“Motherhood” in the Context of Living With Breast Cancer

Abstract

Background: Breast cancer is the most commonly diagnosed cancer among women in Western Australia, with negative psychological impacts exacerbated for younger women. Many women survive 5 years following diagnosis, suggesting more young women and their families will be living with its ongoing effects for longer periods. Diagnosis and treatment impact a woman's identity as a mother, but limited research exists from the women's perspective.

Objective: The aim of the study was to explore the impact of breast cancer on the identities of young women as "mothers."

Methods: A qualitative research design using conversational in-depth interviews and guided by a social constructivist paradigm was used. In-depth interviews were undertaken with 8 young women who were living with breast cancer and had dependent children. Interviews were audiotaped, transcribed, and analyzed.

Results: Biographical disruption as described by Bury provided the analytical framework for interpretation of data. Four themes, "diagnosis and disruption," "maintaining normality," "continuing the mothering role," and "experiencing survivorship," reflect women's experiences of identity reconstruction in the context of living with breast cancer.

Conclusions: A breast cancer diagnosis precipitates complex changes in a woman's identity as a mother. A woman's postdiagnosis identity invariably integrates a changed prediagnosis identity and that of "breast cancer patient" and "survivor." The relationship between the 3 is dynamic and in constant tension.

Implications for Practice: Routine practice should include acknowledgement that an identity as mother exists alongside "patient." Questions to women about children and any concerns and issues they may have should also be routine.

In Western Australia, breast cancer is the most commonly diagnosed cancer annually among women 1 and a leading cause of cancer death for Australian women.2 Breast cancer is typically constructed as a disease for women in later life; however, 30% of women with a diagnosis of breast cancer are 50 years or younger,3 and approximately 6% are 40 years or younger.2,3 Despite the incidence of breast cancer being lower in younger women compared with their older counterparts, younger women are more likely have larger, more aggressive tumors and have worse disease-free and overall survival outcomes.4 The negative psychological impacts of breast cancer also appear to be exacerbated for younger women, particularly in relation to its impact on body image. For example, as the most visible site of femininity, sexuality, nurturing, and eroticism, breast loss is said to challenge a woman's identity as a woman5,6 and subsequently alter her body image.7-9 In addition, their emotional adaptation10-14 and the negative impact on family life also appear exacerbated.

With increasingly effective treatment available, more than 70% of women with early breast cancer will survive 5 years following diagnosis. For women with small tumors that have not spread at the time of diagnosis, this figure rises to about 90%.15 The improvement in survival rates suggests that more young women and their families will be living with the ongoing effects of breast cancer for increasing periods. A large number of women with advanced disease survive for many years, and their children may not recall a time in their lives when cancer was not a part of family life.

Despite the social changes of the past few decades, women continue to be the focus of family life,16 a role that is often accompanied by habitual privileging of family over self. Inevitably, the role of "mother" is challenged by a breast cancer diagnosis. Research on mothers with breast cancer and how their diagnosis affects family life is, however, limited, and the impact is usually examined from the perspectives of the family members, rather than the experiences of the mother.17-20

After a breast cancer diagnosis, the demands of illness and treatments are added to the usual burdens of family life for mothers, and women are often unable to fulfill their everyday parental roles. Thus, the internal structures of families are exposed to change.13,21 When facing breast cancer, the emphasis on being a "good" mother is altered because parental and family priorities shift, and focusing on the children may become difficult.22,23 In particular, hospital visits (separation) are disruptive to the mothering role,16 and many mothers feel that they are letting their children down because they are unable to give them enough attention. Thus, women are torn between their own and their children's needs for care,17,24and they become distressed when thinking about what might happen to their children without their presence, whether precipitated by illness or death.25 As such the impact of diagnosis and treatment for breast cancer can lead to changes in both roles and relationships-ostensibly changing a woman's identity as a mother.

Study Purpose

The purpose of the current research was to explore the impact of breast cancer on mothers' identities. Healthcare professionals, including nurses, could use such knowledge to tailor support to the needs of mothers. The research questions were as follows:

1. What is the impact of breast cancer on women who are mothers with dependent children?

2. Does breast cancer have an impact on a mother's identity and self-concept?

Analytical Framework: Biographical Disruption

Studies examining identity transformation for women in the context of illness tend to focus on the destructive effects of illness on women and, by extension, on their identities. Recent research (see, for example, Wilson 26) is more holistic and examines the interrelationship between illness and key sources of identity. Bury's27 work on biographical reconstruction provides a useful framework with which to explore the threat posed by breast cancer on a young woman's key identity as a mother.

