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The impact of a breast cancer diagnosis in young women on their relationship with their mothers
The Breast 23 (2014) 50e55
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The Breast journal homepage: www.elsevier.com/brst
Original article
The impact of a breast cancer diagnosis in young women on their relationship with their mothers Asma Ali a, *, Karen Fergus b, Frances C. Wright c, Kathleen I. Pritchard a, Alex Kiss d, Ellen Warner a a
Department of Medicine, Division of Medical Oncology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, University of Toronto, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada York University, Department of Psychology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Patient and Family Support, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada c Department of Surgery, Division of General Surgery, Sunnybrook Health Sciences Centre, Odette Cancer Centre, University of Toronto, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada d Department of Research Design and Biostatistics, Sunnybrook Health Sciences Centre, Odette Cancer Centre, University of Toronto, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 28 April 2013 Received in revised form 1 September 2013 Accepted 14 October 2013
Background: For young women with breast cancer mothers might either be a source of support or of increased stress, depending on the premorbid relationship and on the psychological effect of the daughter’s diagnosis on her mother. Objectives: To examine the effects of a breast cancer diagnosis on young women’s relationships with their mothers and the possible support needs of these mothers from the daughters’ perspective. Patients and methods: We developed and pre-tested a self-administered questionnaire on 10 survivors of breast cancer diagnosed age 40. Then, consecutive recurrence-free young women diagnosed with breast cancer were asked to complete the modified questionnaire. Results: Of 110 daughters approached from July/11 to May/12, 90 (82%) participated. In 11 cases (13%), the daughters had turned to their mothers before approaching anyone else. Of the 83 daughters who disclosed their diagnosis to their mothers, 76 (92%) stated their mothers had been emotionally and/or practically supportive, and 43 (54%) reported that the breast cancer diagnosis had a favorable impact on their relationship with their mothers. Of the 35 employed mothers, 26 had taken time off from work to support their daughters. Nineteen mothers, eight of whom had been living in a different country, had slept over or moved in with daughters during their treatment. Twenty-two daughters believed their mothers felt responsible to some extent for their developing breast cancer. Fifty-nine daughters indicated that health care professionals could help mothers by providing information pamphlets, education sessions, and linking to support groups. Conclusion: Mothers are an important source of support for young daughters with breast cancer, with the motheredaughter relationship frequently becoming closer after the diagnosis. However, the practical and emotional burden on mothers appears to be high. Future studies should address the effects of a breast cancer diagnosis in young daughters from the mothers’ perspective, and the benefit of formal supports for these mothers. Ó 2013 Elsevier Ltd. All rights reserved.
Keywords: Breast cancer Young women Motheredaughter Relationship Psychosocial Supports
Background Although in developed countries fewer than 10% of women are diagnosed with breast cancer at age 40 or younger [1] they have a * Corresponding author. Present address: Division of Medical Oncology, Comprehensive Cancer Centre, King Fahad Medical City, P.O. Box 59046, Riyadh 11525, Saudi Arabia. Tel.: þ966 288 9999x16825. E-mail address: [email protected] (A. Ali). 0960-9776/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.breast.2013.10.004
poorer prognosis than their older counterparts and bear a disproportionate degree of physical and psychological morbidity [1,2]. Psychological challenges to young breast cancer patients include greater likelihood of mastectomy, loss of fertility, premature menopause, disruption of studies or new careers, strain on relationships with partners, childcare issues, financial pressures, and greater likelihood of a BRCA mutation [3e6]. Although psychosocial research directed to women in this age group is receiving more attention, the majority of studies have focused on the ‘couple’
A. Ali et al. / The Breast 23 (2014) 50e55
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Research study
relationship, and effects of the diagnosis on young children and adolescent offspring [7e13]. For women in their 20s and 30s we would expect the mother daughter relationship to be uniquely affected by breast cancer, both because of the dependence many young women still have on their mothers, as well as the devastating impact on the mothers of this diagnosis in their daughters. To the best of our knowledge, no study has been published to date looking at the effects of a breast cancer diagnosis on the motheredaughter relationship, nor on the possible support needs of these mothers. Understanding this could help health care professionals develop interventions to improve this relationship and ultimately lower psychosocial morbidity in the daughters and mothers. We initiated a study to better comprehend the general impact of breast cancer in a young woman on her relationship with her mother from the daughter’s perspective, and the possible support needs of the mother, and to determine what pre-diagnosis, patient, tumor and treatment factors might predict how breast cancer will affect the relationship and/or affect supports provided by mothers.
