Childhood cancer: Impact on parents’ marital dynamics

European Journal of Oncology Nursing 23 (2016) 34e42

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Childhood cancer: Impact on parents’ marital dynamics Fernanda Machado Silva-Rodrigues a, b, Raquel Pan b, Amanda Mota Pacciulio Sposito c, Willyane de Andrade Alvarenga d, Lucila Castanheira Nascimento e, * ~o Pauloe FCMSCSP, Sa ~o Paulo, SP, Brazil Faculdade de Ci^ encias M edicas da Santa Casa de Sa ~o Paulo at Ribeira ~o Preto College of Nursing, WHO Collaborating Center for Nursing Research Interunit Nursing Doctoral Program, University of Sa ~o Preto, SP, Brazil Development, Ribeira c ~o Paulo at Ribeira ~o Preto College of Nursing, WHO Collaborating Centre for Nursing Research Development, Clinical Hospital of Ribeira ~o University of Sa ~o Paulo, Ribeira ~o Preto, SP, Brazil Preto Medical School, University of Sa d ~o Paulo at Ribeira ~o Preto College of Nursing, WHO Collaborating Centre for Nursing Research Development, Ribeira ~o Preto, SP, Brazil University of Sa e ~o Paulo at Ribeira ~o Preto College of Nursing, WHO Collaborating Centre for Maternal-Infant and Public Health Nursing Department, University of Sa ~o Preto, SP, Brazil Nursing Research Development, Av. Bandeirantes, 3900, Monte Alegre, Ribeira a

b

a r t i c l e i n f o

a b s t r a c t

Article history: Received 5 March 2015 Received in revised form 27 February 2016 Accepted 6 March 2016

Purpose: To explore and analyze how marital relationships are affected by the crisis generated by the diagnosis and intensive regimens required in the treatment of children with cancer. Method: A descriptive study with a qualitative data analysis was conducted. In-depth individual interviews were carried out with 18 married biological parents of children with cancer. Data was analyzed using an inductive content analysis. Results: The following themes represented the couples’ experiences: (1) Abrupt changes after the child's diagnosis resulting in marital strain and need to focus on the present; (2) United but distant; (3) Exchanging roles; (4) Being parents all the time; (5) Focusing on the positive side of the experience; (6) Rescuing the marital relationship. The marital relationship of parents with a child/adolescent who has cancer may undergo either positive or negative changes, with intimacy and sexuality being negatively affected by the disease. Although the relationship may be more fragile after the illness, increased mutual commitment was observed in some couples. Conclusions: Results indicate that health professionals should include parents as an important focus of their care. The establishment of solid bonds to enhance couples’ communication is recommended as a way to provide anticipatory guidance to address the identified changes in marital relationships. The opportunities for dialog and partnership help couples to target their needs and recognize their strengths in order to mitigate the impact of a child's illness. © 2016 Elsevier Ltd. All rights reserved.

Keywords: Cancer Child Spouses Family relations Pediatric nursing

1. Introduction The diagnosis of childhood cancer initiates a difficult and painful experience for families, who are confronted not only with difficult decisions and information inherent to cancer treatment but also their own feelings and insecurities (Bally et al., 2014; Rosenberg

* Corresponding author. E-mail addresses: [email protected] (F.M. Silva-Rodrigues), [email protected] (R. Pan), [email protected] (A.M. Pacciulio Sposito), [email protected] (W. de Andrade Alvarenga), [email protected] (L.C. Nascimento). http://dx.doi.org/10.1016/j.ejon.2016.03.002 1462-3889/© 2016 Elsevier Ltd. All rights reserved.

et al., 2014; Svavarsdottir, 2005). Living with a chronic disease such as cancer with its peculiarities and demands of frequent and long hospitalizations, separation from the family, and aggressive treatment with adverse effects can lead to a series of manifestations including anxiety, fear, guilt, anger, and suffering that are common to all family members. The adjustments to the disease lead family members to change their lifestyle and adapt to the treatment's demands (West et al., 2015; Long and Marsland., 2011; Elsen et al., 2002). The disease's impact entails increased care needs, changes in social interactions, and reassessment of the family functioning (Bally et al., 2014; Hopia et al., 2004). Moreover, financial problems and emotional instability resulting from the presence of cancer can lead to estranged family relations, including the parents' marital

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relationship (Rosenberg et al., 2014; Syse et al., 2011; Lavee and Mey-Dan, 2003; Steffen and Castoldi, 2006). Although there is considerable evidence to support the repercussions of a child's chronic illness on the parents' marital relationship, few qualitative studies discuss specifically the marital dynamics of couples who are parents of children with cancer (Da Silva et al., 2010). It is observed that most studies remain focused on the experience of each parent (Chesler and Parry, 2001) or include fathers and mothers of different children (Brody and Simmons, 2007; Lavee and Mey-Dan, 2003). According to a recent study, researchers tend to provide incomplete information about the approach used to conceptualize the family domain of interest; authors usually operationalize “family study” by specifying the inclusion of a family-related variable or quantitative measurement of family functioning instead of generating knowledge about the intersection between family life and childhood chronic conditions (Knafl et al., 2015). Most of the studies focused on marital relationships during the experience of childhood cancer have been quantitative, measuring and explaining variations in marital functioning (Da Silva et al., 2010; Fincham and Bradbury, 1987; Hentinen and Kyng€ as, 1998 and Syse et al., 2010). There is enough quantitative evidence (Dahlquist et al., 1996; Goldbeck, 2001; Hoekstra-Weebers et al., 1998 and Yeh, 2002) of distress and negative changes in couples’ relationships after their child is diagnosed with cancer; however these aspects are not necessarily associated with increased divorce rates (Syse et al., 2010). Factors such as marital adjustment, communication, and conflict resolution strategies are important in the process of raising children and influence the quality of relationships between parents and parents and their children (Hendricks-Ferguson, 2000). Studies' results suggest the importance of considering the psychological status of the marital unit, and of each individual, over the course of the child's illness. Furthermore, children whose parents are distressed tend to be more distressed themselves (Robinson et al., 2007; Dahlquist et al., 1996). Parents tend to be the most important and present persons in the child's life. Therefore, the marital relationship experience of parents in the course of their child's disease needs to be understood because it may not only provide relevant information for pediatric oncology nursing but also be beneficial to other healthcare providers. Hence, this study explored and analyzed the repercussions of childhood cancer on the parents' relationship.

