Mothers with breast cancer: A mixed‐method systematic review on the impact on the parent‐child relationship

To systematically review and integrate the findings from quantitative and qualitative studies on parenting and parent‐child relationships in families where mothers had breast cancer (BC).


| INTRODUCTION
Breast cancer (BC) is the most common type of cancer in women worldwide [1][2][3] and the leading cause of death for women in Europe. 3 It is estimated that 255 180 women will be diagnosed with BC in the United States of America, in 2017 4 , and that 12% of women in the United States of America will develop BC at some time during their lives. 1 Also, the rate of women diagnosed with BC before the age of 40 years has increased, corresponding to 6.6% of the total number of cases of BC diagnosis. 5 Still, in Europe and Northern America, the mortality rate has been decreasing since the 1990's.
When a woman is confronted with a BC diagnosis, she often experiences an immediate threat to her survival, 6 along with the emergence of doubts and fears about future implications of the cancer in her daily life and relationships. [7][8][9] A BC diagnosis not only affects the patient but also instigates a crisis in the family system by triggering changes in family dynamics, roles, rules, and routines. [9][10][11] Among diagnosed mothers under the age of 40, one particular challenge is that their children are usually minor and thus more dependent on them. 12,13 Being a mother is a primary role even when women are ill. 12,14 As women facing a BC diagnosis and related treatments must concurrently manage their roles as mothers, these circumstances can adversely affect both their psychological well-being 12,13 and sense of competent mothering. 9 Parenting can be affected by BC in different ways compared to other oncological diseases, since BC may have a big impact on patients' body image. [15][16][17] After breast surgery, some mothers tend to avoid physical contact with their children because they did not want their children to notice their body transformations. 18 Additionally, some mothers made axillary dissection and their physicians advised against physical efforts, such as picking up and holding their children, in order to avoid lymphedema. 18,19 These two situations are specific characteristic of BC and can cause negative feelings (eg, guilt) and thoughts (eg, sometimes they consider themselves bad mothers). 18,[20][21][22] Additionally, the sex of the sick parent affected children's adjustment to the cancer of their parent. 23 So, it is important to understand the specificities of BC in mothers and how these affect parenting and parent-child relationship. However, there are also common points in parenting when one parent has cancer, regardless of the type of cancer. 9,24,25 For example, in some occasions, due to the side effects of treatments, sick parents may have difficulties in responding to children's needs. 9,26 Parents are naturally protective of their children and for this reason try to maintain closeness and daily routines to minimize disruptions in the family system. 9 Whether or not parents should share and talk openly with their children about their illness is commonly a difficult decision faced by families in which a parent has been diagnosed with cancer. While some parents decide to openly discuss the disease with their children 11,27 , others try to avoid this topic. [28][29][30] Although the latter decision is often made to protect children's well-being, some studies have shown that, in general, children do not experience serious psychosocial difficulties after knowing that their mothers have cancer. 31 However, other studies showed different results, demonstrating that the stress and distress levels are higher in children of parents with cancer. 24,32,33 The children's psychosocial functioning has been associated with family functioning variables like cohesion, communication, and affective involvement. [30][31][32][33] For example, Edwards and colleagues 33 found a relationship between little family cohesion and poor family functioning with the emergence of external and emotional problems in adolescents whose mother has BC. The communication between family members and the experience of appropriate affect in the family context are also important to avoid internalizing and externalizing problems in children of mothers with cancer. 33 In the general context of cancer, preliminary evidence seems to suggest that the parent-child relationship is likely to improve. 9 However, this issue has been largely underexplored in the context of BC.
The first studies on women with BC focused essentially on patient's well-being and on how women reacted and coped with this disease. Since 1990, however, attention has been paid to the impact of BC on motherhood and on the mother-child relationship. 9 The present study provides a mixed-method systematic review of the quantitative and qualitative studies regarding the impact of the mother's diagnosis of BC on the parent-child relationship and on parenting. Our intent is to assist researchers in planning future studies by identifying dimensions and processes that deserve more specific scientific attention. It is also hoped that this review will provide valuable information to healthcare professionals and especially to psycho-oncologists, for improving the care and support they offer to women and families facing BC.

