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Abstract

Caring for a child with cancer greatly affects fathers’ social lives, with fathers experiencing conflicts between work demands and their desire to be with their sick child. To date, fathers’ unique experiences of caring for a child with cancer remain poorly understood. This study aimed to understand the impact of a child’s cancer diagnosis on the social and work relationships of their father through in-depth interviews with 20 Korean fathers of a child with cancer within 5 years of the diagnosis. Thematic analysis yielded five themes related to how a child’s cancer diagnosis affected the father’s relationships at work and in social situations: (a) shifting priorities, (b) changes in work, (c) support and struggles at work, (d) not being social out of guilt, and (e) pent-up stress. Overall, the findings highlight that fathers experienced conflicting roles and constraints in social relationships after their child’s cancer diagnosis. This should be considered when developing and implementing social services for families with children diagnosed with cancer.

Keywords

children with cancer fathers social life qualitative

When a child is diagnosed with cancer, everything shifts for the family. The child requires intensive treatment, which disrupts the family’s lifestyle because parents structure their lives to meet the medical needs of the child (Long & Marsland, 2011). With an altered identity as a parent of a sick child (Schweitzer et al., 2012), parents go through a major life transition, affecting all areas of their daily lives, including professional (Chesler & Parry, 2001), occupational (Limburg et al., 2008; Wakefield et al., 2014), and social (James et al., 2002; Peikert et al., 2020) activities.

The family adjustment and adaptation response model (Patterson, 1988) is a constructive theoretical framework to understand how families change as they encounter a crisis that disrupts the entire family. According to this theory, families with chronically ill members attempt to maintain homeostasis through adjustment and adaptation. In the adjustment phase, family members attempt to meet new demands with existing capabilities. When a crisis (such as the child becoming sick) emerges, they go through adaptation phases wherein they make efforts to restore homeostasis by acquiring new resources or coping behaviors, reducing demands, or changing the meaning of the situation (Patterson, 1988).

Following their child’s cancer diagnosis, family members reorganize their roles and responsibilities to accommodate the child’s treatment demands (Long & Marsland, 2011). The sick child becomes the primary focus of attention, and the family adapts to prioritize the needs of the child with cancer over others (Nicholas et al., 2016). Because hospitalization often occurs far from the family’s home, the geographical and physical distance between the parents may result in decreased time together and reduced communication, which in turn, can lead to a lack of intimacy that negatively affects marital quality (da Silva et al., 2010; Silva-Rodrigues et al., 2016; Wiener et al., 2017). Furthermore, because mothers often devote themselves to caring for the sick child, fathers are overburdened with multiple responsibilities, leaving little time and energy left to function in other roles such as that of a spouse (Lavee & Mey-Dan, 2003; Young et al., 2002).

Fathers have reported that the most stressful aspect is managing work, family, and household chores during the initial diagnosis and treatment (Long & Marsland, 2011). Because fathers usually take the traditional provider role to financially support the family while mothers stay at the hospital during the child’s treatment (Clarke et al., 2009; Gibbins et al., 2012), fathers experience a great deal of stress managing their work commitments (Neil-Urban & Jones, 2002). Parental work disruptions may lead to reduced income and financial burden (Miedema et al., 2008; Santacroce et al., 2018), even after the child’s treatment has ended (Santacroce et al., 2020). Indeed, Bona et al. (2014) found that 94% of parents reported reducing their work hours, quitting, or losing a job due to their child’s illness. Those who continue to work may experience lower productivity and impaired concentration (Peikert et al., 2020). Supportive work environments exist, wherein the employer is understanding and coworkers take on added work and help out financially (Davies et al., 2004; Schweitzer et al., 2012). However, some employers do not always tolerate the father juggling medical appointments and work requirements (Nicholas et al., 2016).