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consensual marriage relationship, living in the same household at the time of diagnosis, and both are agreeing to participate in the study. The children-related criteria were: children must be diagnosed with cancer and undergoing treatment for at least six months for parents to be eligible to participate. Parents of children in end-of-life care were excluded. We interviewed both parents, however individually, because the literature data suggests that the inclusion of the perspective of only one parent in studies that are designed to evaluate marital relations must be avoided because this approach compromises the couple's mutual perspective of the situation, which is necessary for an unbiased evaluation (McCubbin et al., 2002; Ow, 2003). Knafl et al. (2015) suggest that the well-being and functioning of individual family members are represented in a study only if they can be linked to results about other family members. Therefore, we preferred to include only couples in which both spouses could participate. Parents who were accompanying their child/adolescent during their hospitalization were invited to participate. Authors also invited parents during daily hospital visits, as both parents were not with their child/adolescent during hospitalization. Only couples who were willing to participate were interviewed, and all parents readily accepted the invitation to take part in the research. The literature review of studies that reported appropriate and common methods used in research involving couples suggests that couples can express themselves clearly and expose confidential information without constraints when the individuals are interviewed separately (Duman et al., 2007). The mothers' ages varied from 24 to 46 years old and the fathers’ from 25 to 50 years old. The parents' education level was mostly at elementary and secondary school level. The majority of mothers worked outside the home (N ¼ 6). The length of experience with childhood cancer since the diagnosis varied from six months to three and a half years. Only two couples were from the city where the study was conducted; the remaining participants came periodically to the institution for hospitalizations or medical appointments. The children's age varied from 1 year and nine months to 10 years old. The most frequent type of neoplasm observed in the children was central nervous system tumors, particularly, Medulloblastoma (N ¼ 1), Primitive Neuroectodermal Tumors (N ¼ 1), and Gliomas (N ¼ 1). Other diagnoses included Leukemia (N ¼ 1), Lymphomas (N ¼ 2), Wilms tumor (N ¼ 1), Rhabdomyosarcoma (N ¼ 1), and Neuroblastoma (N ¼ 1).

2. Methods 2.4. Data collection 2.1. Study design A qualitative descriptive methodology (Sandelowski, 2000) was used, including in-depth interviews and inductive content analysis, to explore, describe, and analyze the impact of childhood cancer on parents’ relationship. 2.2. Settings The study was conducted in a public university hospital located ~o Paulo State, Brazil. in Sa 2.3. Participants Nine married couples who were the biological parents of children with cancer, and whose children were in treatment for at least six months, volunteered to participate in this study, totaling 18 participants. The inclusion criteria were: biological fathers and mothers of children with cancer who were either married or in a

An informed consent was provided and signed by all participants. The duration of the individual parents' interviews ranged from 50 to 60 min, and all interviews were audio recorded with the participants’ permission. The sessions were conducted in quiet and private areas of the pediatric oncology ward or the outpatient clinic. Although it was possible that the participating couples could separate or divorce during the study period, no marital separation or divorce occurred during data collection. The data was collected through in-depth interviews conducted by the first author. Interactions with all participants started with the following probe in order to give them the opportunity to express themselves broadly: Tell me how your relationship with your partner has been after your child's illness. Depending on the parents' response, the following questions were presented: What were the positive changes in your marital relationship that you observed after your child's illness? And the negative ones? Topics such as communication and intimacy were explored based on the participant's statements.

