daughter.

Even when faced with the aforementioned changes in their children’s behavior, almost none of the fathers approached their children on their own with questions. However, they continued to consider the effect their cancer was having on their children and felt a variety of emotions, including contrition, gratitude, and the desire to repay them, all of which prompted them to reevaluate their roles as fathers.

Noticing fathers and children need each other

What saved the fathers who had been thrown into difficult, painful circumstances by their cancers was their children. While in treatment, interaction with or care from their children gave the fathers a great deal of strength. This was not only limited to face-to-face meetings; looking at photos or speaking to them on the phone had the same effects. The side effects of cancer treatment limited the amount of time they could spend together. Because they were separated, things like pictures started to take on a sort of power.

I always put a picture of my daughter on the bedside (in the hospital), and when I asked for it, I was (crying), sorry. I think now. . .It was supportive.

I wanted to live as much as I could; so I decided to endure it. For my children.

Those who had young children would watch them ask to be carried or cry because they did not want to leave their side. These sights showed the fathers that their children truly did need them. Being needed and loved by their children gave the fathers both the strength to overcome their trying battles with their illnesses and also to restore their self-confidence in their fatherhood.

I couldn’t be together with them (for treatment). At that time, I found out that my children were very irreplaceable for me.

Mama anytime. I think mom is better than me, anyway. But when the child came to see me, she looked really happy and hugged me.

They were always closer to my wife; so I assumed they’d be fine even if their father wasn’t around. Realizing that that actually wasn’t the case was a new discovery for me.

This is probably a weird way to say it, I decided I’ll try a bit harder to interact with them better.

Placing more value on time with children than on work

The fathers went from living with work as their foremost priority to wanting to have time with their children as their number one priority and acting accordingly. This was the result of rethinking their roles as fathers, prompted by their experiences after being diagnosed with cancer, including the feeling that their time was limited, their contrition at making their children feel lonely, and their resolve to treasure their children. As these cognitive processes influenced and changed their behavior, fathers went from prioritizing work in the early stages of their illness to prioritizing family in the later stages of their illness. Realizing that they wanted to treasure the time they spend with their children was a big change for the fathers, many of whom had spent their time chasing profits at their jobs.

I think I only started thinking of my entire family as a whole after the cancer. Now that I think back, I guess I was self-centered; I was mostly concerned with doing things this way or that at work. My family was always second fiddle. But now, I realize, and I suppose everyone has their own important things in life, I realize that my family’s really important to me. Living happily with my wife and kids is my number one priority. My work used to be number one; but now it’s number two or three.

I didn’t have any contact with my children on weekdays; but after I got sick, I had to go back early because of the consideration of the company; so my children looked happy. After all, I think that I have more time to interact and my family’s ties have deepened.

In this way, the fathers’ changes and actions not only helped them realize the preciousness and happiness of spending time with their children; but also made them feel confidence that they were trying hard to address their children’s feelings of loneliness. Some fathers experienced changes in their emotions, and they were grateful for the experience caused by cancer.

I was bald (from chemotherapy). I think I was a dad who worked hard, even objectively. Even though it was painful, I was desperate to play with my child.

I don’t think an ordinary person can feel as happy next to a (child) as a father. This is thanks to cancer.

Being assailed by emotional turmoil that is difficult to handle alone

The suffering fathers could not handle on their own came from a sort of despair they experienced regarding being unable to escape their own death. Stage IV, poor prognosis, inoperable—concepts that intimate untreatable conditions—also played a role. Looking at the possibility that fathers’ lives might end in the blink of an eye is a difficult thing, especially when one is in the prime of one’s life. Vague, intractable, unreasonable negative emotions roil in the mind.

I: Do you feel that it’s not fair?

P: Of course. I mean, (cries, remains silent for 13 seconds). I’m sorry. When I look back, there’s the whole question of why this disease, and that’s where this feeling of unfairness started. There are people out there that can eat, sleep, and do what they want and live out their whole lives, but I’m here thinking about when I’m going to die, at an age far away from the average lifespan of a Japanese person, and if I just live the way I normally would, I’d probably die; so I have to get these treatments.

The ninth recurrence in a year was a shock. I feel like I am shaking my heart when the treatment is gone. I can see that this (cancer) is getting bigger and bigger. I’m doing ridiculous things, like running on a stolen motorcycle at night, impulsive, like a yell on the sandy beach. I cannot help myself; I cannot control it; I don’t know how to accept it.