Fathers experience conflicts between work demands and their desire to be with their sick child, creating difficulty balancing work and caregiving demands (B. L. Jones et al., 2010; Nicholas et al., 2016). Although some fathers use work as a coping skill to avoid the painful reality of the child’s cancer (Chesler & Parry, 2001), many fathers still significantly contribute to childcare even after working long hours. For example, Bennett Murphy et al. (2008) found that although fathers of children with cancer worked longer hours than those of healthy children, they still spent 4.5 hours a day on average attending to the family needs by accompanying the child to the hospital, caring for siblings, and doing housework.

Caring for a child with cancer affects parents’ social lives as well because they refrain from taking part in social activities due to limited time and energy (Peikert et al., 2020) or the fear of progression in the child’s cancer (Nicholas et al., 2016). Further, fathers tend not to value other relationships such as friendships as much as fatherhood (Robinson et al., 2019). Parents often have to give up recreational or social outings (James et al., 2002) and spend less time engaging in enjoyable activities in the 6 to 18 months following their child’s diagnosis (Wiener et al., 2016). Even after the end of treatment, many parents do not return to their daily social lives, focusing more on family than friends. Many parents report that friendships ended because their friends could not relate to the realities of dealing with childhood cancer (Peikert et al., 2020).

Despite the increased stress associated with childhood cancer, parents, particularly fathers, have few social outlets and lack opportunities to share their feelings (Nicholas et al., 2016). Because men are expected to be “strong” and the “rock” in their family in this society, fathers tend to suppress their emotions in an attempt to ensure other family members feel they can rely on them (Chesler & Parry, 2001; Nicholas et al., 2009; Robinson et al., 2019). Therefore, they find it difficult to reach out for support (Norberg et al., 2006). This is especially true for Asian fathers, who tend to be more patriarchal and avoid asking for help from others during a crisis related to the child’s cancer (Gray et al., 2014; Tseng & Verklan, 2008). With decreased social contact, however, these fathers may feel more isolated and unsupported (Chesler & Parry, 2001).

Evidence suggests that mothers and fathers experience different challenges while caring for a child with cancer (Chesler & Parry, 2001). Although studies have increasingly included more fathers, much of the research has focused on mothers’ experiences, which has resulted in interventions being developed only based on mothers’ experiences (Mullins et al., 2012). In general, fathers are underrepresented in pediatric research and have lower participation rates in studies involving parents of children with cancer (B. L. Jones et al., 2010; Phares et al., 2005). As such, fathers’ unique experiences of caring for a child with cancer remain poorly understood. Even less is known regarding fathers’ experiences in relation to social relationships in non-Western cultures. Investigating what fathers go through following a diagnosis of cancer for their child can help explicate how childhood cancer might affect them in ways that differ from mothers and inform interventions most suited to their needs. Furthermore, because the role of culture should be considered to provide culturally appropriate interventions when working with minority families of child with cancer, it is imperative to examine cultural influences on childhood cancer in Asian families (Thibodeaux & Deatrick, 2007).

This study explored social and work relationships among Korean fathers who have a child with cancer. The main research question of this study is: “How do fathers’ social and work lives change after their children are diagnosed with childhood cancer?”

Method

Participants

The present study included 20 Korean fathers whose children were diagnosed with cancer before age 19. Participation was limited to fathers whose children were within 5 years of their diagnosis. The children’s diagnoses were not included in the study inclusion criteria to ensure diverse cases that illustrate the comprehensive impact of a cancer diagnosis. Table 1 shows participants’ characteristics. Participants’ ages ranged from 32 to 49 years old, with a mean of 41.35 (SD = 4.49). Many of them (n = 15, 75%) were college educated, either 2-year college or 4-year university graduates. Less common were those with more than a graduate degree (n = 3, 15%) or only a high school diploma (n = 2, 10%). Twelve participants (60%) lived in metropolitan areas and eight (40%) lived a mid-size city or rural area. All participants were married and employed at the time of the interview, with 13 participants (65%) holding full-time jobs, one (5%) holding a part-time job, and six (30%) self-employed or working as freelancers. Most participants (n = 18, 90%) reported an annual household income of less than 5 million won, which is near the national median income for a four-person family in South Korea in 2021.