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The data collection finished when data was sufficient to answer the research aim by achieving informational redundancy or at the point that no new element increased the properties of the object under study. 2.5. Data analysis The interviews were translated verbatim, and an individual parent level analysis was performed. The data extracted from the interviews was analyzed using an inductive content analysis, driven €s, by the research question and the collected data (Elo and Kynga 2008). Initially, the transcriptions were read several times by the first and last authors, in order to obtain a consistent understanding of the parents’ post-diagnosis marital relationship experiences. Subsequently, transcripts were independently coded line-by-line to help the researchers to undercover underlying meanings. Original expressions that described the same concept were coded using the same font color to allow tracking similarities. Similar terms or expressions were grouped together; patterns of speech were identified and labeled. The units of analysis comprised either one single €s, 2008). meaningful word or an entire expression (Elo and Kynga All expressions concerning the focus of the study were identified as meaning units. Coding the data involved a lengthy and complex process with constant back-and-forth movements to group different registration units under common meaning units related to the aim (Moretti et al., 2011). Similar codes were connected together according to their similarities and differences, and €s, 2008). codes were assigned into sub-categories (Elo and Kynga Main themes were generated in the abstraction phase, and subthemes from the previous phase were assessed for overlapping or inconsistencies. Consistency was enhanced by the analysis of the first and last authors, both experienced in the field of qualitative analysis. 2.6. Ethical considerations The study was approved by the Hospital Research Ethics Committee. All participants voluntarily signed an Informed Consent before study start; they were informed that withdrawal from the study was available at any time. Participants were also assured that they did not have to share their experience about a certain issue if they were uncomfortable doing so. Each participant authorized the audiotaping of interviews. The participants’ identities were protected; each one was assigned a number between one and nine. 3. Findings All participants agreed that marital interactions were affected since the observation of first symptoms in their child and the seeking of health care. Obtaining information and diagnosis clarification were pivotal to parents because these couples were experiencing anxiety, uncertainty, and difficulties to establish priorities and discern the following steps dealing with the impact and changes resulting from the illness. The analysis resulted in the development of six interconnected themes: (1) Abrupt changes after the child's diagnosis resulting in marital strain and need to focus on the present; (2) United but distant; (3) Exchanging roles; (4) Being parents all the time; (5) Focusing on the positive side of the experience; (6) Rescuing the marital relationship. 3.1. Abrupt changes after the child's diagnosis resulting in marital strain and need to focus on the present After the cancer diagnosis, the couples faced the difficult task of establishing priorities and making choices. They took a number of

immediate decisions, most of them contextualized in the present, such as permanently or temporary leaving their jobs and moving, even to another city, to facilitate access to hospital care. Couples identified the first months after the diagnosis, and especially the first weeks, as the most difficult and delicate period for their marital relationship. This period lasted an average of six months from the first contact with the diagnosis including feelings of concerns about the child's suffering, insecurity, and fear of loss (Mother, Couple 1). The parents defined this period as the hardest one before they could assimilate and learn to deal with the reality imposed by the illness. For most of them, life turned upside down (Father, Couple 7). The time needed to accompany their children during hospitalizations and that spent on care obliged parents to postpone their life plans. In addition, relationships with other family members, including partners, were hampered by thoughts completely focused on the child's disease as emphasized by one of the participants: I lost the time for everything. I was very cold, it was all about her [child with cancer] and nothing for the rest [spouse, another daughter] as if there was only me and her (Mother, Couple 4). When referring to their expectations for the future, the couples cautiously present dreams and plans because they prefer focusing on the present valuing it more than the future: I don't make plans, I don't live for tomorrow. I tell my wife that I don't like anything projected. As mentioned, it was a disappointment; our life was planned up to a certain point. I told her: I never want to agree on tomorrow. So that we can only experience the present (Father, Couple 3). The couples' future perspectives are no longer related to plans and expectations but focused on the child's clinical improvement and, if possible, the cure. The partners, whether together or separate, look for their resources to cope with the adverse situations that the treatment imposes. After reflecting on the experience, remembering difficult times and having the opportunity to think about their marital relationships, the couples reported that hope was always needed to cope with the disease. They demonstrated that their expectations were focused on a cure and at least rescuing part of what was lost in their lives, which is no longer as it was before their child's illness, but “to return to life as normal as possible” (Father, Couple 2). 3.2. United but distant Parents come together to overcome the child's illness and treatment. However, they become detached from each other as a couple. The discussions, misunderstandings, and stress in the relationship became increasingly evident after the cancer diagnosis, and the participants were able to identify these changes towards their partners: stress (Mother, Couple 2; Mother, Couple 4) and lack of patience (Mother, Couple 7) were important elements for the distancing and increased tension between partners. The context of uncertainties and physical and mental burden and the treatment imposed made any dialog on the marital situation impossible: I was that focused, with my head that focused on knowing what he had [child with cancer] that I wouldn't listen to anything. It's as if I were floating, high. I was unable to capture anything of what he [husband] said to me and so did he [husband]. Because I didn't know what he had [child with cancer], I ended up getting even more frightened, scared him [husband] and we ended up

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fighting because of that. There's a point when you get tired, your mind gets tired, and you end up taking it out on everyone. He [husband] also gets very tired and we end up fighting” (Mother, Couple 4). It was observed that couples got distant from each other in different ways. The geographic distancing happened when one of the spouses had to stay in their hometown, and the other had to accompany the child during hospitalization. The couples also reported physical distancing when one of them stayed at the Support House, being with the spouse and the child only during a limited period each day. Relationship distancing also happened when the couple had the opportunity to stay together but was involved with the child's demands, which affected their marital relationship. The affective distancing was always linked to the geographical and physical distancing and affected not only couples who stayed together during the hospitalization, but also, couples who could not. Some couples stayed together during the day but were separated at night when one of the partners went to the Support House; the following mother expressed that she felt united to her husband on behalf of the child's illness and treatment but distant as his wife: In terms of the family we got closer but, in terms of a couple, we got more distanced, because it was a long period of distance. He [husband] stayed at home [the city of origin], to work; I was able to get a leave from my job, so I spent the whole time with our child (Mother, Couple 8). One of the participants expressed how difficult it was to remain separated from his child and wife in order to comply with the institutional guidelines for visiting times. Fathers complained about how difficult it was to cope with their wife's absence from home (geographical and physical distance) and how harmful this was to their relationships (affective distancing): Ah, it got complicated because she [wife] spends more time here [city where the treatment takes place] than at home. (…) It got a bit more complicated; it got more complicated [referring to the marital relationship] (Father, Couple 4).

