Parents' Experience of Cancer Who Have Young Children

A Literature Review

Abstract

Background: 

The National Cancer Institute estimates that 24% of adults with cancer are parenting children younger than 18 years. When a parent is diagnosed with cancer, this is a major stressor and often creates multiple problems for families.

Objective: 

The aim of this article was to conduct a comprehensive review of the literature on the experience of parents with cancer who are caring for young children.

Methods: 

A comprehensive review of the literature was undertaken using systematic review principles. The search strategy included five electronic bibliographic databases, using the search terms: parent, cancer, parents and cancer and communication.

Results: 

Thirteen studies were found that focused on parents' experience of cancer. Eleven of the 13 studies used solely qualitative methodology, and 2 studies used mixed methods. Of the studies identified, the majority focused on the experience of mothers, and mainly those with a diagnosis of breast cancer. Analysis of the 13 studies on parents' experience following a diagnosis of cancer revealed 3 predominant themes: (a) being a good parent, (b) telling the children, and (c) maintaining routine at home.

Conclusion: 

The 3 themes highlight how parents with cancer struggle to know how best to talk to their children about cancer and the perceived lack of guidance and support from professionals, the feelings of guilt about not being "a good parent," and the effort required to maintain routine at home as a way of protecting their children.

Implications for Practice: 

Support for parents with cancer on relevant parenting issues should be acknowledged as an important facet of care for oncology nurses, as a mechanism of reducing parental stress and psychological distress for the whole family.

The National Cancer Institute estimates that 24% of adults with cancer are parenting children younger than 18 years.¹ In the United Kingdom, 1 in 10 cancer patients are aged 25 to 50 years.² The incidence rate of cancer for the younger patient group (aged 20-44 years) has steadily increased over the past 3 decades, because of a change in the epidemiology of some tumor groups, such as skin cancer, head and neck cancer, and lymphoma.² Up to a third of breast cancer patients are estimated to be parents with young children.

When a parent is diagnosed with cancer, this creates multiple problems for families, which add to normal challenges of family life.³ This is a very difficult time for parents as they face coping with a diagnosis of cancer and subsequent treatment, while also continuing to meet the needs of their children. Cancer is a new experience for parents, and in most cases, families do not have the necessary knowledge on how to best respond to the needs of their children during this time. Parents have clearly articulated their need for additional professional support, especially as they consider talking to their children about the illness.^4-6

In the past decade, there has been a growth in the number of studies addressing the impact of cancer for parents with young children. Synthesizing this knowledge into a more systematic and organized fashion could advance the understanding of parents' experience of cancer while caring for young children and better inform the organization and delivery of care to this patient group. It could also identify knowledge gaps in relation to the topic and areas for further research.

This article reports the results of a comprehensive review of the literature on the experience of parents with cancer who are caring for young children. For the purpose of this review, young children included 3 stages of cognitive development: early childhood (3-7 years) (but not infancy), school-aged child (8-11 years), and adolescents (12-15 years).⁷

The Review

A comprehensive review of the literature was undertaken using systematic review principles. The search strategy included a range of electronic bibliographic databases, which included British Nursing Index, CINAHL, EBSCO Nursing & Allied Health, EBSCO Psychology & Behavior Science, EBSCO SocINDEX, and MEDLINE (1996 to present). The search terms used were parent, cancer, parenting, and cancer and communication. The search was limited to publications written in English that were published between 1990 and 2008, which totaled 156. The first author (C.J.S.) reviewed the abstracts to identify studies that demonstrated evidence of a logical planned format, thus classified as research.⁸ Full articles of the research studies were obtained. This search was supplemented with manual searches using references lists of extracted articles and resulted in a total of 62 references. Against this, the following exclusions were applied to keep the focus of the literature review specific to the experience of a parent diagnosed with cancer who have young children:

• studies that focused exclusively on parents with adult children (≥21 years old)
• studies that addressed the spouse's/children's perspective
• studies that focused on end-of-life issues

Dissertation abstracts were also excluded, as limited information was available to assess the strength of the research methodology. As the focus of the review was on parents' experience of cancer who have young children, all of the papers had a qualitative component; however, research studies that used a variety of methods (qualitative and quantitative) were also included provided they had the appropriate focus and a clearly identified research method.