Table 1.

Participant Characteristics (N = 20).

Variables	n (%) or M (SD)
Age	41.35 (4.49)
Residential area
Metropolitan area	12 (60)
Mid-size area	5 (25)
Rural area	3 (15)
Education
High school diploma	2 (10)
Bachelor’s degree	15 (75)
Graduate degree	3 (15)
Household income
Less than 5 million won	18 (90)
5 million won or more	2 (10)
Employment status
Full-time job	13 (65)
Part-time job	1 (5)
Self-employed or freelancer	6 (30)
Child’s age	9.05 (3.68)
Child’s age at diagnosis	6.35 (4.08)
Child’s cancer type
Leukemia	13 (65)
Malignant lymphoma	3 (15)
Neuroblastoma	2 (10)
Brain tumor	2 (10)

Sixteen participants had more than one child, whereas four participants were parents of a single child with cancer. Their child’s age ranged between 3 and 18 years old, with a mean of 9.05 (SD = 3.68). Their age at diagnosis ranged from 1 to 16 years, with a mean of 6.35 (SD = 4.08). Their cancer diagnoses included acute lymphocytic leukemia (n = 13, 65%), malignant lymphoma (n = 3, 15%), brain tumor (n = 2, 10%), and neuroblastoma (n = 2, 10%).

Procedures

In-depth interviews were conducted in Korean by the second author, a childhood cancer survivor who has conducted many qualitative research interviews with childhood cancer survivors and families. The interviews, conducted from June to August 2015, were held either in person or over the telephone in Korean, depending on the participant’s availability in relation to work schedules. The second author conducted face-to-face interviews with two fathers near their workplace during their lunch break and telephone interviews with the remaining 18 participants after work. After providing an information sheet that included details of the study and procedures, the interviewer obtained written consent. Before the interviews, all participants were informed that the interview would be audio recorded and their confidentiality would be strictly protected.

This research was followed by a study focusing on mothers of a child with cancer. This research is part of a larger research project examining service needs related to parenting a child with cancer (Kim et al., 2016) and perceived changes in spousal relationships reported by fathers of a child with cancer (Kim et al., 2018). In this study, we used the fathers’ responses to open-ended questions regarding social and work relationships, such as, “How did your life at work and social relationships change after your child’s cancer diagnosis?” On average, the interviews lasted about 1 hour, and the protocol was approved by the Institutional Review Board of Myongji University in South Korea. To compensate them for their participation, participants received a $20 gift certificate to a bookstore.

Analysis

Interview data were analyzed using ATLAS.ti and followed a multistep process using inductive thematic analysis (Braun & Clarke, 2006). The steps included familiarization, generating initial codes, searching for themes, reviewing themes, defining themes, and writing the results. To ensure interrater reliability, the first and second authors, who share the Korean culture and language, read the transcripts numerous times to become familiar with the data and then independently coded the data before merging or grouping similar codes by comparing each other’s codes. Groups of codes were formed to create themes, and then the three authors thoroughly discussed and reached consensus on any discrepancies in the defining themes. For example, similar codes such as “not prioritizing job duties anymore,” “spending more time with sick child,” and “feeling neglected healthy children because they were sent to and live with their relative” were grouped in the theme of “shifting priorities,” defined as physical and emotional changes toward the family related to the focus on their sick child’s treatment. Korean quotes that best illustrated the themes were translated into English. The concepts for each theme were defined through discussions among the authors.

Findings

Five themes were identified: (a) shifting priorities, (b) changes in work, (c) support and struggles at work, (d) not being social out of guilt, and (e) pent-up stress. In every aspect of their lives, participants changed their priorities to focus on their child with cancer after their diagnosis. Fathers’ employment status and workload changed to provide spouses with more support and accommodate treatment schedules. These changes left few opportunities and little motivation for their social relationships, disturbed their concentration at work, and thus, led to stress.