3.3. Exchanging roles All participating couples reported that the changing of roles is one of the most noteworthy aspects in the experience of having a child with cancer. According to them, the diagnosis and demands entailed by the disease required a reorganization of roles. Couple 6 reported that the fact that the father spent more time with the child made him more attached to her; she, in turn, mainly turned to her father when having pain or fever. This greater proximity with the father turned him into a reference figure for the child and, therefore, the mother demonstrated some degree of guilt. Both, father and mother acknowledged that the child with cancer was more attached to the father: When I'm not at home, she doesn't sleep, she kept on calling me. There are only a few times she doesn't call “dad” instead of “mom”. I ended up being more of her “mother”, because of her [wife's] job too (Father, Couple 6). She [child with cancer] has a stronger bond with her father than with me. She prefers her father, they have more affinities. Usually, he [husband] stays longer periods with her because of my work (Mother, Couple 6).

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The above testimony reveals a paradigm change in which the father becomes the reference figure for the child; he starts to take up responsibilities expected from the mother while she is on the labor market and cannot give up her professional activities because she is the main household provider. This change in the father's role to being more engaged and directly involved in childcare made the mother from Couple 6 reflect on her role and about what society expects from her as a woman and as a mother, arousing feelings of guilt that interfered in the relationship with her partner as stated in the following testimony: He [husband] got upset with me because I couldn't attend all consultations, but when I could, I was there. Because I think the mother really has to accompany, all the more in his case [child with cancer], which was difficult for us. It stirred up our relationship a bit. Sometimes I felt guilty because I would like to be at the hospital, together, listening. Sometimes he [husband] used to blame me and I thought: “Oh dear, I should really be there, present (Mother, Couple 6). The situation was opposite in another couple, as the mother starts to inform her husband of the need to share the caregiving role because she feels tired and burdened with long hospitalizations, often necessary in the course of the disease: Sometimes I feel alone. I had already stayed there all week, then there was a holiday, he [husband] did not come. I felt really alone. And I said: “I'm tired. You're in your house, you're sleeping in your bed, you're eating your mother's food! (Mother, Couple 7). I wish I could be here, everyday, all the time … be present, but the hospital wouldn't let me do this, so I must accept. This is the first aspect; another aspect is that I have to work … Unfortunately, life goes on, we have bills to pay, so I must work (Father, Couple 7). Most of the fathers who participated in the study assumed responsibilities they had never experienced before, such as caring for other children and housework. Siblings of children with cancer also helped with housework and care for the sick child. In the testimony below, one of the fathers exemplifies this change in roles played during his daughter's disease experience: Despite having my sister and mother to help me, I wanted to do things by myself. So, I prepared food, when she (wife) was not at home. My oldest boy (brother of the child with cancer) washed dishes, cleaned the kitchen and cleaned the house. I even used to do my laundry! Life sometimes plays tricks on you, so you must be prepared (Father, Couple 5). He [husband] stayed at home, taking care of our other children, preparing food, and washing the dishes … He learned how to do everything! (Mother, Couple 5).

3.4. Being parents all the time Some symptoms and side effects are expected during the treatment such as constant episodes of fever, nausea, vomiting, fatigue, and correlated symptoms. These reactions are a source of concern for the parents and put them in a state of constant alert to be always there when the child presents any of these symptoms.

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Couples had to play a constant role as parents, which certainly impacted their marital intimacy. The following testimony presents the difficulties of reconciling frequent concerns regarding the disease and reactions to treatment, and the couple's intimacy and sexuality: We cannot have sex, after the chemo there are about ten days when the fever can come up at any time. So we're not in the mood. Everything changed after it was confirmed, even before. Before, when we did not know what he had, we already changed a lot, everything. Because for us to have a moment of pleasure and knowing that the child does not know what he has, that's not possible. So, we have sex, but it isn't normal as it used to be (Father, Couple 2). As observed in the excerpt bellow, physical tiredness is an aggravating factor to the deficit in the couple's intimate relationship and sexuality, in this case caused by the effort to work and recover the time absent from a job. In addition, the partner directly involved in the care for the sick child, an extremely exhaustive process, is physically tired: I used to arrive at night and the only thing I wanted to do was sleep. I used to put them [children] to bed and say: “I'm going to bed, I can't keep my eyes open (Mother, couple 7). Besides these factors that directly contribute to harm the couple's intimacy, other factors result from changes in habits towards the sick child such as constantly monitoring the child's health. Five out of nine couples mentioned that the child with cancer started to sleep in the parents' bedroom after the disease. This was sporadic for one of these five couples; however, it became a regular habit for the others. Similarly, although most parents acknowledged the negative influence of the circumstances on their sexual life, assuming that it is more difficult for men than women to cope with the changes in the relationship, they emphasize the importance of respect and mutual understanding: I could tell you there was no problem, there was, but it was small. It's all a matter of understanding, because you know how men are; men are like that! Women don't feel like it, he wants to. It's all momentary. It's all a matter of understanding, we understand, but it's not a reason to fight. Women are more shielded; sometimes she doesn't feel like it. We want it every day (Father, Couple 5). At the same time that the mothers expected loyalty from their husbands, they acknowledged their failure due to greater difficulty in getting back to intimacy and sexual activity, even when their child's clinical condition improved. All couples experienced difficulties in this area, but some had opportunities to reconnect during times spent together at home, during intervals between chemotherapy cycles, and when the child felt better and was less dependent on their care, as one of the fathers reported: He has some periods when we can stay at home during the treatment, so we try to reconnect as a couple (Father, Couple 1).