| METHOD
This systematic review followed the guidelines of Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). 34  PsycINFO. This search was supplemented by additional hand searching in Google. Search terms used were parenthood* OR mother-child* relationship OR father-child* relationship OR parenting* OR parent-child relationship OR motherhood* AND breast cancer in women. After removing duplicates, titles and abstracts were assessed for eligibility independently by three independent raters. Disagreements between raters were discussed and resolved by consensus.

| Description of studies
A total of 178 articles were identified. After duplicates were removed, 116 studies remained and the abstracts were examined. From these, 92 were excluded for the following reasons: 10 only included healthy participants; 64 did not analyse either the mother-child relationship or parenting; one included other types of cancer or diseases; and 17 were literature reviews or abstracts of conferences or congresses (see Figure 1). A total of 24 studies were retrieved for full-text screening. From these, one was excluded because it incorporated other types of cancers or diseases. 9 Thus, a total of 23 studies exploring the mother-child relationship and parenting in families where mother had BC were retained. A detailed description of the included studies is presented in Table S1.
The average of sample sizes among the qualitative studies was 25, ranging from 6 to 169 participants. Among the quantitative studies (including the one using a mixed-method approach), the average of sample sizes was 189, ranging from 32 to 313 participants. Regarding data analyses, the majority of qualitative studies used content analysis, and most of the quantitative studies used regression analysis. (3) decision-making process about sharing the diagnosis with children; and (3) mother-child relationship and parenting after mother's diagnosis (see Table 1). These three themes were not reported simultaneously in all studies (see Table 2).

| Theme 1: priorities and concerns of patients
After receiving their BC diagnosis, mothers appeared to establish their priorities in terms of social roles. 49 Studies showed that, after their diagnosis, women reaffirmed and intensified their priorities regarding their families and especially to meeting their children's needs. 6,19,43,45,49 Even when these women recognized that they should focus on their treatment-related requirements, they reported difficulties prioritizing their BC treatment over their children's needs. 19 On the contrary, patients tend to prioritize health and well-being over the paid work. 49 Furthermore, when women were required to deal with their cancer-related adjustments (eg, feelings of exhaustion after treatments), they reported diminished parenting efficacy and heightened negative effects and thoughts, such as sadness, guilt, and concerns about being a bad mother. [20][21][22] Their concerns regarding children were seemingly associated with the demands of their maternal role and with social conceptions about parenting that emphasized the greater importance of their children's needs, 19,21,49 regardless of Christmas. 49 Other concerns included how and what to tell to their children about their BC diagnosis 22 ; how their children might react to the possibility of losing their mother 6,12 ; their children's futures 6,12,20,51 ; and how the father will take care of their children if patient dies. 6,12 Regarding how and what to tell to their children about the diagnosis, one of their main concerns was related to the children's possible reactions to the diagnosis and to the prospect of losing their mothers. 20,45 In some cases, these concerns stimulated the mother's development of action plans for ensuring that children would be cared for after her death. 6,20,38 Another common concern was the possibility of having a hereditary cancer that would increase their children's risk of having cancer. 47 These informational and relational uncertainties led some women, especially in the first year after breast surgery, 50 to approach their health professionals for assistance in determining what and how to tell their children about their BC diagnosis, 36,41 how to talk to them about death, 22,37,41 and about the concerns they have. 41,50 Additionally, some mothers requested that psychosocial support services be made available to their children to make the hospital a more familiar setting to them. 36 However, few mothers reported receiving this support, 41,50 and in some cases, despite the support of counsellors, these women remained dissatisfied because they considered that these professionals were unaware of the specific issues faced by women with advanced BC. 41 Moreover, some women reported that their health professionals avoided talking about this topic. 41 Taken together, these women's experiences with health professionals seemed to deepen their feelings of loneliness and anxiety about how to manage their conversations with their children. 41 As a result, they sought advice and support from their children's teachers for how they should act with their children in the future 46 .