Bury's 27 formulation of chronic illness as "biographical disruption" has been at the forefront of developments in the sociology of chronic illness.28 In contrast to earlier sociological approaches to chronic illness that drew on Parsonian "sick role" theory, Bury's formulation theorized chronic illness as a "disruptive event" or "critical situation"27,29 in which taken-for-granted features of life shift. These disruptions have physical, social, cultural, financial, and medical meanings and can affect feelings of self-worth and interpersonal relations.29 Recent adaptations of Bury's formulation highlight the importance of the timing and context in which illness occurs in accounts of biographical disruption. A breast cancer diagnosis at a young age-30 to 40 years-cannot be considered a "normal crisis"30-32 or one that makes sense to the person in terms of, for example, age.28,30 Thus, the notion of biographical disruption has salience for examining the stories of young mothers with a diagnosis of breast cancer.

Study Design

This qualitative study was underpinned by a social constructivist paradigm. This paradigm acknowledges that people's unique experiences are valid and explores the ways in which people view the world and construct meaning as they engage in everyday activities and interactions.33 From a social constructivist paradigm, multiple understandings of the world are legitimate, and there can be multiple readings of reality, which are defined and redefined through interactions with others.33

The study utilized a multiple case research approach 34 incorporating conversational in-depth interviews. An advantage of this approach is that it seeks both an understanding of the individual, as well as an understanding of the similarities and differences in experience and meaning between individuals.34 In this study, each woman's story reflected a unique vantage point on the issue under consideration whereby the categories of information and their interrelationships were developed and refined.34

Participants

The participants were 8 females (7 were married, and 1 participant was a single mother) with either current or nonrecurrent breast cancer. All participants were Australian, were English speaking, and resided in the Perth metropolitan area. At the time of their breast cancer diagnosis, participants ranged in age from 31 to 42 years (average, 35 years). Time since their breast cancer diagnosis ranged from 5 months to 7 years. Seven participants had 2 dependent children in the home, and 1 participant had 1 child in the home. Children's ages at diagnosis ranged from newborn to 8 years. Five of the women were required to have mastectomies as a result of their breast cancer, with 2 of those 5 women requiring bilateral mastectomies. Three women were required to have lumpectomies. In addition to their surgery, treatment consisted of chemotherapy and radiotherapy for 4 women, 2 women had chemotherapy only, 1 woman had radiotherapy only, and 1 woman was required to have no adjuvant therapy.

Recruitment and Procedure

Participants were purposively recruited through volunteer sampling. An information sheet was distributed to self-help groups, the Breast Cancer Foundation of Western Australia and the Cancer Council WA. Interested participants were asked to make contact with the researcher who provided further details about the study, answered any questions that potential participants may have had, and arranged a mutually convenient interview date and time. The participants were interviewed in their homes, with each participant engaging in 1 interview, with duration times ranging from 38 to 74 minutes (average, 52 minutes). Data saturation was reached after 8 interviews.

Data Analysis

Audio recordings of interviews were transcribed verbatim by the researcher. Interviews, continual immersion in the literature, and analysis were conducted simultaneously and informed each other. The coding processes recommended by Glaser and Strauss 35 and supported for multiple case research data analysis by Burgess-Limerick and Burgess-Limerick34 were adopted for this study. Initially, through an open coding process, the text was read several times with salient words, phrases, sentences, and passages highlighted in each transcript. As the analysis proceeded, these units of meaning were coded into substantive categories (descriptive categories that pattern the text), which facilitated the grouping of ideas. Memo writing and constant comparisons were used to work toward formal categories. All categories were then reexamined and refined. The coding process and category making were flexible to permit creative and intuitive thinking, to be responsive to the participants' texts, and to avoid producing unmanageable quantities of categories. Categories were then grouped together to examine and isolate meaningful patterns and processes, confirm associations between categories, and to derive specific themes. Case analysis meetings with all researchers were held throughout data analysis to challenge thinking, assist with the development of emerging ideas, and to alert the researcher to alternative interpretations of the text.34

Rigor

Rigor for the study was ensured through addressing the components of rigorous qualitative research outlined by Beanland et al,36 namely, credibility, auditability, and fittingness. A credible study is one where the portrayal of reality is faithful and plausible to those who have experienced it. In this study, credibility was ensured through continual immersion in the data before and during analysis, individually and as a team. Auditability-the provision of adequate information in relation to the development of the study and the interpretation of findings-is evident through listing passages of interview data with summaries and memos to show how data abstraction and reduction were conducted. Fittingness refers to the match between the findings of the research and the literature and was achieved by discussing the findings in the context of other research studies in the area and by using the literature to support or refute the concepts emerging from the data during analysis.