3.5. Focusing on the positive side of the experience Although the experience of having a child with cancer is loaded with challenges, positive changes were observed in these couples.

Some of them affirm that, even amidst the adverse circumstances caused by the disease, a positive balance could be identified in the experience. For some couples, the strengthening and encouragement to overcome difficult moments imply focusing on the positive aspects of the experience, such as closeness and the couple's union and mutual support to cope with the negative changes. In the testimony below, the father from Couple 3 and that from Couple 5 highlighted that they had always been very close to their wives, even before the child's illness and that the disease contributed to bringing them even closer: We got more united, we started to see things we didn't use to, more living, both I with her [wife], and with the child. We were already very connected; we got even more with this problem (Couple 3). The disease served to approximate us even further because we were already united and ended up connecting more (…) I have always supported her [wife], I have always told her that she is strong (…) (Father, Couple 5). The father from Couple 5 not only highlighted the enhanced union but also commented on the support he attempts to offer his wife and the perception of her personal traits disclosed during the experience. In addition, some couples added that greater union entails “increased love” (Couple 3), the valuation of small daily details (Couple 5), and the sharing of pain, joy, and victory (Couple 1). Another positive aspect of the experience of having a child with cancer mentioned by some participants was the opportunity to examine their values and priorities through a reflexive process by experiencing relativism about material plans and life projects. According to one father's testimony: Sometimes, we think that something is important; when a situation like this comes up, we see that it’s not as important as we thought. We establish projects, so many plans! We think of a house, a car, appearance towards friends. These things can pass, end. And health, we never make plans, that one day a child or another person who is important in our life can become ill (Father, Couple 2). For some couples, the child's clinical improvement is the main objective in their lives, and they wait for it with great hope. For one of the participants, the harmony in a couple should be even greater; it should be more directed at the child (Couple 1). This shows that the couple, despite facing difficulties in their marital life, establishes the means to build a partnership. This was possible based on the aspects that were strengthened after the child's diagnosis such as proximity, companionship, acceptance of the other's limitations, acknowledgment that the other person's needs cannot all be attended to, and that they need to be together to face the problems and challenges of parents with a child who has cancer. 3.6. Rescuing the marital relationship Among future expectations, the hope for a successful treatment as mentioned previously came with the perspective of improvement in the partner relationship. All couples who mentioned the losses in their marital relationships, caused by the disease, hoped that favorable results in the child's treatment will help them to reconsider the weakened aspects of their relationships and rescue their marriage with family support: I want us [couple] to get back to our former life, go for a walk, go out. We have to say: Mom, can you stay with him [child with cancer] this weekend? Because we're tired. (…) I think

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everything we've been through was worth it; we still have a great deal of life ahead of us. We can do everything we gave up during the treatment (Mother, Couple 2). For another mother, the marital rescue depends on the couple working together to recall what they went through during the child's disease and analyze together how they can minimize consequences for both. According to the participant, this can be achieved through “reorganization, by looking back on the experience,“ in order to “see what should be changed.” (Mother, Couple 4). Table 1 presents the quotations from both mothers and fathers for each theme label, which illustrate the couples’ experiences. 4. Discussion The findings of this study support that the child's illness leads to a changed focus in the couple's life, what Rolland (1995) compared to viewing the child and the chronic illness as a kind of centripetal force in the family system (Rolland, 1995). As reported in previous studies, marital conflicts began in the first weeks after the diagnosis (Hendricks-Ferguson, 2000; Steffen and Castoldi, 2006). In this period, the child usually becomes the family focus and the target of the couple's emotional, physical, and psychological energy (Khoury et al., 2013; Leavitt et al., 1999). Some testimonies reveal that as the child's well-being and cancer treatment start to determine the parents' thoughts and actions, the child becomes the center of the parents' lives; this changed focus culminates with the distancing between the two individuals in the couple, which supports the findings of other studies (Kars et al., 2008; Viana et al., 2007). The high levels of stress, anxiety, and constant concerns with the gravity of the child's illness contributed to weakening some couples' relationships. Each partner, due to his/her emotional weakness, externalized the whole burden of feelings and difficulties to cope with the situation towards the other, bringing up tension in the relationship. The child is spared, mainly because of the health condition, and the partner turns into a kind of escape valve, similar to what is described in another study (Steffen and Castoldi, 2006). According to our findings, different types of distancing can happen between couples during their child's illness. Geographical distancing happened when one of the partners stayed in their city of origin while the other was caring for the child at the treatment location. The communication with the partner becomes significantly impaired in couples experiencing this kind of distancing, which contributes to the intensification of earlier marital problems, lack of understanding, distancing, fights, and disagreements. Physical distancing was observed on those occasions when, despite being in the same town, fathers and mothers accompanying their child could not stay together, mainly because of institutional guidelines on visiting hours. Hence, although they were in the same physical space, the partners remained separated over long periods. Affective distancing resulted from the circumstantial geographic and physical distance, and it can happen to all couples, those staying together during hospitalization or not. The couple's distancing, whether affective, geographical, or physical, not only intensifies earlier marital problems but also contributes significantly to reduce intimacy and marital satisfaction. These findings are in accordance with similar data reported in the literature (McGrath, 2001; Steffen and Castoldi, 2006) in which couples indicate that the investment of physical and emotional energy makes parents spend less time on leisure and sexual activities as they experience the physical and mental exhaustion that results from concerns about the child. Other studies also report that these issues compromise couples' quality of life (Khoury et al.,