Preliminary reading by the first author gave early indication of the strength of the studies, and prior to inclusion in this literature review, consideration was given to their methodological quality using procedures described by Lincoln and Guba.⁸ Hence, the trustworthiness of each qualitative study was based on the 4 constructs outlined by Lincoln and Guba⁸: credibility, transferability, dependability, and confirmability. For studies to be viewed as credible, participants had to be accurately identified and described. Transferability is noted to be impossible from the stance of external validity, but assessment was made and judgment was based on the range of information available and on the thickness of the descriptive data. The confirmability was evaluated against the audit trail provided to determine if the conclusions, interpretations, and recommendations could be traced to their source and not biases of the researcher. Aspects of the audit trail were also assessed to establish dependability of the qualitative studies, such as the information provided on the raw data (topic guide), data reduction and analysis, data reconstruction and synthesis (themes), and process notes. The search strategy resulted in the selection of 13 studies that focused on parents' experience of cancer when caring for young children, which are presented in Table 1.

Table 1: Summary of Studies

Table 1

Table 1: continued

Search Results

The 13 studies that met the inclusion and exclusion criteria are summarized in Table 1. Each article was read to identify the setting, research participants, and findings, and then the articles were compared for common and recurring themes to establish where similarities and differences occurred. It is notable that most studies (12 of 13) were conducted in North America (n = 6) and Scandinavian countries (n = 6), with only one reported study originating in the United Kingdom. Eleven of the 13 studies in this analysis used solely qualitative methodology, and 2 studies used mixed methods. One of the mixed methods studies was longitudinal in nature, following a cohort of cancer patients on 5 occasions at 4-month intervals.¹⁶

The number of participants recruited for the studies with a solely qualitative approach ranged from 8 to 47. All of these qualitative studies were cross-sectional in nature, with researchers exploring patients' experience of cancer over a broad time frame, ranging from 3 months to 12 years from diagnosis. These studies predominantly used a descriptive qualitative approach, with the aid of a topic guide to help frame the unstructured interviews. Barnes et al,⁹ Helseth and Ulfsaet,⁵ and Shands et al⁶ all provide comprehensive outlines of the topic guide used in their studies.

All of the studies outlined in Table 1, with the exception of two (Stiffler et al⁴ and Shands et al⁶), combined the age range of the dependent children (ranging from 0 to 23 years old); therefore, no convincing conclusions can be drawn about the parenting experience as related to the age of the children, that is, early childhood, school-aged or adolescent children. Moreover, of the studies identified, 10 focused exclusively on the experience of mothers,^{4,6,9-11,13,14,16-18} and mainly those with a diagnosis of breast cancer.^{4,6,9-11,13,17,18} One study recruited both mothers and fathers with heterogeneous cancer diagnoses; however, there was still a much higher prevalence of mothers in this study, with 7 of 9 participants being female.⁵ One study was identified that focused exclusively on the experience of men as parents who had been diagnosed with various hematologic cancers.¹²

Findings

Analysis of the 13 studies on parents' experience following a diagnosis of cancer revealed 3 predominant themes: (a) being a good parent, (b) telling the children, and (c) maintaining routine at home. It is important to note that these 3 themes were not consistently reported across all studies. A critical analysis of the literature using these 3 themes is presented in the following section.

BEING A GOOD PARENT

When a parent receives a diagnosis of cancer, it is acknowledged in the literature that the demands of this illness add to the normal challenges of parenting.^10,19 A study in Norway by Helseth and Ulfsaet⁵ recruited 18 parents of 23 children (0-18 years old) to assess the main challenges in parenting of young children when a parent has cancer. They concluded that mothers and fathers faced this challenge by trying to make the best of the situation. Parents were very aware that a cancer diagnosis could bring insecurity and worries into their children's lives and focused their energy into the well-being of their children. Helseth and Ulfsaet⁵ highlighted that parents with cancer can struggle in this endeavor of being a good parent, feeling torn between their own need for care and that of their children. This study focused collectively on both mothers' and fathers' experience, with no conclusions drawn on the differences or similarities experienced by either group.