Nurturing children like they would not be able to do in the future

Learning that their death is unavoidable and imminent caused the fathers to carry unknowable anxiety, regret, and fear. These findings are from fathers who had metastatic cancer and/or cancer recurrence. Knowing firsthand how little time they had left, fathers began to do now what they could in the hope that it will serve their children in the future when they are gone. A father who realizes that his death is unavoidable and will come in the near future thinks about what he can do as a father and how he should be. How do I leave? What can I do for my child? What should it be now? He looks back on his parenting so far.

I didn’t do anything like a dad, and if I wasn’t there, I thought some of my kids wouldn’t have an impression of their father.

The fathers discovered the kind of parent they wanted to be through introspection, and they began to behave accordingly. This included not only acting, but also the option of not acting; for example, minimizing their energy use and increasing time spent together. Fathers were motivated to act, even when it meant suppressing their own physical and psychological pain, to realize the image of fatherhood revealed through introspection, from a longing to be remembered, and from a deep love for their children that grew even greater after their diagnosis with cancer.

I want to remain in their memories. No matter what. I’m not at all afraid to die. My only fear is the fear that I could be forgotten by my children.

The fathers exhibited five patterns of behavior: legacy-building, communicating, teaching, staying close, and entrusting. Each father acted in various ways that reflected these behavior patterns. Legacy-building included actions like activities to make the world a better place, to leave behind a world that is easier for their child to live in; managing finances so their family would not struggle when they were gone; leaving a comfortable family environment for their child; or acclimating their child to life without them. Choosing not to return to the family home on purpose to accustom their child to that situation may seem like a strange behavior at first glance. However, in truth, fathers suppressed their own loneliness to act in the interest of their children, so that they would not experience a sudden change after their death. Other fathers wanted to leave behind a solid foundation from which their child could choose a good life, memories, or their personal way of living.

I mean, when I realized I don’t know how much longer I really have, I decided that I wanted to leave something about who I was, you know. And that came from, of course, thinking about what I should do in my day-to-day life, which is of course important. But leaving it behind as a well-formed thing, I thought that that would be important, and that’s why I’m doing what I’m doing now. (Afterwards, if my child learns of what I did) I’d hope they feel something, you know? I think that if I manage to make them feel something there, then maybe that’s how they can stay close to me.

I: What kinds of things did you do out of a desire to acclimate your children to it?

P: I didn’t go back to the house much. So that, as I expected, they could naturally get used to not having me there. But, of course, even though I said I wanted them to get used to it (me not being there) quickly, they would end up seeing the world as just the two kids and mom. It’s a good thing. Even though that’s what I wanted, I cannot enter that world since I was only there occasionally. I thought “huh?” But now I think it was strange to feel that way.

Communications included conveying love to their children. Some fathers shared this verbally, while others only experienced the feeling, even though they did not communicate it directly. They thought their children would live more passionately if they knew that they were loved by their fathers. They were planting a seed in the present that would grow into strength for their children in the future.

I just kept feeling, “Remember that I’m not indifferent (toward my child).”

I think being a parent means giving your child unconditional love. I think being able to properly convey this to your child is precious. I think that, as they live on, the fact that there was someone that truly loved them will give them confidence and a reason for existing. I’m trying to communicate that I love them no matter what.

Teaching included teaching their child about society as they understood it through their work; for example, talking to their child about the connection between the importance of studying and living in society, or being stricter about courtesy and etiquette.

After I got sick, I really talked my tongue weary about things like how to hold chopsticks, not to leave food on the plate, and not to look down on their mother. Since my wife doesn’t say much about those things. Aren’t they losing the person who will tell them those things? I want them to become people who can do basic things, common sense things, well.

People come to know society through work, and I think that one of the roles of parents is to teach children about the society. That is why I want to teach my children the meaning of what they are studying now, in connection with society.

Staying close meant valuing “normal” days spent with their children. The fathers appreciated their everyday lives and sought ways to extend their current situation as long as possible, sometimes choosing to receive treatment even though they knew that doing so would make them feel worse physically.

(Even though my condition has progressed, and daily activities are difficult) I think the best thing would be for the normal, ordinary days, ones that seem like nothing special, to continue like this.

Entrusting included asking their wife, parents, or in some cases their children, to take care of things so that the family could continue to do well after they were gone. Fathers asked their parents to provide support, including financial support, so that their wife and children would not face hardships. Some fathers passed on the role of husband and father to their son, who would be the only remaining male in the family. These actions were perceived as a part of fathers’ responsibility to take care of the future.