Shifting Priorities

Fathers in this study used to prioritize their job duties and regularly worked late. However, that changed when their child was diagnosed with cancer, with many fathers shifting their focus to their family. Especially at the onset of treatment, the family unit underwent many changes, with mothers providing around-the-clock-care for the child and fathers doing extra work elsewhere. Instead of working late into the night, fathers would leave work early to spend more time with their child. The fathers’ presence also played a practical role because they had to support the mothers, who were tending to the needs of the sick child. For example, fathers spent time in school pickup lines, bringing their child to and from school. This left little time for the fathers to interact with their friends or coworkers unless strictly work related. As one father explained, “My life now revolves around my child. I cannot think of separating from my child.” With little time for friends or coworkers, the fathers’ social relationships became strained.

Fathers stated that they even neglected the sick child’s siblings so they could focus on the child’s treatment. Some sent their healthy children to live with their grandparents or other relatives. Others opted for family members to come live with them and take care of the siblings while the sick child was in the hospital. Fathers reported that it was not an easy decision, and they felt guilty about the neglected siblings and their relatives. Not only did the siblings lose cherished time with their parents and the sick child, but they also had to adjust psychologically to family situations and physically to a new living environment.

We sent our 10-month-old baby to my wife’s parents’ house, but they struggled to take care of the baby, so they put him in daycare. They said that all the baby did was cry. When I saw him, I said to him, “Baby, it’s your Dad.” Even though I hadn’t seen him in weeks, he immediately stopped crying and started laughing as soon as he heard my voice. I wasn’t sure whether to bring him home or not until I saw him, but then I knew right away that we had to. (Participant 5, 41-year-old father of girl with acute lymphocytic leukemia aged 5)

Worrying about the health of their sick child, fathers said they had neglected the needs of their other children and even their own health and well-being.

I don’t care about anything else at all except for my child with cancer and the other kids. Other parents often relax, but I don’t have the time to do so. I can’t think of anything else. I’ve been thinking about how I can make my child 100 percent better and what’s better for him and about the other kids. I have to take care of the other children, and I have to address the relationship between him and my other children because I’ve abandoned the rest of their education. (Participant 4, 47-year-old father of boy with acute lymphocytic leukemia aged 15)

Whereas some fathers were consumed with worry, others saw their mindset shift, realizing that nothing in life was certain. Although this can be intimidating, it motivated some fathers to live in the present and enjoy time with their families.

No one had cancer in my family or my wife’s family. . . . I just thought cancer was something you see on the TV. . . . After my daughter had cancer, I realized that I didn’t know what was going to happen to me, and that I could die tomorrow. So, I kept thinking about staying in the present. I shifted my focus to my family instead of my job or getting a promotion. (Participant 16, 32-year-old father of girl with neuroblastoma aged 3)

Changes in Work

Immediately after their child was diagnosed with cancer, all fathers said their thoughts went to their work lives and if they would be able to continue working. Some decided to change their work environments, and two fathers took a leave of absence from work. In one family, the mother took a 1-year leave from work, and when she had to go back to work, the father then took a 1-year leave to care for their sick daughter. The father reported that it was relatively easy for him to take leave because he worked for the government. He stated that it was the best decision that he had made because he was happy spending time with his child despite the challenges of being a caretaker.

Two fathers who could not balance their work and caregiving decided to switch jobs to ensure more flexibility in work time so they could balance work and caregiving. One father moved to another department at the same company to accommodate his caregiving needs, whereas others worked from home.