Ethical Considerations

Ethical clearance for the study was received from the Edith Cowan University Human Research Ethics Committee. As part of this approval, participants were advised that their involvement was voluntary and that they could withdraw without consequence at any time or not answer any question that they felt uncomfortable answering. Written consent to take part in the study as well as audio recording the interview was obtained from the participants prior to commencement of the interview. Audio recordings were erased following transcription by the researcher. Electronic transcripts were stored in a password-protected file with access available only to the research team. To ensure confidentiality at transcription, pseudonyms were given to all participants, their family members, and hospitals the participants attended for treatment.

Findings and Discussion

For the mothers in this study, a breast cancer diagnosis was a life-changing experience. In keeping with Bury's 27,29 biographical disruption framework, the themes are presented as follows: "diagnosis as disruption," "maintaining normality," "continuing the mothering role," and "experiencing survivorship." The intent is to provide an explanatory framework that allows women's experience to be better understood and the response to young mothers with breast cancer and their families improved. The 4 themes are not mutually exclusive.

Diagnosis as Disruption

Receiving a diagnosis of breast cancer was totally unexpected and not part of the plans of any of the young women in this study up until that time. The women described a range of responses to first hearing the news about their diagnosis including shock, disbelief, anger, fear, numbness, depression, denial, and confusion. In the words of Holly:

Of course the shock is probably the main thing you go through to start with I think, the sense of not really believing that it could happen, so from there it did feel very surreal[horizontal ellipsis]

Kate also described:

I think the first reaction was just shock and a bit of numbness, didn't really know what to do or where to go or anything like that.

This shock was also accompanied by feelings of a loss of control over everyday events and by feelings of guilt because the young women were no longer available for their children because of the debilitating adverse effects of treatment. Their identity as a mother was innately entwined with meeting the emotional, social, and physical needs of their children. As such, the inability to undertake their mothering role in the way they had prior to diagnosis caused considerable anxiety for the young women. As Michelle stated:

They [children] would always come and sit with me in bed, but I felt very guilty[horizontal ellipsis] that I wasn't available to them, and I think that was a lot of the sadness as well[horizontal ellipsis]Every time I'd look at them, I'd just cry, it was heart breaking[horizontal ellipsis] because I didn't know what the future held[horizontal ellipsis] and I just couldn't give them everything I wanted to[horizontal ellipsis] I had no energy, I was exhausted and sick, and I didn't have patience, I couldn't sit there and read them a story, I'd be gagging I just wouldn't be well enough to be there for them.

A diagnosis of breast cancer thus signified a major disruption to the biographies of the women. The unexpected nature of the diagnosis and its sequelae meant the woman's role as mother, as she had previously constructed it, had changed.

The findings from the current study are consistent with previous research that indicated that the physical impact of cancer (eg, fatigue and nausea) is particularly disruptive to the mothering roles of young women 16 and has an impact on the women's identities as mothers. The current study provides further evidence of the shock that mothers experience as they attempt to integrate and accommodate a construction of breast cancer as an "older woman's disease" into their lives as a much younger woman. It is not surprising that they experience great difficulty in accepting such a diagnosis and adjusting to the major sudden changes that it bears on their identity as a mother.

Maintaining Normality

Despite the impact of a breast cancer diagnosis, the young women in this study were as one in their desire to maintain normality. This was articulated as being for the sake of their children.

Holly described:

I wanted to keep life very much normal for Jerry [son]. He obviously still had the same needs and would have no understanding of why I might not be there for him. So I think the day-to-day getting on with it, the routine, the structure, and not letting myself feel too sorry for myself and kind of losing it and thinking this is all too hard because it wasn't a pleasant process by any stretch, but it was doable.

Kate also stated:

I think part of it, especially with kids, you just have to get on with it. Part of my thinking as well I think was that, the more normal I can keep things for them, the better it was going to be for all of us, especially for the kids, if I can still keep a routine to a certain extent, it would be better for them and them being able to cope with it as well.

Maintaining normality, however, fulfilled another function. Through the undertaking of familiar routines and maintenance of mothering practices where possible, the young women were able to maintain a link between the present and their lives and identities before diagnosis. Where normality was unattainable because of the disabling effects of treatment, the young women compensated through the development of a range of strategies including, commonly, arranging for another person to fulfill their children's needs:

Even though I couldn't do it, it was getting done. They [children] weren't missing out, they were only missing out from me doing it[horizontal ellipsis] they were still getting their needs met by other people[horizontal ellipsis] I knew they [children] were getting love and attention and new experiences and having experiences, rather than just being stuck at home with me and feeling unwell (Michelle).