3.2.2 | Theme 2: decision-making process about sharing the diagnosis with children The mother's decisions about whether or not to share the diagnosis with her children was apparently influenced by the perceived effects that this disclosure would have on both their children and themselves. 6,35,36,41,42 Both possible decisions have as main goal to protect their children's well-being. 6 Cultural factors also seemed to influence this decisional process. For instance, in Saudi Arabia, where the religion has a fundamental role in people's lives, some mothers explained to their children that BC was a proof of God's love to strengthen their children's religious faith. 35 However, the results from this qualitative study should be interpreted with caution, as its small sample may not have been representative of the larger Arab population.
Overall, the findings suggest that this decision-making process requires considerable time and sustained personal reflection. 42 The reviewed studies identified several reasons and motivations that supported women's decisions to share their diagnosis with their children. These included the belief that their children had the right to know; the mothers' desire to maintain feelings of trust and safety regarding their children 36,39,41,43,46 and to minimize their children's concerns and possible misperceptions about the deterioration of her physical appearance 19,35,36,42 ; and the mothers' intentions to promote effective coping strategies in their children. 35,42 Additionally, some studies showed that mothers who shared their BC diagnosis subsequently experienced less stress, greater relief 42 , and perceived higher levels of social support from their children. 19,42 In comparison, the mothers who chose not to share the BC diagnosis with their children appeared to do so in order to avoid uncomfortable questions, 36,42 an intensification of emotional distress (eg, anxiety symptoms) 35,36,42 and physical discharge in their children 42 and also to preserve special moments in family (eg, vacations). Other mothers based their decision of not to disclose the nature of their illness on the assumption that their children would be unable to understand the BC diagnosis 36 , particularly if they were very young. 19,36,49 Relatedly, when mothers decided to talk about their BC with their children, they used language that was appropriate to the children's age and developmental level 46 , and they provided details that were sensitive to the children's needs. 43 In the latter study, older children (older than 12 years) received more information about the mother's BC than did their younger counterparts. 37 Another study, however, indicated that mother's provision of information was not related to the child's age but rather based on her personal beliefs 39 and influenced by a wide range of factors such as the quality of the mother-child relationship, patterns of family functioning in previous stressful events, and the children's personality 43 and current knowledge regarding BC. 45 Children lacking this knowledge made it difficult for mothers to share information with them in language that was appropriate for their age. 45 In general, mothers only talk with their children when they have a definitive or factual information to share regarding their diagnosis and treatment plans. 37,43 Additionally, patients need to decide what they will tell to their children. 39,42 In some cases, rather than telling to their children that they had cancer, mothers only said that they were ill. 42,43,46 Usually, patients talk with their children about treatments and their related effects (eg, hospitalization, exhaustion/fatigue, and hair loss), because these effects result in clearly observable consequences 42 that will likely require unexpected changes in children's lives for which they must be prepared. 39 Additionally, patients explain to their children the treatment procedures and why they need to make these treatments. 39,41 In some families, these mother-child conversations could be characterized as "unidirectional" in that mothers did not check with their children to ascertain whether or not they understood what was being said. 39  The studies about parenting after mother's diagnosis focus on many dimensions, such as beliefs about parental abilities after BC, division of parental tasks, parenting strategies to protect children, and implications of being a mother in the process of adaptation to the disease.