Both my wife and I quit our jobs to take care of our child with cancer. We weren’t sure if this was the right thing to do, but the only thing on our minds was saving our child. After we left our jobs, we were busy taking care of our child. We didn’t have time to think about other aspects of life like work or financial needs. We decided to focus only on our child’s treatment. When our child got a lot better, then I got a job as a photographer. (Participant 14, 43-year-old father of girl with brain tumor aged 10)

Before my child got diagnosed, I volunteered to work in one department where there was a lot of work. But I left there after my child’s diagnosis. I didn’t have a choice but to move to another department that was not as busy. It was upsetting to leave because I really wanted to work hard in that department, but I left there because it required working overtime and on weekends. If I stayed in that department, I would’ve had to take a leave from work. (Participant 9, 36-year-old father of girl with acute lymphocytic leukemia aged 7)

These changes in employment status left the fathers feeling anxious about their decision because they did not know what their futures held in terms of their careers. Frequently, fathers were torn between making more money and focusing on taking care of their child. One father, juggling not only his sick child but also a newborn, decided with support from his employer to work from home for 2 years:

I was obsessively focusing only on my child with cancer. After about two months since the diagnosis, the hardship finally sank in me. I’m a campus minister and meeting young people is my main work, but I couldn’t do it anymore. I had to stop focusing on my work, not because I didn’t want to work, but because I just didn’t have a choice. I am worried about the future of my career. (Participant 2, 34-year-old father of girl with malignant lymphoma aged 6)

Even if fathers wanted to stop working, they could not do so because they felt obligated to provide financial support, especially with expensive cancer treatments and associated expenses. Initially, they feared that their child would die, so they wanted to quit their jobs to spend as much time as they could with their child. However, when they realized that their child could recover and live, they decided to continue working. This was important because many mothers left their job or took leave from work when the child became sick. Sometimes, even after children recovered, parents still needed to ensure follow-up care and deal with the longer-term effects of cancer. As a result, many fathers could not quit their jobs. In fact, some thought that they had to work even harder to make up for their wife’s lost income and provide a better environment and access to treatment for the child.

I had no choice but to work. In fact, I had to earn more money. We were in a financially difficult situation, and when my child was diagnosed with leukemia, people around me told me that treating this disease would be costly and I would need to make a lot of money. (Participant 8, 46-year-old father of girl with acute lymphocytic leukemia aged 11)

My family had to live only with my earnings. I have three children. The older two children are also my precious children. Their lives are important, too. I just couldn’t ruin their lives because of the youngest child’s diagnosis. I wanted to find good tutors for my children and needed to make a lot of money for their education. (Participant 20, 44-year-old father of boy with acute lymphocytic leukemia aged 11)

Some fathers were left alone while the mother and child moved to a city near the hospital. Others who stayed with family had long commutes between their place of work and the hospital, leaving them with daily physical and emotional exhaustion.

I had to commute long distances, so I had separate housing near my workplace. I often sleep there when I work late, but I don’t like that. I want to spend more time with my child, and because of this, I’ve been thinking a lot about moving closer to my child. (Participant 20, 44-year-old father of boy with acute lymphocytic leukemia aged 11)

Support and Struggles at Work

Although some fathers had a difficult time with unsupportive coworkers, most agreed that support from their employer and coworkers was crucial to being able to continue working. For example, their coworkers allowed them to have respite and engaged in extra or overtime work for them.

When my coworkers heard that my child was sick, they were so supportive that I could go home early and do housework. When I told them I had to go home to care for my child, they were very understanding and accommodating of my needs. Whenever my child had major treatments, they collected money to support me. When your coworker takes days off for vacation, people usually don’t like it because it means you have to take on their work, but they let me take any time off whenever I needed it. (Participant 15, 39-year-old father of girl with malignant lymphoma aged 9)

Although coworkers and employers were understanding and supportive, the fathers still struggled to concentrate on work, especially when their child’s condition worsened. At times, they would get notified that their child was going to the emergency room or receive a call from their spouse to discuss important decisions about their child’s medical care. This left the fathers exhausted not only physically, but also from constant anxiety. This left little time for anything else in life, including afterwork gatherings, which are an important part of work relationships in Korea.