In February 2008 our center launched a clinical and research program (PYNK: Breast Cancer Program for Young Women) for women aged 40 and younger newly diagnosed with breast cancer [14]. Consenting women have their clinical, epidemiological and family history data entered in a prospective database. For this study, consecutive recurrence-free women, aged 40 or younger at diagnosis and within four years of diagnosis, who had previously consented to be part of the PYNK program, were identified and approached at their regular oncology follow-up visit. If it was determined that their mothers were alive at the time of their breast cancer diagnosis, they were invited to participate in the study. Women scheduled to see their oncologist more than six months from the date the study had opened were mailed a prepaid envelope with a copy of the questionnaire, the consent form, and an introductory letter. A follow up reminder phone call was made to non-responders, and a second mailing was sent out to those who so requested.
Patients and methods
Linkage to PYNK database
The pilot and the current research studies were reviewed and approved by our Institutional Research Ethics Board. Through a) a literature review, b) regular meetings of an interdisciplinary panel of experts in psychology, research methodology, and breast oncology (AA, KF, FW, KP, EW), and c) informal interviews with three young breast cancer survivors, key questions were identified relating to the effect of a breast cancer diagnosis in young women on their relationship with their mothers, and the possible support needs of these mothers. Corresponding questionnaire items were then drafted.
Each questionnaire had a study number to allow abstraction of relevant data from the PYNK database. This data included demographics not captured in the questionnaire, family history of cancer, genetic counseling and testing results, breast cancer stage, and treatments received.
Pilot study From January 2011 to March 2011, 10 breast cancer survivors aged 40 or younger at diagnosis, whose mothers were still alive at the time of the study, were identified through a search of the medical oncology follow up clinic list at Sunnybrook Odette Cancer Centre, and were asked to complete the 52 item draft questionnaire, assessing it for clarity, content and sensitivity. The questionnaire was a mix of closed ended items on a 5 point Likert scale, and open ended questions with room to elaborate. Participants were encouraged to suggest alteration, deletion or addition of items to improve the questionnaire. The draft questionnaire was modified based on participants’ feedback. Some items were changed from the open ended format to relevant tick box options after noting a limited range of responses. One item was reported as unclear and was reworded. Some items were added at the suggestion of the study subjects, and others including the motheredaughter relationship during childhood or teenage years, and the mother’s role in her daughter’s treatment decision making were deemed to be less relevant and removed. Item retention was guided by the desire to maintain relevance and cover the breadth of an unexplored subject, tempered by awareness of the sensitivity of the topic and the limited time of the potential participants. Thirty-eight items were retained after review by the interdisciplinary panel, and the modified 38- item questionnaire was used in the subsequent research study. The questionnaire included the following: demographics of mother and daughter, any history of breast cancer in the mother, illness attributions, nature of the participant’s relationship with her mother pre and post diagnosis, sources of support to participant, type and value of supports provided by mother, perceived support needs of mother, and participant’s advice to other young women newly diagnosed with breast cancer vis-a-vis their relationship with their mothers.