Emily described:

I just wanted someone to take them [children] away and have a fun day with them. You know when I couldn't do it and I wanted that, I wanted someone just to make them feel special and fill the role that I couldn't do.

The current research provides further evidence that women prefer to carry on as usual, in an attempt to moderate the impact of breast cancer on their lives as well as the lives of their family members. Recent research has also found that women continue everyday life to help them with struggles experienced due to the debilitating adverse effects of treatment.25 It is also apparent from the current study that despite the seriousness of the mother's illness, maintaining a facade of normality allowed the mothers to maintain a sense of biographical continuity. That is, they were still able to perform their mothering role despite their breast cancer diagnosis, albeit in a limited capacity.

Continuing the Mothering Role

Each young woman constructed and reconstructed her identity as a mother in the context of living with breast cancer. A part of this for all the women in this study was contemplating the future for her children and what would happen to them in her absence should her illness become terminal. This finding is echoed in the literature.23,25 This contemplation included specific or concrete planning and the organizing of roles and responsibilities for the future. As an example, Sheryl spoke about planning for her husband's and her children's future, ensuring their life would be financially secure through her organization of a life insurance policy. She indicated that it was reassuring to her to know that, if she died, her husband would not have the financial burden to work full time and therefore would be more available for their children:

I've got a half a million dollars with a life insurance, if anything happens and that is really, really, really reassuring to me to sort of just know[horizontal ellipsis] At least that side of it, that everyone will be OK. It's not just that they've [children] lost their mother, but at least their dad could be there for them and him not working long hours (Sheryl).

The women incorporated the potential for their mothering to be time limited into their understanding of mothering in the context of living with breast cancer. Biographical reconstruction then for the women was both a process and an outcome.

Social norms and expectations of what it means to be both a mother and a "breast cancer patient" also impacted on the ways in which the women in this study undertook biographical reconstruction "work." The mothers considered that medical practitioners objectified them and that there was no consideration from these professionals of the responsibilities of being a mother and the impact of that on their breast cancer experience. For Jillian, the inflexibility in appointment times and the assumption by medical professionals that the women would attend, irrespective of their other responsibilities, exemplified this:

You didn't get a choice about time [of appointments], it was just, "this is your appointment," and if it had been really awkward, I could have said something, but you didn't get that impression that you could[horizontal ellipsis]. They [medical profession] don't necessarily see you as a mother; it's you're a breast cancer patient, and it's not sort of like "we've got these times, is this suitable?" It's "this is your time."

Jillian was not alone in her belief that it was assumed that the women would prioritize their obligations for breast cancer treatment irrespective of their other responsibilities. Kate stated:

The doctors are all focused on how you're reacting to how you're recovering from surgery, how you're reacting to the chemo drugs, how your skin's reacting to the radiation; that's pretty much all you get asked about.

The young women also found that objectification was not limited to the medical profession. Some sensed they were no longer perceived as a mother, but rather objectified and labeled as a "breast cancer patient" by friends and acquaintances because of their physical appearance including hair loss or a general appearance of poor health. This objectification was associated with isolation and confusion. The young women appeared to consciously or unconsciously isolate themselves from friends, acquaintances, and peers because they received no validation that what they were feeling with regard to their illness was "right" or "normal." In addition, they did not know how to feel. In this respect, the woman's identity was no longer bound up with her mothering role, but rather, being a mother was in a constant dynamic relationship with being a "breast cancer patient." This caused the women confusion about how they were supposed to feel.

Emily explained the alienation and loneliness she felt from other parents at her children's school:

I felt alienated a little bit; I don't think it was an intentional thing but[horizontal ellipsis] you would go to school, and you could see that they [other parents] knew there was something wrong with me, but no one said anything, and I know that they obviously don't want to overstep the mark and how do they go up to someone and say, "Are you OK?" But to me, it made me feel worse; I felt lonely; I thought, "Can you not see I've got children; I've got a little girl here that's in your kid's class".

Communicating with their children about breast cancer became an integral, if unwanted aspect of the young women's changed and changing identity as a mother. Lack of information about what reactions they could expect from their children made the family situation difficult. Despite struggling with the decision, the mothers were the ones who told their children about their illness, treatment, hospital stay, and consequences for the family. These discussions provided an extended role for the young mothers: one that was particular to their reconstructed biographies, while at the same time one that they did not want.