Sometimes it was stressful. One day, I had something important to do at work, but my wife called me and said that she needed me right away, so I had to leave work early and go home. When I got home, it turned out that it was not that urgent. It was just that my wife needed me because she was scared, but I got in trouble at work because of that. (Participant 18, 41-year-old father of boy with malignant lymphoma aged 10)

Not Being Social Out of Guilt

Most fathers withdrew from their social relationships because they often felt guilty when taking a break from caring for their child. Fathers first stopped attending unimportant gatherings or socializing dinners and did not arrange any future social gatherings. One father often asked himself, “Is it OK for me to feel relaxed in a tough situation like this?” Fathers compared the value of social relationships and family by asking themselves, “Which is more important?” and decided not to spend time on social relationships. One father explained, “I feel guilty about socializing with someone and having fun when my child is sick. So, I only meet people if it’s for work.”

“Can I take rest like this? I have to take care of my child.” I had these thoughts every single moment when my child was getting treatment. It’s hard to accept the fact that I’m resting and not taking care of my kid. (Participant 2, 34-year-old father of girl with malignant lymphoma aged 6)

Fathers said these changes were necessary for parents with sick children. One father reported that he purposefully tried not to think of what he was sacrificing, but instead thought that he was making the best decision to take care of his child and family. Another father stated that although he felt isolated from social relationships, he should not complain about it because his spouse was taking care of the child with cancer all the time.

It is not a long-term struggle, like for a year, three years, or four years. It is just a year and a half for my child’s chemotherapy. I’ve never thought of it as a loss. I think it’s the right decision for a parent to make. (Participant 1, 39-year-old father of girl with a brain tumor aged 7)

Other factors contributing to fathers’ social isolation included moving to a different city or school to address their child’s needs. One father decided to move to the countryside to send his child to a smaller school in a rural area so that the child could adjust better. He mentioned that his daughter struggled to develop social skills and advance to the next grade due to her long periods of hospitalization. It was difficult for her to socialize with new classmates who did not understand what she had been through. Therefore, the father decided to move to a smaller school where there was only one class in the grade. These transitions, although they benefited the children, left the fathers isolated from their social networks.

Pent-Up Stress

Because most of the fathers’ social relationships became almost nonexistent after their child’s cancer diagnosis, the fathers lacked social support and were often stressed out. Although the fathers said the extra time spent with their child was the most important thing, they still experienced stress and wanted to take a break. Others brought their child to their social meetings to balance spending time with their child and friends. However, the fathers rarely discussed their stress related to their sick child because they thought that others would not understand what they were going through or were afraid of looking pitiful.

I couldn’t talk about my struggles related to my sick child. I felt so small. I did have a friend who was sick, and after talking with him, I felt a bit better. (Participant 19, 44-year-old father of boy with acute lymphocytic leukemia aged 11)

Most fathers must be struggling in isolation. It’s not a situation where I can normally talk about it. I can’t talk about the details of what I am going through unless I’m with a really close friend. If I can tell someone what I’m feeling, I think I’d be able to relax a lot. (Participant 15, 39-year-old father of girl with malignant lymphoma aged 9)

Once their children recovered, participants hoped to restore their personal and social lives, enjoy hobbies, develop their careers, or pursue academic goals. However, many fathers whose children finished treatment and recovered from cancer still struggled socially and felt they could not relax. For instance, the only break that one father allowed himself was to watch TV with his spouse or stop by a café. These participants stated that their social life was not the same as before their children were diagnosed with cancer, but they had their personal life back.