(I said to my son, daddy) is going to die. So, you’ve got to do your best. You’re the one who will support mom. Look after your little sister. I thought those words would be sure to remain afterwards. Yet saying that to my child was more for my own reassurance than I expected.

I can’t be sure I’ll see it through, so I’m leaving it to you (to the wife and child). I said, you can handle it, so I’m leaving it to you.

Advantages of taking these actions included being able to see themselves positively, as fathers who are trying their best for their children or who are helpful to their children even amid the pain of no longer being who they thought they were, putting things in order before they pass away, feeling that they had left behind a little bit of themselves in their children, and feeling reassured that they had been able to communicate the things they needed to. Simultaneously, the fathers felt alone, as these actions required them to think about a future where they are not around.

Discussion

The current findings described the process by which Japanese fathers with cancer experience changes in their perspectives on fathering. After being diagnosed with cancer, fathers confronted and considered aspects of fatherhood about which they were previously unaware, even when they were well. As a result, their self-awareness of their role as fathers increased, and they began to value that aspect of themselves. This chain of events involved the following process: one’s identity is severely challenged after being diagnosed with cancer, interactions with one’s children and reflection, changes in values, and growth as a father.

After being diagnosed with cancer, fathers were no longer who they once were. Their self-image had been severely challenged by several factors, identified as, first, changes in work and income, such as losing one’s job or going on leave and seeing a reduction in income; second, the experience of weakening of the body and mind, both of which used to be strong; third, the transformation from being the protector of children to becoming the protected, or to be in a position of hurting children.

Changes in work and income effectively meant changes in fathers’ role as breadwinner and their social status. Participants were troubled because they were not fulfilling their role as a father owing to their loss of income; even when they kept the job, treatment and hospitalization costs reduced their income. It has also been argued that the breadwinner provider role remains central to men’s constructions of fatherhood, and it continues to be underlined by current policy (Ogata, 2011; Townsend, 2002). The ability to provide remains a central aspect of successful fatherhood, subsequently raising potential challenges for men who experience unemployment (Kaufman, 2013; Olmstead et al., 2009; Shirani et al., 2012; Townsend, 2002). Even though a new type of father is becoming the ideal in Japan, one that can balance their work and home lives, the traditional ideology of “women take care of the home and children, and men the work” remains considerably persistent in the national consciousness (Ogata, 2011). Men feel far more responsible for taking care of their family’s financial needs as earners, and it has been noted that the birth of a child only increases men’s sense of this responsibility (Onodera & Kashiwagi, 1997). Even though they had been diagnosed with cancer and they were raising children, these men believed that earning a salary was one of their biggest responsibilities. Being unable to fulfill this responsibility was tantamount to losing their identity as fathers and caused these men to become depressed. This pattern has been recognized in research conducted outside of Japan as well (Elmberger et al., 2002; O’Neill et al., 2016). It appears to be an ideology shared by fathers with cancer across history, cultures, and national borders. Previous studies have explored the notion of unemployment as a crisis of masculinity (Haywood & Mac an Ghaill, 2003). Fathers with cancer experienced a crisis of masculinity, as evidenced by their explanation that their market value has gone down owing to redundancy or their inability to work in the way they want to. Simultaneously, staying at home and in the neighborhood during the day brought about changes in their social status. Fathers felt people were unsympathetic to men in their prime walking around the town during the day; although, they were engaged with physiotherapy. Doucet (2006) and Shirani et al. (2012) reported difficulties related to spending their days in female-dominated spaces. The issue of work sheds light on challenges around fathers’ identity, caused not only by changes in income but also in social standing.

An important factor in men’s experiences of cancer as fathers was the loss of physical and emotional strength. Fathers used to take their health and strength for granted before their diagnoses, and they found it difficult to accept changes in their appearance and the feeling of vulnerability brought about by cancer treatment and its side effects. Men often regard strength and health of the body and mind as representative of their masculinity; for men, physical activities also represent their connection to society, and a healthy body is vital for men (Robertson, 2006). Assuming that men base their activities on physical strength, the collapse of their physical strength is regarded to exert a major influence on their mental health, which has already been weakened by cancer.