Data analysis Content analysis was performed with the focus of the results being on the frequency with which certain responses were offered [15]. The following procedure was used to derive the categorization scheme upon which the content analysis for this study was based: textual analysis was carried out using N-Vivo 9 software. Responses to each question were carefully reviewed in order to discern the key message or messages within the response. These units of meaning were then labeled and these labels, in turn, formed the basis for the coding frame for that particular item/question. The number of codes or categories within each frame ranged from 3 to 12 depending on the nature of the question. Once finalized, the coding frame was systematically applied to all responses for a given question, and each code was counted for the number of times it was apparent in the data in order to derive a percentage of representation. For example, in response to the daughters’ descriptions of their pre-diagnosis relationship with mothers, the label “Tense or Conflicted” was used to encompass individual responses like ‘tumultuous’ ‘guarded’ or ‘strained.’ The broad category of “Tense or Conflicted” was then combined with two other broad categories, in this case, “Satisfactory” and “Close,” in developing the coding frame for that particular question. This process was primarily undertaken by the first author with additional team members’ reviews serving as reliability checks to the process. Quantitative data were analyzed using SPSS software (version 18). The proportion of respondents in different groups of interest was compared using chi-square tests or Fisher’s exact tests for the case of low expected counts. Differences between groups were considered significant for two sided p-values less than 0.05. Results Demographic information From July 2011 to May 2012, of the 122 women approached, 12 reported their mothers were deceased at the time of diagnosis and thus were not eligible, and 90 (90/110 ¼ 82%) completed the
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A. Ali et al. / The Breast 23 (2014) 50e55
questionnaire. Daughter demographics are summarized in Table 1. The mean age of daughters at the time of the study was 36 years (range 21e43). At breast cancer diagnosis, 61 (68%) were married or in a long term relationship and 49 (54%) had children. Half were of nonCaucasian background. Breast cancer stage, treatment received, family history and mutation status are shown in Table 2. Mothers’ mean age at daughters’ diagnosis was 61 years (range 45e82). At daughter’s diagnosis 45 (50%) mothers were living in the same city as their daughter, with 15 (17%) living in the same house, and 45 (50%) were living in a different city with 24 (27%) living in a different country. Sixteen of the mothers (18%) had a personal history of breast cancer. Disclosing the breast cancer diagnosis Daughters who had not disclosed their diagnosis to their mother Of the 90 daughters participating in this study, seven (8%) had not informed their mother of their diagnosis. The mean age of those seven mothers was 64 (range 57e82), compared to 61 (range 45e 75) for other mothers. All those mothers were living in a different country and five were of Asian background. Two of these mothers had a personal history of breast cancer. Reasons for not informing their mothers included one or more of the following: mother’s old age or health problems, geographical distance, and not wanting to worry mothers. Of these 7 daughters, 6 (86%) were satisfied with their support network. Daughters who had disclosed their diagnosis to their mother Eighty-three of the 90 daughters (92%) informed their mothers of their diagnosis. Of these, 56 (56/83 ¼ 67%) started talking to their mothers about their condition prior to biopsy confirmation. Sixtytwo (62/83 ¼ 75%), of the mothers learned the diagnosis from their daughters and 12 (12/83 ¼ 14%) were present when their daughters were informed. Seventy-nine of the 83 daughters who informed their mother of their diagnosis disclosed the nature of their pre-diagnosis relationship with their mother. The proportion of daughters who turned to mothers for support