Kate explained that she researched whether to tell her children and ways of going about it because there is very little guidance on the issue:

I actually did a lot of research on the Internet[horizontal ellipsis] about how to tell them, whether to tell them, you know, that sort of stuff[horizontal ellipsis] but there's not a lot out there to tell you how to deal with it, especially younger kids.

According to the National Breast Cancer Centre,4 there has been very little research conducted into the communication of a cancer diagnosis to children. Parents of younger children, particularly, are reluctant to talk to their children about cancer because of perceptions that the child is too young to understand.23,37 When they do discuss the issue with their children, they often use adult language that confuses and creates anxiety for the children.38,39 Furthermore, the emphasis is usually on giving information, which detracts from the necessity to talk with children about their emotions and reactions.40

Experiencing Survivorship

Survivorship, whether it was a few months or a few years after diagnosis, provided a space for the young women in this study to live their lives. Their lives were now built not only around the debilitating effects of diagnosis and treatment, but also around a sense of empowerment, of self-commendation for their coping with, and adjustment to, adversity, enhanced self-esteem, mental strength, and survival. The young women believed that breast cancer was life changing for them and explained that their personal growth was a positive aspect of their breast cancer. In addition, they indicated that, because of acknowledging the possibility of death and feeling like they had a second chance at life, they were able to reevaluate their needs and what was important in their life. They realized that life was too short, and they had a willingness to live for the present. Lorraine described:

There's the whole value of life, knowing that you're not permanent here and that you could be gone, not just from breast cancer, but it's just that knowledge that life is precious and can go, that you're not controlling it.

Materialistic objects, financial rewards, and a successful career were no longer a priority for the young women; rather, they were grateful for the fact that they were still able to be a mother to their children. Holly articulated:

I think in terms of just financial things and I suppose with my approach to work too, I mean I haven't worked since having kids anyway, and I'm kind of thinking, I'm not going to put a lot of stress on my life, I'm going to keep life pretty simple[horizontal ellipsis]. I want to be able to be there for the kids; I want to have a life that's good, and if it means that you're not able to have certain things, then that's OK.

Sheryl also stated:

I feel like I've got to stay close to my kids, and probably because we may not, they may not have me all their lives.

The responses gained from the current study appear to be consistent with the transformation of self, described by Carpenter et al.41 Women in that study reported a new understanding of themselves and made changes in various aspects of their lives such as relationships or work. The women experienced such transformations, triggered by sudden awareness of personal mortality, extremely positively. They reported feeling stronger, more courageous, and more satisfied with their selves and lives as well as high self-esteem and sense of well-being following breast cancer diagnosis.

The women in both the study of Carpenter et al 41 and the current study have-in Bury's terms-reconstructed biographies. Their stories continue, but they are qualitatively different after diagnosis. They now incorporate the impact of changes thrust upon them by virtue of their breast cancer diagnosis and treatment and the changes in priorities and outlook that survivorship has precipitated.

Conclusion

As breast cancer is commonly constructed as a disease of later life, a diagnosis earlier in life disturbs what is seen as a "natural order" and is unexpected or as Bury describes it-a biographical disruption.27,29 A diagnosis for young mothers brings feelings of shock and numbness and necessitates change-one that incorporates a prediagnosis identity as a mother but shaped by the context of living with breast cancer. As a result, the mothering role is modified but is maintained and exists in constant tension with that of "breast cancer patient" and "breast cancer survivor." The impact of breast cancer on their identities as mothers is complex, and understanding this will help healthcare professionals to support them and their families during their illness.

The mothering role and the impact of a cancer diagnosis on this role need to be acknowledged by healthcare professionals. Women feel they are not recognized as mothers, just as patients, and their responsibilities for the well-being of children and the stability of family life are discounted. Nurses are ideally placed to respond to these concerns and to disrupt objectifying discourses emanating from medical professionals because nurses, in both clinical and community settings, support women over an extended period. Addressing issues related to their mothering role should be an integral part of providing psychosocial support. As such, routine nursing practice should include questions to women about whether they have children and about any concerns and issues. Referral pathways for support with any problems should also be established by nurses. The mothers in this study wanted their role to be acknowledged as a first step. Young mothers living with breast cancer should also be offered assistance about what, if, and when to tell children about their cancer and help to incorporate this communication into their role as mothers. Resources need to be readily available to support mothers with this very difficult task, and ongoing professional development could be offered to clinical and community-based nurses working with young women who are likely to have dependent children.