Discussion

Implications and Recommendations

The present study sought to explore how fathers’ social and work relationships changed after their child was diagnosed with cancer. Whereas existing studies mainly focused on changes in the mothers’ lives, this study provided insights on the struggles of fathers, who are often excluded from research. As noted by B. L. Jones et al. (2010), the fathers in our study experienced unique stress and feelings in response to their child’s cancer. We identified themes that describe how a child’s cancer diagnosis affected the father’s social relationships and work changes. Consequences of these changes included stress and guilt associated with restricted relationships. Overall, the findings highlight that fathers go through significant changes after their child’s diagnosis, regularly make sacrifices for their family, and need support during and after their child’s treatment. These findings are consistent with the adaptation phase in the family adjustment and adaptation response model (Patterson, 1988), which describes how families attempt to restore equilibrium following a crisis. Fathers’ changes reported in this study can be seen as their adaptation efforts to meet the demands and strains caused by the cancer diagnosis. According to this model, maintaining family flexibility that allows for changing rules, priorities, and routines can help achieve family adaptation for fathers of a child with cancer.

In this study, the fathers changed their priorities from social and work relationships to their child. Prior to the diagnosis, fathers held roles consistent with the traditional Korean society, which emphasizes the importance of social and work relationships outside the family. Although traditional parental roles have been changing in contemporary society, fatherhood is profoundly influenced by Confucianism, in which roles are rigidly defined and expected and the patterns of fathering are considered different than mothering in Korea (Shwalb et al., 2004). Consistent with the literature (Bonner et al., 2007; Brody & Simmons, 2007), the fathers in our study voluntarily took an active role in caring for their child with cancer. As a result, the fathers built a closer bond with the sick child (Norberg & Steneby, 2009; Wiener et al., 2016) and engaged in more family activities (Hensler et al., 2013; Neil-Urban & Jones, 2002). Fathers’ role in the family, especially in taking care of a child with cancer, is changing, as demonstrated in this study. Such change needs to be recognized so their challenges can be understood in research and society.

All the families went through significant changes in family dynamics postdiagnosis, including becoming disconnected, sometimes literally and other times geographically. Consistent with the literature, healthy siblings were often separated to stay with extended family (Enskär et al., 2010; Nicholas et al., 2016; Norberg & Steneby, 2009), which often resulted in parents having inadequate time for healthy children (Patterson et al., 2004), decreased family time (James et al., 2002), and feeling guilty about not giving more attention to them (Peikert et al., 2020). The findings are consistent with the literature, which has highlighted how the family’s need to be physically together as one unit is often neglected during treatment (Van Schoors et al., 2020). Family separation with two subsystems of the mother and sick child and the father and siblings (Long & Marsland, 2011) seems to be inevitable, because parents desired not to leave a child who is being treated for cancer alone, but they also had to pay for living expenses and the child’s treatment. To address such a situation, external help and resources are needed.

Fathers in our study refrained from expressing their emotional challenges resulting from being torn apart from their child and family. They emphasized the necessity of the family separation and prioritizing the child’s cancer treatment, although they acknowledged the difficulty of the situation. Differences in coping styles between mothers and fathers also created strain (Patterson et al., 2004). Mothers tend to use emotion-focused strategies, whereas fathers often use cognitive problem-solving strategies (Clarke et al., 2009; Goldbeck, 2006; Pelchat et al., 2007). Many fathers said that expressing their worries may increase their family’s fear and thus, they need to “be strong” and mask their emotions (Hill et al., 2009; Neil-Urban & Jones, 2002). Fathers’ high levels of unexpressed stress (Masa’Deh et al., 2012) need to be seriously examined.

Fathers’ work situations also had to be accommodating to balance childcare and work, although the motivations and trajectories of fathers’ employment status and income after their child’s cancer diagnosis varied. In this study, some fathers took leaves of absence or moved to different departments to ease their work responsibilities. Because fathers held the main responsibility of providing financial support as the head of the household, they remained in their jobs, although they struggled with where to focus their attention. This is consistent with the literature regarding fathers of pediatric cancer patients that has highlighted conflicting role responsibilities between spending time with their child and maintaining their work to earn a living (McGrath & Huff, 2003; Robinson et al., 2019; Santacroce et al., 2020).