at diagnosis grouped according to their prediagnosis relationship is shown in Table 3 and compared to their tendency to seek support from their mothers before their diagnosis. Of the 43 (43/79 ¼ 54%) who had turned to their mothers for emotional support over the year prior to diagnosis, 42 (98%) continued to do so after diagnosis. Of the 36 (36/79 ¼ 46%) who had not turned to mothers prior to diagnosis only eight (22%) did so after diagnosis. Eighty daughters elaborated on their mother’s reaction when informed of their diagnosis. Of these 44 (44/80 ¼ 55%) reported that their mother’s immediate reaction was one or a mixture of: shock, disbelief, fear, sadness, and/or devastation. The remaining 36 (36/80 ¼ 45%) daughters stated that, although their mothers were shocked and saddened by hearing of their diagnosis, at the same time they remained strong, comforting and supportive. Daughters whose mothers were perceived as strong: Were less likely to report feeling guilty about causing pain to mothers (3% versus 39%). Were far less likely to report intensification of their fear and sadness prompted by interaction with their mothers (0% versus 30%). Generally (30/36 ¼ 83%) reported that their mothers’ reaction was comforting and gave them strength. Illness attributions Twenty-two (27%) of the 83 daughters who disclosed their diagnosis to their mothers believed their mothers felt responsible to some extent for their daughter developing breast cancer. The
Table 1 Daughters’ demographic information (n ¼ 90). Age group at time of study (within 4 years of diagnosis)
n (%)
21e29 years 30e34 years 35e40 years 41e43 years Marital status at diagnosis Married/partnered Single/never married Separated/divorced Children Yes No Ethnicity UK/European East Asian Southeast Asian Asian (other) Middle Eastern Ashkenazi Jewish Black Hispanic Mix (parents of different ethnic background) Unknown/missing First language English Non-English Highest education level Vocational or technical school Some or all of high school Some college or university Bachelor’s degree or higher Other/missing Practice a religion Christian Muslim Jewish Buddhist
6 18 50 16
(7) (20) (55) (18)
61 (68) 22 (24) 7 (8) 50 (56) 40 (44) 40 20 7 2 6 2 2 1 5 5
(44) (22) (8) (2) (7) (2) (2) (1) (6) (6)
59 (66) 31 (34) 2 2 16 45 25 61 52 5 3 1
(2) (2) (18) (50) (27) (68) (85) (8) (5) (2)
possible reasons perceived by daughters included: mother’s feeling that she did not properly care for daughter and enforce a healthy lifestyle, or that she transmitted her cancer risk to her daughter. However, the daughters of mothers with a personal history of breast cancer were not significantly more likely to view their mothers as feeling responsible for their daughter’s diagnosis (5/ 14 ¼ 36% versus 17/69 ¼ 25%, p ¼ 0.51). Eight (9%) of the 90 daughters (none of the 7 who did not disclose the diagnosis) did in fact report that they felt their mothers were responsible for their having breast cancer (overlap in three cases of mother with breast
Table 2 Tumor characteristics, treatment and risk factors (n ¼ 90). Breast cancer stage
n (%)
Stage I Stage II Stage III Local treatment Therapeutic mastectomy Breast conserving surgery Breast conserving surgery followed by completion mastectomy Radiation treatment Prophylactic mastectomy Breast reconstruction Systemic treatment Chemotherapy Biologic agent Endocrine therapy Family history/genetic testing BRCA1 or BRCA2 mutation Family history of breast and/or ovarian cancer
23 (26) 46 (51) 21 (23) 47 35 8 77 13 7
(52) (39) (9) (86) (14) (8)
77 (86) 29 (32) 68 (76) 11 (12) 48 (53)
A. Ali et al. / The Breast 23 (2014) 50e55 Table 3 Pre-diagnosis relationship and request for support at diagnosis (n ¼ 79). Pre-diagnosis relationship
Over the year prior to diagnosis Turned to mothers for emotional support
Discussed problems with mothers
Turned to mothers for support
Close, n ¼ 60
41 (41/60 ¼ 68%) 0
54 (54/60 ¼ 90%) 4 (4/5 ¼ 80%)
51 9/51 (51/60 ¼ 85%) 2 (2/5 ¼ 40%) 0
6 (6/7 ¼ 86%)
5 (5/7 ¼ 71%)
2/5
3 (3/7 ¼ 43%)
4 (4/7 ¼ 57%)
0
Satisfactory (cordial), n¼5 Tense or 2 conflicted, (2/7 ¼ 29%) n¼7 Distant, n ¼ 7 0
Table 5 Most common difficult issues faced by daughters (n ¼ 90).