Fathers’ transition from protector of their children to a position where they needed to be protected, or were even emotionally damaging their children, destabilized their identity. Previous studies found that fathers define themselves as protectors of children (Brussoni et al., 2013; Creighton et al., 2017); the fathers in our study were deeply distressed that they, the protectors, grew weak and pale owing to their treatment. They were also distressed because they felt they were hurting their children when their children cried upon seeing them in treatment. Furthermore, once they had interpreted their presence as having a negative effect on their children, fathers decided to keep their distance from them by limiting the time they spent with them and not sharing information about their cancer with them. Constructions of masculinity bear relevance to fathering in relation to child safety efforts. The notion, for instance, that fathers function as “protectors” is consistent with dominant masculine ideals of strength and control (Allen & Daly, 2005; Doucet, 2004; Summers et al., 2006). Keeping distance from children so as not to show their true state relates to their need to protect their children, as well as their desire not to be hurt any more in the confusion over masculinity brought about by the reversal of their roles.

All these methods resemble behaviors taken to protect one’s children that have been discussed in previously published research (O’Neill et al., 2016), and they have been surmised to be characteristic male behaviors. According to Stryker (1987), internalized gender role expectations mean that individuals have as many identities as roles played in distinct sets of social relationships. In a study of men’s perceptions of their father role identity, Olmstead et al. (2009) identified seven role identities within the father status. Of them, the provider role was one of the most prominent father identities, and fathers with cancer experience challenges to all aspects of their identity including that of provider, which they feel to be most important, as well as protector, supporter, and caretaker.

For fathers with cancer whose sense of identity had been shaken and challenged, children occupied a special place. When their treatment grew so painful as to cause them to want to give up hope, fathers thought of their children and how they did not want to die. Because they were feeling they were different from before, and because their identity as a father was under attack, they could start reconstructing themselves through interactions with their children. According to Marsiglio and Cohan (2000), “Both the persons with whom a father is interacting (e.g., the mother, a child, a social service agent) and the scale or mode of evaluation they employ affect how a father is appraised. In turn, these appraisals are likely to affect how a man thinks and feels about himself as a father, particularly when he is emotionally attached to the others or is subordinate in some sort of power relationship with them.” Positive responses gained from interactions with their children, whose presence was enhanced for fathers after having cancer—such as their kindness and care, the fact they needed their father, the realization that they acted in the interest of their children, and were working to derive beneficial consequences for their children—helped fathers review changes in their notions of fatherhood from a new point of view, and to accept their transformed identity. These changes can be seen in how fathers began to care more for their children, adopt a more active attitude toward parenting, and grow as fathers.

Kashiwagi and Wakamatsu (1994) described six dimensions of parental character development: flexibility; self-control; acceptance of fate, religion, and tradition; widening of one’s perspective; purpose in life; and personal strengths. They hold that, in each of these aspects, mothers display more pronounced development than fathers. However, after receiving a diagnosis of cancer, fathers displayed development in many of these areas. Before they had cancer, fathers overcame almost anything through stamina or strength; but that no longer was possible: they had become weak. They learned that their lives were finite, and by facing that idea through the pain and interacting with their children while combating their illnesses, they realized both their children’s value and their own significance as fathers. By going through experiences that healthy men of their age would never dream of, they grew far more rapidly than fathers that followed a more gradual trajectory. This process of self-realization and growth as fathers was accelerated via interaction and reflection with their children, which grew richer as fathers drew closer to their terminal stage. Fathers who experienced metastasis, recurrence, or any other circumstance in which a radical cure would be impossible felt an unshakable sense of regret. Having the end of their life abruptly thrust before them after somehow making it out of their painful battle with illness, and as they latched onto their joy and reason to live as fathers, surely caused fathers ineffable grief. It is useful to encourage men to reflect on what they value and how they come to feel that way to raise their awareness as a father (Marsiglio et al., 2000). Having cancer and facing death naturally provides fathers with an opportunity to reflect on themselves and continue to change and grow as a father. Many men begin to develop their identity as a father before they have children (Marsiglio et al., 2000). The fathers’ experiences in this study showed that this trajectory persists until the last day of life.

Implications for Nursing

Fathers had to deal with their severely challenged self-image brought about by three changes: problems with work and income; the weakening of body and mind; and the reversal of their position, from the protector of their children to becoming the protected, since their diagnoses. In addition, in the terminal stage, they had to deal with difficulties in continuing to nurture their children while feeling desperate. Here, we examine what nursing can provide to fathers facing such difficulties.