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2013; Lavee and Mey-Dan, 2003). Role inversion was another aspect of the study results that indicated important transformations in social functions attributed to fathers and mothers. This process does not happen smoothly though (Rodriguez et al., 2012). The women's new responsibilities grant them a new social and family role and increasingly distance them from their former roles as caregivers and as those who sacrifice on behalf of their children and family. This new context gives rise to feelings of guilt and abnormality, as the new roles are confronted by cultural values (Da Silva et al., 2010; Goldbeck, 2001). Caregivers lack different sources of support and feel isolated; the parent who stays in the city of origin to take care of the couple's other responsibilities, such as care for other children and maintenance of the house, also experiences isolation and solitude; this has already been described in studies with parents experiencing childhood cancer (Chesler and Parry, 2001; Khoury et al., 2013). Some participants expressed a desire to be present during treatments, accompanying their child and partner. In these cases, the solitude was minimized by the social interactions at work and visits to close relatives. The study results show that the observed changes in performing tasks are in accordance with those reported in the literature (Clarke-Steffen, 1997; Goldbeck, 2001; Khoury et al., 2013) in which fathers and other family members performed tasks, mainly related to housework, that mothers used to do. It was also shown that women are playing an increasingly important role in the job market, and men are undertaking an increasingly larger role in household tasks (Williams et al., 2012). As the result of role inversion, the exclusiveness, and specificity of tasks that each parent performs no longer exists. In some cases observed in this study, the formerly patriarchal context made room for the matriarchal one in which men are no longer the exclusive providers and are often incapable of providing for the family alone. Thus, the sharing of charges, responsibilities, and behaviors, which used to be attributed differently between husbands and wives, moved to what Foucault (1986) called “common existence”, that is, a shared life in marriage, in the presence of non-traditional roles. The added burden and responsibilities, as well as the couple's changing roles, are also reported in other studies (Khoury et al., 2013; Murphy et al., 2008). In one of these studies with Lebanese couples, fathers mainly talked about the financial responsibilities, whereas mothers talked about being tired and feeling guilty for leaving other children at home. An important and observed cultural aspect is the fact that the sharing and exchanging of different roles and chores are accepted in Brazilian couples while in Lebanese couples the financial responsibility is usually charged to men and the care for the children and household to women. In this study, the fathers have increasingly attempted to exercise their fathering roles, which represent the process of fatherhood through affective bonds moving beyond the strictly biological view. It implies the men's greater participation in daily family life, their affective approximation to their children, less unbalanced relationships regarding gender relations, and less authoritarian postures (Romanelli, 2003). The child's disease enhances the dynamics and distribution of men and women's tasks within the family, mainly in the context of social changes in which women take up the role of family providers or reference persons. Conversely, men take up roles that are focused on the care of children and household, gaining the freedom to demonstrate emotions and affection, which translates into the contemporary father figure that rests on a sensitive base without giving up the manifestations of manhood (Brody and Simmons, 2007; Rodriguez et al., 2012). Among the different changes observed in the marital relationships between fathers and mothers of children with cancer, the

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Table 1 Quotations illustrating theme labels. Theme

Couples' quotations

The child is seeing as a priority; couples had to make important I didn't have time to do anything else. I had plans to study but I Abrupt changes after the child's diagnosis resulting in marital strain choices such as leaving jobs, giving up studying, or moving to couldn't (Couple 4e mother). She (wife) didn't think about anything else, just about her (child other city. and need to focus on the present with cancer) … The most important think was our baby (Couple 4 e father). We can loose everything, but we want her (child with cancer) Couples had the opportunity to examine their values and priorities and put aside material plans and life projects. Couples healthy (Couple 2e mother). I don't make plans … I don't live thinking about tomorrow, as I say start focusing on the present and the child's well-being. to my wife, I live in the present (Couple 2e father). Now we are more united than ever … I don't know how is going to be in the future because now we just can think about him (child with cancer) getting better (Couple 3e mother). I tell my wife that I don't like anything projected. As mentioned, it was a disappointment; our life was planned up to a certain point. I told her: I never want to agree on tomorrow. So that we can only experience the present (Couple 3e father). The diagnosis of cancer and the changes that it imposed brought At first I became very angry, for example, I argued with him strains to the couples' relationship. (husband) a lot … I was angry all the time (Couple 3e mother). She (wife) became more likely to get angry. I was calmer. Sometimes she had a lot in her mind, I tried to take things away from her mind and support her (Couple 3e father). United but distant The most important aspect was the distancing between partners We talked on the telephone because he (husband) had his job. He also had to stay in our city taking care of our boys (child's siblings) that could be represented by geographic, affective and/or physical distancing or all of them. Couples felt united on behalf of (Couple 5e mother). I couldn't stay because I had to work. We also have two other boys the child's illness and treatment but distant as a couple. (child's siblings) that stayed with me. It was hard at the beginning, we stayed at home and she (wife) and our girl (child with cancer) here (Couple 5e husband). In terms of family, we were closer, but in terms of the couple, we became more distant. He (husband) stayed far from me for a long period. He had to work and I stayed all the time with him (child) (Couple 8e mother). She (spouse) usually stays with him (child), it was harder for her, I guess … Because she stayed in hospital for a long time, I came just in the weekends. It was hard. My will was to be here, but I had to stay at home alone (Couple 8e father). Exchanging roles Couples faced new responsibilities; they had to reorganize and He (husband) got upset with me, because I couldn't attend all share roles. consultations, but when I could, I was there. Because I think the mother really has to accompany, even more in his (child with cancer) case (Couple 6e mother). Actually, I was more a “mother” than a father because of her (spouse) work. I was his (child with cancer) company more than she was, whether working at night or during the day (Couple 6e father). He (husband) stayed at home, taking care of our other children, preparing food, and washing the dishes … He learned how to do everything! (Couple 5e mother). Despite having my sister and mother to help me, I wanted to do things by myself. So, I prepared food, when she (wife) was not at home … I even used to do my laundry! (Couple 5e father). Sometimes I don't feel like it's necessary (to stay with the child in the hospital) because his mother meets his needs. So, I leave, go to work, do my things, taking care of his brother … Because life goes on … (Couple 7e father). Sometimes I feel lonely, I told him (spouse). He could come not only to stay with him (child with cancer) but also to support me; I need to know that he is close to me, helping me … I need to breath, I told him (spouse) that he (child with cancer) needs me, but he also needs his father (Couple 7e mother). Being parents all the time The illness and its treatment demand parents being in a state of You become very tired, it's a physical and psychological tiredness, because of this illness (childhood cancer) and its treatment. This constant alert, which affected their intimacy. Moreover, the certainly worsens our sexual relationship (Couple 7e father). physical tiredness and changes in their habits intensified the It's like carrying the world on your back … this affected my deficit in the couple's intimacy and sexuality. Couples highlighted the importance of respecting and mutually relationship with my husband … I used to arrive at night and the understanding how to deal with these changes. only thing I wanted to do was sleep. I used to put them (children) to bed and say: “I'm going to bed, I can't keep my eyes open” (Couple 7 e mother). He (husband) always respected me, I always respected him, wherever I went, wherever I go … He also acts like that, he has always respected me (Couple 5e mother). I could tell you that there was no problem, but there was (related to intimacy and sexuality) … There was, but it was just a matter of understanding each other. Because man, you know … the woman doesn't want, he wants … This is not a reason to fight … It's a