At the time of diagnosis Turned to mothers before turning to anyone else for support
Difficult issue
n
Fatigue Anxiety Menopause Breast loss Hair loss Fertility Issues related to children Difficulty concentrating Depression Marriage/relationship issues Dating and sexuality Nausea/vomiting Fear of cancer recurrence/ovarian cancer/death Accommodation/financial worries Body aches Lifestyle changes/weight related changes Being alone during hospital visits
37 33 31 31 25 24a 24 23 22 16 9 8 5 4 3 3 1
a
cancer). Daughters whose mothers had breast cancer were more likely to blame their mothers for their developing breast cancer (4/ 16 ¼ 25% versus 4/74 ¼ 5%, p ¼ 0.031). Three daughters blamed the stress of their conflicted relationship with their mother and one blamed childhood environmental exposure for causing her cancer. The remaining results of this study are relevant only to the 83 women who disclosed their diagnosis to their mothers. Nature of mother’s support Seventy-six of the 83 (92%) daughters who had informed their mothers of the diagnosis reported that their mothers were emotionally and/or practically supportive. Support did not vary according to the mother’s geographic proximity (42/45 ¼ 93% versus 34/38 ¼ 89% p ¼ 0.69). Practical and emotional supports are summarized in Table 4. The most difficult issues faced by daughters other than treatment decisions are shown in Table 5, with 65 daughters (65/83 ¼ 78%) discussing at least some of these issues with their mothers. The nature of the practical and emotional supports provided by mothers did not differ by breast cancer stage, or whether chemotherapy was given. Mothers were more likely to drive and/or accompany their daughters to their appointments if daughters were not married or were not in a long term relationship (67% versus 37%, p ¼ 0.014). Mothers of daughters who had children were more likely to help daughters with food preparation, grocery
Table 4 Types of supports provided by mothers (n ¼ 76). Type of support Practical support Helped with grocery shopping, food preparation, housework Looked after grandchildren Drove/Accompanied daughter’ to clinic visits Financial support Took time off work to support daughters (employed mothers n ¼ 35) Slept over/moved in with daughter during treatment Physically cared for eg. help with bathing after surgery Welcomed daughter families into mother’s residence during treatment Emotional support Talking/listening Daughter discussed risk of recurrence with mothers Positive attitude despite own fears Prayers Encouraged daughter to practice healthy lifestyle.
53
n 61 37 35 28 26 19a 4 3
67 52 5 3 3
a Of the 19 mothers, eight had been living in a different country, and nine in a different city.
13 of the 24 (54%) had at least 1 child at diagnosis.
shopping or household chores (89% versus 67%, p ¼ 0.016). Forty (40/76 ¼ 53%) daughters stated that their mothers’ support was unique, describing it as: unconditional, overwhelming, and/or selfless. Five (36%) of the 14 daughters whose mothers had a personal history of breast cancer reported that their mothers were more understanding, having gone through a breast cancer diagnosis and treatment themselves. Over half of those who responded believed that their mothers could not have been more supportive with comments like “not humanly possible, she was amazing”. The remainder (48%) reported that their mothers could have been more practically and/or emotionally supportive. Examples given of practical supports were: living close to them, caring for their children, helping with food preparation or housework, driving/ accompanying them to their appointments, and providing financial support. Examples given of how a mother could have been more emotionally supportive included being more open about her own personal fears and distress (rather than masking it), or disclosing daughter’s diagnosis to friends and family to enable them to provide emotional and practical support. In general there were no differences in reported supports provided by mothers with (n ¼ 14) or without a past history of breast cancer. Two exceptions were a trend to greater financial support from mothers who had had breast cancer (57% vs. 29%, p ¼ 0.062), and turning to mothers to discuss fear of cancer recurrence reported less often by daughters whose mothers had breast cancer (36% versus 72% p ¼ 0.013). Effect of breast cancer on the relationship Of the 83 daughters who informed their mother of their diagnosis, 79 disclosed the nature of their pre-diagnosis relationship. Forty-three (43/79 ¼ 54%) daughters reported that breast cancer had a favorable impact on their relationship with their mother, causing them to feel closer and value each other more, with mothers showing more affection, listening more, and being more sensitive to their daughter’s needs. For the remaining 36 daughters, the motheredaughter relationship was reported to be unchanged (34/79 ¼ 43%) or more distant (2/79 ¼ 3%) after the diagnosis. The latter two daughters mentioned that they had expected more support from their mothers. Daughters reporting mothers being practically and/or emotionally supportive were more likely to report a favorable impact of diagnosis on the mother daughter relationship compared to those who did not (58% versus 17%, p ¼ 0.087). Having a close pre-diagnosis relationship, daughter’s breast cancer stage, daughter having chemotherapy, daughter’s