A number of the other qualitative studies also demonstrated that parenting is often perceived as a struggle, especially during the treatment phase of the illness. Ohlen and Holm¹⁷ conducted interviews with 9 middle-class Swedish mothers with breast cancer who were attending a support group. In addition to an individualized narrative interview, 7 group interviews were conducted over a period of 6 months at the weekly support group meeting. In this study, mothers who lacked the ability and strength to maintain parental roles often felt guilty. They felt there were societal demands on them as a woman to continue taking responsibility for child care and housekeeping during sick leave, despite the impact of their illness. The experience of a life-threatening illness meant mothers were often confronted with irresolvable dilemmas causing them suffering, such as not managing to support the children and concerns around not being available throughout all of their children's childhood if the disease leads to an untimely death. Elmberger et al¹¹ reported similar findings, from a study population akin to the previous study, namely, 9 Swedish mothers with breast cancer who were also attending a support group. During treatment for breast cancer, mothers felt exhausted and often put the needs of their children in front of their needs as a patient, in fear of not being "a good parent." Women felt that their partners could not give the "extra" emotional support to them or their children. Participants from both these studies^11,17 were attending a breast cancer support group, which one might expect to act as a catalyst in dealing with the demanding situation of parenting with cancer. Despite this, mothers continued to report many challenges of being a good parent. Elmberger et al¹¹ recruited 6 single or separated mothers (total sample size = 9), but the situation of parenting as a single mother has not been extensively researched.

Following a cancer diagnosis, the main aim of parenting was to protect the children and make them feel as secure as possible. This has been expressed in various ways in the studies reviewed. For example, spending more time with their children,¹⁸ minimizing disruption to family life as a mechanism to help their children cope during this period of transition,⁶ and a will to be strong for their children.¹⁰ Furthermore, Barnes et al⁹ concluded that the main driver for each parent's decision for disclosure or nondisclosure of their cancer diagnosis was the desire to be a good parent.

Not all studies viewed the changes in parenting following a diagnosis of cancer negatively. In light of the demanding situation and in pursuit of being a good parent, Shands et al⁶ found that mothers with breast cancer spent more time with their school-aged children. Thus, engaging in different activities is part of helping their children cope with this unique situation. Participants in this study were limited to the highly educated mother with breast cancer and predominantly a white study sample, which is similar to other studies in this review.^11,17 Further research needs to involve both mothers and fathers from other tumor groups and participants with more diverse educational and ethnic characteristics.

In a further study, Elmberger et al¹³ explored how 10 mothers who had lymphoma dealt with being a parent. Despite the struggle to master the situation, one of the positive reflections reported was how longer-term closer bonds were formed with their children. This was often a result of redefining mothering, by encouraging their children to become more involved in household tasks such as cleaning the house and cooking. Furthermore, Walsh et al¹⁸ expressed how mothers, through their experience of cancer, were more tolerant of their children's behavior and had a greater appreciation of the time spent together as a family.

MAINTAINING ROUTINE AT HOME

Following a diagnosis of cancer, parents often tried to maintain routine at home, which in turn demanded a lot of effort.^11,14 A Swedish study by Billhult and Segesten¹⁰ explored how 10 mothers with nonrecurrent breast cancer perceived their parenting experience. Mothers had a will to be the one who continued to be always there, which meant placing high demands on them. They considered that continuing everyday life meant that children could go to their activities, such as school and sports, and in doing so, their children would not notice their illness in the same way. This not only minimized disruption at home but also provided them, as a mother, with relief. This finding, that maintaining routine at home is a helpful coping strategy, has been echoed in other studies.^5,10 This sometimes kept mothers out of bed despite the arduous adverse effects of treatment, therefore demonstrating remarkable strength and determination.

Similarly, Ohlen and Holm¹⁷ reiterated this finding, highlighting how mothers with breast cancer tried to "be ordinary" and give the appearance of normality. Participants felt that everyday routines reduced change and instability in the lives of their children, thus providing them with protection and comfort. Maintaining routine in everyday life spanned many roles, for example, their roles as a mother, spouse or partner, employee, and activities in society and the community. Nevertheless, the narratives in this study¹⁷ clearly depicted that mothers encountered an "out-of-the-ordinary" experience and soon began to struggle with being "in between 2 worlds"-one was maintaining what used to be ordinary before the onset of the illness, and the other was facing the illness, which meant inevitable changes.