Providing care to children is the main parental task but that is made specially difficult given the physical and psychological problems related to BC (eg, lymphedema or depression). 19 Mothers with BC often perceive their parenting abilities as diminishing over time, and their sense of failure in meeting their caretaking responsibilities towards their children as increasing. 21,44 Predictably, these trends concurrently augment mothers' feelings of frustration 47 and reduce their satisfaction with their parental role. 44 In these situations, mothers use support from others (eg, family, friends, and social support) to promote a normal family functioning. 20,22 Sometimes, it is the patient's support network that spontaneously tries to decrease the parental concerns and responsibilities of these mothers by assuming some of the parental tasks. 49 In other studies, mothers tended to use a variety of strategies for coping with their BC diagnosis while simultaneously fulfilling their parental responsibilities 6 to minimize any negative impacts of their illness on their children's functioning. 39,43 Findings from these studies can be organized into eight types of strategies: (1) using physical and emotional support available to save energy and strength to cope with and playing a more active role in their education. 39 As previously mentioned, 10 of the 23 articles presented in this systematic review found that mothers try to maintain their children's routines to protect them. 6,[20][21][22]39,41,43,45,46,49 This strategy has the benefits of minimizing disruptions in their children's lives 6,21 while promoting their feelings of security, protection, and comfort. 21,41 At the same time, this strategy can reduce the mother's concerns regarding the impact of her BC on her children 6 and promote sense of normality within the family. 20,21 Mothers try to show their children that they are living a normative life event. 21 However, they can have some difficulties in dealing with family responsibilities while facing BC. 21 Thus, when they are less available to their children because of treatments and side effects, some mothers experience feelings of loss, pain, 47 sadness and guilt, and sometimes they consider themselves bad mothers. [20][21][22] While some studies showed that mothers talk openly about BC, 39,41,43 others showed that sometimes mothers tend to suppress their emotions 6,38,43,45 in order not to expose their children to some side effects of the treatments (eg, hair loss). 43 Occasionally, this happens because they are trying to maintain normality or because children do not want to know or see these side effects. 43 However, because this strategy may require that mothers use emotional suppression to decrease the impact of BC in their children, it may also have negative consequences for their emotional well-being. 37,38 The use of emotional suppression usually increases anxiety levels and depressive symptoms, since mothers need to make more deliberate efforts to avoid talking about their cancer and related issues in the presence of their childen. 37,38 Regarding parental rules, only one study 40 demonstrated that these rules changed when the mother had BC, with some mothers acknowledging that they became more tolerant of their children's behaviors. 40 In addition to these changes in parental rules, mothers' goals for their children also appeared to change. For example, mothers reported that they no longer focused exclusively on providing the best education and opportunities for their children, but instead focused on providing autonomy, 19 security, and protection. 45 Regarding the mother's availability to her children, results are not consistent. While some studies showed that mothers felt their availability for their children decreased during active periods of BC treatments, 20,21 other studies showed that, after BC diagnosis, mothers spent more time with their children and played a more active role in their development, at least temporarily. 39 When women received a BC diagnosis, some concerns emerged regarding parental abilities of the husband to educate their children alone. 6,12 Despite these concerns, in some cases, the father became more active and involved in children's education during BC treatments. 47 This change triggers an improvement in the father-child relationship, and some mothers become satisfied with this division of parental responsibilities. 47 Additionally, in some families, the children's role within the family also changed, as children tend to take care of their mothers after BC diagnosis. 47 When children know that their mother is ill, they start to provide more emotional and instrumental support and, consequently, the mother-child relationship tends to improve. 19,42 Also, sometimes children tend to use the support from other significant figures when they have some problem. 49 This way they try not to disturb their mother. 49 Mothers acknowledged that this shift in the child's seeking attitudes helped them during this period. 49 Finally, studies showed that being a mother seems to function as a protective factor for women with BC, as their children's needs for care provide them with an important motivation for coping adaptively with their life circumstances. 6,45,48 This happens because mothers feel that children need their care. In particular, these mothers avoided indulging in negative thoughts of giving up, thereby sustaining their positive motivation to cope with the disease. 6 on explanations given to children. 6,35,37,39,[41][42][43]46 It is clear that the decision about if, when, and how to tell to their children about BC diagnosis is a difficult task that can amplify the distress that accompanies BC diagnosis and treatment.