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Table 1 (continued ) Theme

Focusing on the positive side of the experience

Rescuing marital relationship

Couples' quotations matter of understanding and respecting … I have never argued with her about sex (Couple 5e father). We became more united, we said to each other: “We are going to Despite the difficulties, couples get united and build a win”, we held hands and came up till here … (Couple 1e mother). partnership committed to fight for the child's clinical We became closer to each other, there is harmony, maybe because improvement. Proximity, companionship, acceptance of each of the problem (child's illness) that we were facing … we faced the other's limitations, along with the need and importance in establishing a partnership, was mentioned as aspects that were problems together (Couple 1e father). strengthened during the experience. Favorable results from the child's treatment will help couples to I want us (couple) to get back to our former life, go for a walk, and learn the positive aspects of the experience and reconsider the go out. We have to say: Mom, can you stay with him (child with cancer) this weekend? Because we're tired. (…) I think everything weakened parts of their relationships in order to rescue their marriage. we've been through was worth it; we still have a great deal of life ahead of us. We can do everything we gave up during the treatment (Couple 2e mother). After the end of this treatment, our relationship is going to be better than before his (child with cancer) illness. I hope we can rescue those things we couldn't do during the treatment, enjoy the good side of the relationship, intimacy, leisure activities, and spend more time together (Couple 2e father).

couple's intimacy and sexuality is an important area affected by the repercussions of the disease. Intimacy and emotional support are directly linked to the couple's communication and interaction, which are elements that the reality of the disease commonly impairs. Intimacy, trust, feelings of kindness, love, and physical affection represent important dimensions of a healthy marital union (Moore et al., 2004). The couple's distancing, whether affective, geographical, or physical, not only intensifies earlier marital problems but also contributes significantly to reduce marital satisfaction from intimacy. These findings are in accordance with the study results reported by Khoury et al. (2013) and Lavee and Mey-Dan (2003) in which couples indicated that the investment of physical and emotional energy required for caring for a sick child reduces time and energy available for leisure and sexual activities. Both men and women regret the lack of sexual intimacy with their partners, a situation hampered by the context of concerns, stress, and investments of physical and mental energy in the child's care. Moreover, for some couples, having the child sleeping with them became frequent, which certainly impaired their intimacy. Giddens (1993) explains that this matter is, even more, delicate for men than women because of men's greater concern with sex and their nature of isolating sexual activity from other activities in life. Therefore, it is difficult for men to cope with a reduced frequency of sexual activities or with sexual abstinence, even in times of crisis as, according to them, sexual life is detached from other aspects of life, and should, therefore, exist even in adverse situations. A relevant and observed aspect was that effective communication becomes an important resource by which partners understand each other's difficulties. It allows the couple to work together with mutual respect to finding ways to deal with changes and, when possible, with satisfaction for both. Effective communication contributes toward minimizing losses in sexual intimacy that are aggravated by the inconstant nature of treatment manifestations and the difficulties faced in trying to have some time alone when all strengths and internal and external resources are focused on the child's disease. Couples start to attach more value to the present when experiencing an uncertain reality. This change in the future perspective is in accordance with some studies indicating that couples attempt to live “1 day at a time”, as a strategy in the view of uncertainties. This resource helps them to reassess their values and beliefs about what is truly important and better prepares them for the choices to be made (Kerr et al., 2007; Khoury et al., 2013).