As the adverse effects of treatment became more apparent, combining family life and the demands of the illness clearly caused parents to struggle.^4,11,17 The descriptive qualitative study of Stiffler et al⁴ of 8 mothers with breast cancer who had adolescent daughters recruited from 2 states in the United States articulates this as a "battle fought on many fronts." Mothers have the desire to be present and normalize their daughters' experiences throughout their important adolescent years. Akin to the findings from Billhult and Segesten,¹⁰ mothers were determined to protect the rhythms of their family routines by sometimes ignoring or diminishing their own health needs. However, when mothers experienced intense adverse effects of treatment, which were impossible to ignore (especially the fatigue), they eventually realized that they simply could not maintain normal routine at home. At this stage in their cancer trajectory, parents experienced sadness and guilt as they realized the treatment and adverse effects prevented them from being fully and consistently available for their children. This was an emotional struggle and was seen by parents as a loss of control. Undoubtedly, this can present the parent with a challenge, which has also been acknowledged by Fitch et al.¹⁴ Mothers know that their children need to be cared for, yet they as a parent need care for themselves. At this stage of their illness, cancer intruded on their family life and interrupted the continuity of care they could give their children. At this time, parents often had to mobilize their family, friends, and social networks to keep the home functioning and purposefully not placing too many expectations on their daughters.⁴

The mothers with cancer from various sites in the qualitative study of Finch et al¹⁴ talked about the tensions involved when they asked their daughters to undertake more responsibility with home management. Interestingly, Finch et al¹⁴ found a consistent theme in their data: the relationship between daughters and mothers became more distant, whereas the relationship with sons became closer. None of the other studies in this review explored this concept, but credence should be given to the study findings of Fitch et al¹⁴ as they have a much larger sample size than the other qualitative studies in this review.

TELLING THE CHILDREN

Communication is one of the key factors to help children adapt to their parent's cancer.¹⁵ Parents with cancer, however, struggled with having to tell their children about the cancer.^5,9 A number of the qualitative studies^4,5,9,20 acknowledged that communicating with children about a mother's or father's cancer required a lot of decision making, mainly around the timing, wording, and amount of information.

Barnes et al⁹ focused on communication between 32 mothers with breast cancer in the United Kingdom and their school-aged children and explored through qualitative interviews why some parents decided to talk to their children about their cancer, whereas others did not. This robust study, with its clear audit trail, reports the reasons parents gave for withholding information from their children. These were to avoid questions about cancer and death, to prevent distress for the child, to preserve family times, and their expectation that their child would not understand the illness. On the other hand, some parents wanted their children to have information, and the reasons were their belief in communication and the importance of talking, desire to keep their children's trust, and communication as a way of alleviating children's distress. In contrast, Helseth and Ulfsaet⁵ and Billhult and Segesten¹⁰ demonstrated that it was not a simple either-or situation, but was in fact about trying to strike the balance between telling the truth and protecting the child. Moreover, in both studies, this was perceived as a challenge, but was an important strategy in helping the children cope with the parent's illness.

Stiffler et al⁴ highlighted that communicating with children was one of the main concerns for mothers when they were diagnosed with breast cancer. Similar to the finding of Barnes et al,⁹ this more recent study also concluded that mothers offered various explanations for the different level of disclosure about their illness, for example, protect their adolescent daughters from distress, keep adolescent life as normal as possible, and gain some level of understanding appropriate for their age. Irrespective of the level of open or limited communication decided upon, mothers second-guessed their communication decision. Hence, it would appear that parents often lack confidence with this important component of parenting. Parents' lack of confidence in their skills to deal with this new situation, in addition to the distress associated with a cancer diagnosis, may, in part, explain why parents find communicating with their children so onerous.

Stiffler et al⁴ outlined that another important factor to be considered when talking to children about their parent's cancer is the age of the child. The need to tailor information to the developmental age of the child has been highlighted by a number of other qualitative studies.^6,10,14 In the study of Barnes et al,⁹ they acknowledged that each child experienced different needs that had to be met individually. This often meant parents spent time with each child to elicit his/her individual information and support needs. Nevertheless, parents have difficultly in finding a balance between what children need to know to reduce isolation, while at the same time not wanting to give them additional worry or cause distress.¹⁴ Finally, Stiffler et al⁴ outlined the need for parents to communicate information to their children with a hopeful perspective.