Studies on mother-child interaction in these affected families focused attention on the behaviours adopted by parents to prevent disruptions in their children's lives. 6,[20][21][22][37][38][39]41,43,45,46,49  being (and especially that of adolescents) was likely to be adversely affected. [28][29][30] The importance of open communication was also present when women expressed their needs for professional guidance in talking about their concerns with their children. 22,36,37,41,50 However, women also reported that most health professionals did not attend to this need. 41 This systematic review also identified some noteworthy gaps in this general line of inquiry. For example, all studies have explored parenting issues and the mother-child relationship during the diagnostic or treatments phases of BC. Accordingly, the process of adaptation in the mother-child relationship and those involving changes in parenting and parental roles during survivorship remains unknown. During survivorship, women continue to experience some psychosocial difficulties but, at the same time, the family system has decentred from the initial shock of the diagnosis and may be able to better cope with the stress of the continuing illness. 53 Presently, there is insufficient evidence regarding long-term changes in family dynamics, especially those in the mother-child relationship. These long-term effects may depend on many factors such as the developmental stage of the children or the family's prediagnosis functioning. Further studies are needed to explore how particular changes in mother-child interaction following BC and how BC diagnosis either facilitate or hinder family adjustment. To date, only 2 studies focused on this issue, 19,42 with both finding that the mother-child relationship tended to improve. 19,42 This pattern has similarly been observed in the context of other types of cancer. 9 However, additional studies are necessary to illuminate the factors that contribute to this improvement.
It is also noteworthy that, with one exception, 47 none of the reviewed studies specifically explored the father's relationship with the children. Future studies of the impacts of this relationship on the mother-child relationship are also needed, as there is indirect evidence that when the father assumes more active role in parenting, the mother's adaptation to her disease is facilitated. 18 Only one study 40 analysed changes of parental rules, but this dimension emerged spontaneously in the course of participants' interviews and was not specifically probed by the interviewer. 40 Therefore, future studies should additionally explore variability and changes in parental rules when the mother has BC. The inconsistent findings regarding mother's availability 20,21,39 may be explained by mother's perceptions about what availability means. Spending more time with children does not necessarily mean that the mother is more sensitive to children's needs.
The majority of reviewed studies (91%) focused on the mother's perspectives about how BC was lived in their parenting and motherchild relationships, 6,12,19,20,22,[36][37][38][39][41][42][43]45,46,[48][49][50][51] and only two studies assessed the perceptions and experiences of children. 40 Indeed, many other potentially important impacts of a mother's BC on parenting and mother-child relationship remain unexplored. For instance, we did not find any comparative studies exploring the parenting behaviours adopted by mothers who shared vs withheld disclosure of their diagnosis from their children. Also, none of the reviewed studies explored changes in parental rules and in mother-child relationships from BC diagnosis into survivorship. Therefore, to better explicate the complex process of adaptation to BC for both women and their children, studies are needed that use sophisticated data analytic procedures for assessing the intrapersonal and interpersonal effects of mother-child emotion regulation dynamics on these participants' psychological functioning.

| Implications for practice
The findings of this systematic review contribute to a better understanding of parenting and mother-child relationship in families where the mother has BC. This enables psychologists to provide more sensitive support to BC patients, as these mothers clearly indicated a desire to talk with health professionals about their concerns regarding sharing their diagnosis with children. 22

| Limitations
The included studies have several limitations. For the most part, the three main themes found in this systematic review emerged essentially from interviews with women with BC that had children, and most stud- Some inconsistencies in findings can emerge because of the lack of defining some terms, like availability. This can cause bias in interpretation of data. It is important to be aware of these limitations when interpreting these results.
Finally, while we followed PRISMA guidelines to identify eligible studies, it is possible that studies relevant to this systematic review were unintentionally excluded. For instance, some studies exploring parenting and mother-child relationship in the context of BC may not be included because of language constraints or because they were published in nonidentifiable resources.

| CONCLUSIONS
With this systematic review, we found that empirical research about parenting and parent-child relationship in families with mothers having BC focused essentially on three main themes. Being a mother with BC makes parenting a more complex experience and because of that, these mothers need a greater informal and formal support, especially from health professionals. Although the studies about parenting and relationship between sick mothers and their children are increasing, there are still dimensions and processes that need to be further explored to improve the care provided to women with BC and their families.