These changes ultimately limited the fathers’ social relationships both voluntarily (choosing to spend more time with family as opposed to friends) and involuntarily (taking a leave of absence from work, missing work socialization opportunities). No literature has discussed the specific impact of such work accommodations due to the changed childcare situation on fathers. Yet fathers, who could focus only on work before, now needed to balance work and life, and the literature on Korean women who have always had to do both work and childcare could offer valuable insight into understanding these fathers’ challenges in Korea (Cho et al., 2015). As existing studies (Çakar & Kim, 2015) showed, dining and drinking together after work is an important organizational socialization tool among colleagues that is essential for building networks and gathering information for promotions in Korea. Missing out on such social events means not only missing social enjoyment, but also being isolated from work opportunities and deterioration of their career. In addition to the work–life balance issue, paternal anxiety resulting from uncertainty associated with a child’s unexpected crisis (Mu et al., 2002)—for example, constant fear of cancer recurrence—makes it difficult for fathers to feel relaxed during work events and gatherings.

When fathers did spend time with their friends, they felt guilty for spending time with someone other than their sick child. However, reduced social interactions meant that fathers lacked social support to relieve stress. Men tend to have difficulty expressing feelings and consider their role in the family as financially and emotionally protecting their family members from facing negative consequences associated with childhood cancer (Brody & Simmons, 2007). Although support groups are helpful to decrease distress and promote empowerment of parents of children with cancer (Mok & Martinson, 2000; Racine et al., 2018), most are focused on mothers in Korea (Kim, 2005). Currently, fathers are excluded, either voluntarily or due to a lack of knowledge of existing services and support groups. Further, fathers are underrepresented in the pediatric oncology literature. Thus, father-to-father support groups would be a great resource for fathers to express their concerns openly and receive support as needed throughout cancer survivorship (J. B. Jones & Neil-Urban, 2003; Neil-Urban & Jones, 2002).

Limitations

This study had the following limitations in sample selection and data analysis. First, because this was a retrospective study, the findings relied on the participants’ memory. Thus, their actual experiences may be different than what they described from memory. Future studies should recruit fathers at different phases of survivorship, such as immediately after a child’s diagnosis of cancer, during intensive cancer treatment, and after cancer treatment, to gain a deeper understanding of their experiences throughout cancer survivorship. Second, fathers’ social relationships can be quite different depending on their type of employment and working environment. Because the fathers in this study held various occupations, it is necessary to examine the impact of these occupational characteristics on their social relationships using quantitative research with a more representative sample. Third, all participants except one were not currently the primary caregiver for their child with cancer, although some participants had experience as the main caregiver during their leave of absence from work. Fathers who are currently or previously were the main caregiver for their child may experience different role changes in their home and work life. Finally, this study focused on the fathers’ perspectives, which may be different than that of their spouse. Future studies should explore the perspectives of both parents and use the two narratives to compare parenting styles and overall life changes.

Conclusion

Childhood cancer brings many changes to fathers’ social relationships and work lives. Fathers go through changes in their employment status and as a result, in their income, but the most significant change is their role as a father supporting their sick child versus supporting other family members. These conflicting roles and constraints on social relationships should be considered with sensitivity when developing and implementing support services for families with children diagnosed with cancer.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by funding from the Korean Association for Children with Leukemia and Cancer. The second author acknowledges funding from the BK21 Four Program (Research team for the collaborative development of social services through social innovation) of the Ministry of Education and National Research Foundation of Korea.

An Ethics Statement

Ethical approval was obtained from the institutional review board of the Myongji university (MJU-2015-04-001-02).

ORCID iD

Min Ah Kim

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How Does Social and Work Life Change for Fathers of Children With Cancer?

Abstract

Keywords

Method

Participants

Procedures

Analysis

Findings

Shifting Priorities

Changes in Work

Support and Struggles at Work

Not Being Social Out of Guilt

Pent-Up Stress

Discussion

Implications and Recommendations

Limitations

Conclusion

Footnotes

Declaration of Conflicting Interests

Funding

An Ethics Statement

ORCID iD

References