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marital status and parity, or mother having a previous history of breast cancer did not predict the impact of the diagnosis on the motheredaughter relationship. Formal supports for mothers Thirty-two of the 83 women (39%) felt their mothers did not have adequate psychosocial support at the time of their diagnosis and/or during their treatment. Fifty-nine (71%) daughters reported that health care professionals could help mothers. Forty-two believed their mothers needed more information explaining the investigations, treatment, prognosis, and unique needs of young women with breast cancer, seven believing written information pamphlets would be sufficient, while 15 indicated that professional education sessions were necessary. Thirty-six stated that support groups for mothers would be most helpful. Several indicated that a good support system for mothers would not only lighten the burden on mothers but would help mothers support their daughters more effectively. Words of wisdom The daughters’ advice to other young women newly diagnosed with breast cancer with regards to their mothers included: trying to understand their mothers’ feelings in trying to care for their daughters while trying themselves to cope; being honest with their mother about their own feelings and needs; enjoying their relationship with their mother; and showing love and appreciation. Daughters’ advice to mothers of young women with breast cancer included: supporting daughters in every way possible, remaining optimistic and strong, and accepting help and support for themselves. Discussion Family bonds and emotional supports are critical for the coping and wellbeing of young women with breast cancer [16]. This is the first study to specifically explore young women’s perceptions of their relationships with their mothers before a breast cancer diagnosis, the impact of the subsequent diagnosis on that relationship, and the perceived support needs of their mothers. The majority of mothers in our study learned of the cancer diagnosis from their daughters, and over one-fifth of the daughters reported feeling guilty of hurting their mothers. Cancer patients are not only concerned with their own suffering but also the suffering of family members [17]. Studies have shown that cancer patients experience a sense of guilt about burdening their family [18], struggle with how best to inform their family of their diagnosis, and report uneven guidance and support regarding these issues from health care professionals [19]. In our study over half the daughters reported that the breast cancer diagnosis resulted in the motheredaughter relationship becoming closer. Daughters reporting mothers being emotionally or practically supportive were more likely to report a favorable impact of the breast cancer diagnosis on their relationship with their mothers, irrespective of the pre-diagnosis relationship. The majority of daughters had first turned to their partner for support at diagnosis (where there was a partner), and had reported being satisfied with their support network. These daughters still found their mother to be an important source of both practical and emotional support right from the time the diagnosis was first suspected. In our study we found that mothers were considered to be supportive irrespective of the mother’s geographic
proximity, daughter’s breast cancer stage or whether daughters had chemotherapy. However, the type of support provided by the daughters was affected by the daughter’s marital status and parity. Many daughters expressed that mother could have been more supportive by caring for their children, helping with house chores and being open about her feelings. Over a third of daughters did not think their mothers had adequate support for themselves. Most of these suggested that providing additional written information and psychological counseling through support groups to the mothers to address their concerns and fears about their daughters’ diagnosis, would benefit not only the mothers, but also the young women with breast cancer. Despite the very important role of the mothers in our study, the practical and emotional toll on these mothers appears to have been high. Over a quarter of daughters who informed their mothers of their diagnosis believed their mothers felt responsible to some extent for their developing breast cancer. The literature has reported parental concern and guilt about childhood stress and/or environmental exposures [20], and transmitting germline mutations as cause of their children developing cancer [21]. Family members’ reaction to cancer affects patients and vice versa [22]. Several studies have shown high levels of breast cancerrelated distress in female first-degree relatives (mother, sister, or daughter) of breast cancer patients [23e27]. Zapka et al. [28] reported more breast cancer specific distress in mothers compared to sisters and daughters of newly diagnosed breast cancer patients. Cancer-related distress among family members may in turn negatively impact on their ability to maximally support the affected young woman [8,13,29]. The psychological toll of caring for a family member with cancer has been shown to be far worse without a support network for caregivers and when there are relationship difficulties between the family member and the patient [30]. In recent times there has been growing recognition of the importance of supporting family caregivers not only for the benefit of the caregiver and cancer patient, but also as an aid to the health care team in performing their roles [31,32]. Nevertheless, such supports are generally lacking and family members are often unprepared to handle the complex demands that result from a breast cancer diagnosis [33,34]. All this suggests the need for future studies to address the benefit of formal supports specifically for mothers of young daughters with breast cancer. Such supports could range from written materials to socioeconomically and culturally sensitive support groups. There are several limitations to this study. To our knowledge, no validated instrument currently exists to assess the impact of a breast cancer diagnosis in young women on their relationship with their mothers. Our draft questionnaire was developed by a panel of interdisciplinary experts and young breast cancer survivors to ensure clarity and content, but it was not statistically validated. Our questionnaires were not completely anonymous, (so that they could be linked to our PYNK database), which may have resulted in less open and honest responses. Our mixed methodology design did not provide as detailed an assessment as a purely qualitative design might have, such as conducting indepth interviews with young women and/or their mothers. Although we approached all potentially eligible young women and had a high response rate of 82%, participants may have more likely than non-participants to have had a good relationship with their mothers, and to turn to their mothers for support. In order to maintain brevity of the questionnaire and to maximize response to all items, the psychological state of participants at the time of the study, or as recalled to be at the time of diagnosis, was not assessed. It is conceivable that this could have affected the daughters’ views of their mothers’ supports and the nature of their relationship with their mothers. In addition, we did not
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take into account the views of the mothers. In depth interviews of both mothers and daughters simultaneously in a future study would be an interesting addition to this field and might have future implications for practice. Furthermore, our study represents the experience of a multi-ethnic group of women at a single tertiary center in a large city, and the experience of women with different demographics and at smaller centers may be different. One third of the daughters were non-native English speakers which may have affected their ability to answer some of the personal questions. Despite these limitations, our study serves as a first step in exploring a complex and important subject that merits further attention. In conclusion, our study shows the critical role of the practical and emotional supports provided by mothers to their young daughters with breast cancer, which frequently result in a favorable impact on the motheredaughter relationship. The nature of the pre-diagnosis relationship did not seem to affect the mothere daughter relationship after a breast cancer diagnosis. The degree of support from a mother was not affected by her daughter’s breast cancer stage or need for chemotherapy, but the nature of that support was influenced by the daughter’s marital status and parity. Young women with breast cancer should be encouraged to turn to their mothers and not mask their feelings, as mothers are an important source of support. However, despite the emotional and physical toll on these mothers there are limited supports available to them. Accordingly, future studies should address the effects of a breast cancer diagnosis in a young daughter from the mother’s perspective, and the benefit of formal, culturally sensitive supports for these mothers. Ethical standards This study was conducted in accordance with the recommendation of Sunnybrook Health Sciences Centre’s Research Ethics Board. Role of the funding source There are no sources of funding to declare. Conflict of interest statement We have no conflict of interest to declare. Acknowledgments We would like to thank Christel Helwig, Nim Li, Rodica Mandel and Kimberly Hill for their help in data acquisition. References [1] Andres CK, Johnson R, Litton J, Phillips M, Bleyer A. Breast cancer before age 40 Years. Semin Oncol 2009;36(3):237e49. [2] Gelmon K, Partridge AH, Morrow M, Davidson NE. Breast cancer in young women: epidemiology, treatment, and survivorship issues. In: 2005 Educational Book. American Society of Clinical Oncology; 2005. p. 61e7. [3] Avis NE, Crawford S, Manuel J. Quality of life among younger women with breast cancer. J Clin Oncol 2005;23(15):3322e30. [4] Avis NE, Crawford S, Manuel J. Psychosocial problems among younger women with breast cancer. Psychooncology 2004;13(5):295e308. [5] Warner E. Impact of MRI surveillance and breast cancer detection in young women with BRCA mutations. Ann Oncol 2011 Jan;22(Suppl. 1):i44e9.