First, nurses can connect fathers to necessary support or patient groups. Regarding work, 34% of workers in Japan either retire of their own volition or are dismissed after developing cancer, and 13% of self-employed persons close their businesses (Ministry of Health, Labour and Welfare [MHLW], 2004). This shows the difficulties fathers face when receiving treatment while holding down a job. Considering this, along with the importance fathers place on their role as breadwinner or provider, nurses should support fathers so that they can continue receiving treatment without quitting their job, and refer them to organizations such as in-house cancer support centers that help fathers with work-related problems. Referrals to patient groups may also be useful, as engagement with fellow patients with the same experiences has many positive effects such as learning how others have overcome their challenges and a sense that they are not alone (Yalom & Leszcz, 2005). In Japan, there are sites where patients with cancer with children can socialize, such as Cancer Parents (https://cancer-parents.com/). There are other support groups such as CLIMB (Kobayashi et al., 2017), which started in the U.S. Support and resources inevitably vary from country to country and from region to region; however, if the nurse knows where to refer patients and be prepared to issue a referral, it may help patients overcome a difficult phase.

Second, nurses should make sure fathers can interact with their children while receiving treatment. Interactions with children was vital for fathers in their attempts to rethink and reconstitute themselves, regardless of the stage they were in. Simultaneously, children can be a source of strength to help fathers persevere through difficult treatment. We found that, when face-to-face interaction was not possible, video calls and exchange of letters can be of enormous help, and such efforts should be maximized. One of the points nurses should consider regarding the interaction between fathers and children is fathers’ tendency to keep some distance from their children. Fathers chose to distance themselves from their children when they felt they were having a negative impact on their children, or when they could not maintain their own ideal of fatherhood. It is hoped that nurses would develop a deeper understanding of fathers and provide support by helping fathers prepare for their children’s visit. Positive paternal influences are more likely to occur not only when there are supportive father–child relationships, but also when the father’s relationships with their partners, ex-partners, and possibly other children, establish and maintain positive familial conditions (Lamb, 2010). We posit that the family environment is often as important as individual relationships within the family.

Finally, fathers strived to continue being fathers as long as they can. Nurses should understand their thoughts and feelings and respect their desire to continue being a parent for as long as possible. Nightingale (1974) states, “My dear sister, there is nothing in the world, except perhaps education, so much the reverse of prosaic—or which requires so much power of throwing yourself into others’ feelings which you have never felt.” Fathers may be unable to share their vulnerability with others, and they may be struggling alone. Nevertheless, they want others to listen to what they have to say. Endeavoring to understand the experiences of fathers with cancer and remaining by their side as a warm presence is the first step to providing care for them.

Research Limitations and Future Issues

We did not limit the participant pool to fathers with a particular type of cancer; a variety of fathers of differing backgrounds were studied. Participants from various backgrounds, including living environment and occupation, were surveyed. Therefore, this study focused on the common experience of fathers and we did not analyze individual differences by cancer type. Further, differences in experiences related to the age of the child have not been explored. Because the opinions and thoughts of fathers’ spouses and children were not collected, the experiences presented here are, in a sense, unidimensional. Further, the study did not include theoretical sampling and a search for negative cases as is typical in grounded theory studies. Nevertheless, experiences shared by fathers with various types of cancers, and by comparing these with the experiences of fathers around the world, the commonalities that transcend historical and cultural boundaries were identified. In the future, the spouses and children of fathers with cancer must also be involved to develop a more complete family picture; and the influence of children’s ages, types of cancer, and fathers’ social background on fathering experiences must also be explored.

Conclusion

Our analysis revealed the progress of fathers through their experience of having cancer, through the changes they had experienced, their perceived death, and interaction with their children. When they were diagnosed with cancer, fathers experienced changes in work and income, weakening of body and mind, and transition from their position as protector of children to becoming the protected, posing significant challenges to their sense of identity. During this process, fathers started reflecting on fatherhood, which they had not given any attention to previously, through interaction with children and self-reflection. As a result, their awareness of being a father was enhanced and they started paying more attention to themselves as fathers and the kind of father they wanted to be. Even through the most difficult stages, fathers struggled to do their best, despite mental and physical difficulties. Nurses should provide support by referring fathers to appropriate support providers, by ensuring fathers can interact with their children while receiving treatment, and by understanding and respecting fathers’ emotional state.

Author Biographies

Rika Tamura, RN, MSc is a PhD student at the Department of End-of-Life Care and Oncology Nursing, Graduate School of Health Care Science, Tokyo Medical and Dental University, Bunkyo-ku, Tokyo, Japan.

Tomoko Yamazaki, RN, PhD is with the Department of End-of-Life Care and Oncology Nursing, Graduate School of Health Care Science, Tokyo Medical and Dental University, Bunkyo-ku, Tokyo, Japan.

Mayumi Uchibori, RN, PhD is with the Department of Home Care Nursing, Graduate school of Health Care Science, Tokyo Medical and Dental University, Bunkyo-ku, Tokyo, Japan.