There was an overwhelming consensus from the available literature that parents felt unsupported by professionals and were not always given advice on how to talk to their children.^5,11 Cancer was a new experience for parents, and in most studies, they felt they had inadequate knowledge on when to tell their children, how much information to give them, and how to respond to their children's reactions.^4-6 Shands et al⁶ highlighted that despite mothers with breast cancer trying to do their best, they often assumed the role of a teacher when they shared their diagnosis with the children. This study emphasized that mothers used technical language when "talking to the children" and they did not check out if the children understood the information or explored their thoughts, feelings, or fears. Shands et al⁶ concluded that telling is not explaining: talking to children is not the same as talking with the children about cancer. Given the difficulties expressed, it would appear that parents need help in developing strategies to enable open communication with their children regarding their cancer, to reduce isolation and maintain trust.

Discussion

The predominance of qualitative studies found in this review is highly suitable, given the topic being examined. The inductive and interactive nature of qualitative approaches allows researchers to gain a better understanding of people's perceived experience, intentions, and motivations by means of exploration.²¹ In such designs, data are often collected in their natural environment, such as participants' homes. This is highly pertinent for the phenomenon being studied, therefore taking important contextual factors into account.

The significant finding from this review was the emergence of 3 continually recurring themes that provide a powerful message for those caring for patients with cancer who have young children. The 3 most important issues from this study were (a) the overwhelming feelings of guilt about not being a good parent, (b) how parents channeled their energy but often struggled to maintain routine at home as a way of protecting their children, and (c) how parents with cancer struggle to know how best to talk to their children about cancer, with 4 studies highlighting the perceived lack of guidance and support from professionals. Parents have high ambitions and expectations of themselves despite their illness.

Synthesizing the information from the previous studies has identified an area where patients are continuing to report the need for additional support. The impact of this perceived lack of support from professionals cannot be underestimated, as parents with cancer can experience significant parental stress, which can lead to depression.²⁰ Decreased psychological availability and less consistency with discipline are characteristics associated with parents who are depressed. It is therefore not surprising that parents with cancer are at a higher risk of familial dysfunction.^22,23 Furthermore, young children who have a parent with cancer can also experience distress, which can lead to behavioral and emotional problems.²⁴ This lack of support and information reported by parents are of concern, given the compelling evidence that this leads to poorer adjustment for all the family.

Hospital specialists and oncology nurses can enhance the care of parents diagnosed with cancer by helping them to think about and develop strategies for talking to their children. Parents with cancer also need support and guidance about how best to manage family life during treatment and address issues and challenges as a parent surviving cancer. In routine clinical practice, patients who have young children should be offered support on parenting issues throughout their cancer trajectory. This is of paramount importance, as open communication between family members not only can lead to greater martial satisfaction but also can have a positive effect on the child's functioning.²⁴

Most studies focused specifically on the experience of a mother with cancer, with minimal attention given to fathers with a similar diagnosis. Furthermore, the literature on mothers predominantly recruited those with a diagnosis of breast cancer. It cannot be assumed that the experience of parenting following a diagnosis of breast cancer is similar to, for example, a father with head and neck cancer. There are well recognized differences in the sociodemographic characteristics between these 2 patient groups, with a preponderance of men from lower social class backgrounds being diagnosed with head and neck cancer. Although breast cancer is probably the most common disease in parents with cancer, more studies are required to gain insights into the functioning of parents from other tumor groups, especially those that have higher incidences in men. In addition, knowledge gaps still exist on how parents with young children manage their parenting responsibilities from ethic minorities and those who are single parents.

Furthermore, only 2 studies recruited parents who had children at specific developmental stages (school aged [6], adolescent [4]), whereas the other studies reported on parents with children of considerably different ages (ranging from 0 to 21 years); thus, drawing conclusions on how the age of children impacts on a parent's experience of cancer is limited.

Conclusion

This review gives a fuller picture of how a diagnosis of cancer impacts an individual, who is a parent caring for young children. The predominant issues are the desire to be a good parent despite their challenging situation; the difficulties of telling the children, which is exacerbated by the lack of professional support; and the effort exerted in maintaining routine at home as a mechanism to protect their children.

Although the available literature provides a useful insight into the experience of parents with cancer who are caring for young children, there are still notable gaps in the evidence base. Future studies are required with men to elicit the experience of fathers with cancer. Given that most studies recruited solely mothers with breast cancer, there is a need to explore parents' experience with other types of cancer. In routine clinical practice, there is also a need for parents who have young children to be offered support on parenting issues throughout their cancer trajectory.²⁵