When couples refer to their future expectations, their child's cure is the main objective in life. Thus, they hope to count on support from family members for child care in order to have some time to dialog, understand, and reassess their relationship together. Parents rest in the hope and trust that they can defeat the disease; many of them look for the necessary strength in faith and spirituality. Studies (Cicogna et al., 2010; Purow et al., 2011) indicate that the experience of suffering is related to spirituality and leads the family to a closer relationship with a higher being they believe in, and to the focus on hope as a resource to overcome the afflictions during difficult times. The findings of this study corroborate with others that reported positive or negative changes in the marital relationship of parents whose child has cancer (Da Silva et al., 2010; Khoury et al., 2013; Schweitzer et al., 2012). Although the relationship can weaken, the child's disease can also enhance the couple's mutual commitment when trust and offering of support are preserved (Schweitzer et al., 2012; Steffen and Castoldi, 2006). The positive elements that were identified by the participants of this study, such as proximity and acceptance of each other's limitations, can enable parents to establish a partnership to overcome the crisis generated by the diagnosis of childhood cancer and demands involved in the treatment. 5. Conclusions This research was motivated by the need to understand a couple's experience in coping with a child affected by cancer, in the context of marital relationships, and as a way to offer support during nursing care and other health areas. In this study, most of the couples put their marital relationships in the background of their lives and, therefore, they were not thinking about analyzing their situation with their partners. All participants could identify that the relationship with their partner went through changes as the result of their child's illness. However, many had not thought about how to deal with these changes or how to work on shortcomings that affected communication, leisure, and sexuality. Some cultural differences imposed by the context of this study may be taken into consideration. The inclusion of parents living in a stable relationship, in the study design, entails limitations. Further studies should include structurally diverse families, for example, couples who got divorced after the child's cancer diagnosis or other types of relationships, such as same-sex unions, because they could

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have offered different perspectives on the subject. However, some types of structurally diverse families are still uncommon in the context where this study was conducted. Women frequently participate more in children's treatments than men. They fully give themselves to the mothering role, abandoning the role of wife. This study demonstrated the fathers' increasing involvement and the importance of their active participation in caring for the sick child. This study also suggests the importance of reflection by the nurse and other health team professionals on the marital relationship of couples who have a child with cancer. Couples must be able to cope with adversity together, a situation that may require rebalancing and exchanging responsibilities and roles between husbands and wives. Hence, it is important to continuously appreciate that the couples' healthy relationship positively contributes to the child's treatment. The establishment of solid bonds to enhance communication channels between partners and between couples and health professionals, as well as the identification of possible areas of shortage, are of utmost relevance to both a healthy and nurturing family environment and the child's treatment. Conflict of interest statement The authors have no conflict of interest to disclose. Acknowledgment and Funding (omitted for blinded review). References Bally, J.M., Holtslander, L., Duggleby, W., Wright, K., Thomas, R., Spurr, S., Mpofu, C., 2014. Understanding parental experiences through their narratives of restitution, chaos, and quest: improving care for families experiencing childhood cancer. J. Fam. Nurs. 28, 287e312. Brody, A.C., Simmons, L.A., 2007. Family resiliency during childhood cancer: the father's perspective. J. Pediatr. Oncol. Nurs. 24, 152e165. Chesler, M.A., Parry, C., 2001. Gender roles and/or styles in crisis: an integrative analysis of the experiences of fathers of children with cancer. Qual. Health Res. 11, 363e384. Cicogna, E.C., Nascimento, L.C., Lima, R.A.G., 2010. Children and adolescents with cancer: experiences with chemotherapy. Rev. Lat. Am. Enferm. 18, 864e872. Clarke-Steffen, L., 1997. Reconstructing reality: family strategies for managing childhood cancer. J. Pediatr. Nurs. 12, 278e287. Da Silva, F.M., Jacob, E., Nascimento, L.C., 2010. Impact of childhood cancer on parents' relationships: an integrative review. J. Nurs. Scholarsh. 42, 250e261. Dahlquist, L.M., Czyzewski, D.I., Jones, C.L., 1996. Parents of children with cancer: a longitudinal study of emotional distress, coping style, and marital adjustment two and twenty months after diagnosis. J. Pediatr. Psychol. 21, 541e554. spedes, Y.M., Fine, E., Otilingam, P., Margolin, G., 2007. Duman, S., Grodin, J., Ce Couples. In: Hersen, M., Thomas, J.C. (Eds.), Handbook of Clinical Interviewing with Adults. Sage, Thousands Oaks, pp. 340e357. Elo, S., Kyng€ as, H., 2008. The qualitative content analysis process. J. Adv. Nurs. 62, 107e115. Elsen, I., Marcon, S.S., Silva, M.R.S., 2002. O viver em família e sua interface com a saúde e a doença. Eduem, Maring a. Fincham, F.D., Bradbury, T.N., 1987. The assessment of marital quality: a reevaluation. J. Marriage Fam. 49, 797e809. Foucault, M., 1986. The history of sexuality. In: The Care of the Self, vol. 3. Pantheon Books, New York. Giddens, A., 1993. The Transformation of Intimacy: Sexuality, Love and Eroticism in Modern Societies. Stanford University Press, Stanford. Goldbeck, L., 2001. Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples, and quality of life. Psychooncology 10, 325e335. Hendricks-Ferguson, V.L., 2000. Crisis intervention strategies when caring for families of children with cancer. J. Pediatr. Oncol. Nurs. 17, 3e11. Hentinen, M., Kyng€ as, H., 1998. Factors associated with the adaptation of parents with a chronically ill child. J. Clin. Nurs. 7, 316e324. Hoekstra-Weebers, J.E., Jaspers, J.P., Kamps, W.A., Klip, E.C., 1998. Marital dissatisfaction, psychological distress, and the coping of parents of pediatric cancer

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