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[6] Son BH, Ahn SH, Kim SW, et al. Prevalence of BRCA1 and BRCA2 mutations in non-familial breast cancer patients with high risks in Korea: the Korean Hereditary Breast Cancer (KOHBRA) Study. Breast Cancer Res Treat 2012 Jun;133(3):1143e52. [7] Sprung BR, Janotha BL, Steckel AJ. The lived experience of breast cancer patients and couple distress. J Am Acad Nurse Pract 2011 Nov;23(11):619e27. [8] Walsh SR, Manuel JC, Avis NE. The impact of breast cancer on younger women’s relationships with their partner and children. Families Syst Health 2005;23:80e93. [9] Naaman S, Radwan K, Johnson S. Coping with early breast cancer: couple adjustment processes and couple-based intervention. Psychiatry 2009 Winter;72(4):321e45. [10] Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psychooncology 2007 Feb;16(2):101e26. [11] Grabiak BR, Bender CM, Puskar KR. The impact of parental cancer on the adolescent: an analysis of the literature. Psychooncology 2007 Feb;16(2): 127e37. [12] Kim S, Ko YH, Jun EY. The impact of breast cancer on mother-child relationships in Korea. Psychooncology 2012 Jun;21(6):640e6. [13] Stiffler D, Haase J, Hosei B, Barada B. Parenting experiences with adolescent daughters when mothers have breast cancer. Oncol Nurs Forum 2008 Jan;35(1):113e20. [14] Ali A, Warner E. PYNK: breast cancer program for young women. Current Oncol 2013 Feb;20(1):e34e9. [15] Kimberly A, Neuendorf. The content analysis guidebook. http://books.google. co.uk/books?id¼huPVtmu4sigC&printsec¼frontcover&dq¼Contentþ analysisþ2ndþedition&hl¼en&sa¼X&ei¼f8ogUo_MKtWp4APw-oHYDw& ved¼0CFMQ6AEwAw#v¼onepage&q¼Content%20analysis%202nd% 20edition&f¼false; 2002. [16] Friedman L, Nelson D, Smith F, Baer P, Lane M, Dworkin R. Women with breast cancer: perception of family functioning and adjustment to illness. J Psychosomatic Medication 1988;50:529e40. [17] Dow KH, Ferrell BR, Leigh S, Ly J, Gulasekaram P. An evaluation of the quality of life among long-term survivors of breast cancer. Breast Cancer Res Treat 1996;39(3):261e73. [18] da Silva G, dos Santos MA. Stressors in breast cancer post-treatment: a qualitative approach. Rev Lat Am Enfermagem 2010 JuleAug;18(4):688e95. [19] Semple CJ, McCance T. Parents’ experience of cancer who have young children: a literature review. Cancer Nurs 2010;33:110e8. [20] Ruccione KS, Waskerwitz M, Buckley J, Perin G, Hammond GD. What caused my child’s cancer? Parents’ responses to an epidemiology study of childhood cancer. J Pediatr Oncol Nurs 1994 Apr;11(2):71e84. [21] Lynch HT, Snyder C, Lynch JF, et al. Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families. Cancer Genet Cytogenet 2006 Mar;165(2):91e7. [22] Dorval M, Guay S, Mondor M, et al. Couples who get closer after breast cancer: frequency and predictors in a prospective investigation. J Clin Oncol 2005 May 20;23(15):3588e96. [23] Kash KM, Holland JC, Halper MS, Miller DG. Psychological distress and surveillance behaviors of women with a family history of breast cancer. J Natl Cancer Inst 1992 Jan 1;84(1):24e30. [24] Lerman C, Daly M, Sands C, et al. Mammography adherence and psychological distress among women at risk for breast cancer. J Natl Cancer Inst 1993 Jul 7;85(13):1074e80. [25] Mosher CE, Danoff-Burg S. Psychosocial impact of parental cancer in adulthood: a conceptual and empirical review. Clin Psychol Rev 2005 May;25(3): 365e82. [26] Raveis VH, Pretter S. Existential plight of adult daughters following their mother’s breast cancer diagnosis. Psychooncology 2005 Jan;14(1):49e60. [27] Erblich J, Bovbjerg DH, Valdimarsdottir HB. Looking forward and back: distress among women at familial risk for breast cancer. Ann Behav Med 2000 Winter;22(1):53e9. [28] Zapka J, Fisher G, Lemon S, Clemow L, Fletcher K. Relationship and distress in relatives of breast cancer patients. Families Syst Health 2006;24(2):198e212. [29] O’Mahoney JM, Carroll RA. The impact of breast cancer and its treatment on marital functioning. J Clin Psychol Med Settings 1997;4:397e415. [30] Pitceathly C, Maguire P. The psychological impact of cancer on patients’ partners and other key relatives: a review. Eur J Cancer 2003;39:1517e24. [31] Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol 2012 Apr 10;30(11):1227e34. [32] Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol 2004 MareApr;2(2):145e55. [33] Northouse L. Helping families of patients with cancer. Oncol Nurs Forum 2005 Jul 1;32(4):743e50. [34] Feldman BN, Broussard CA. Men’s adjustment to their partners’ breast cancer: a dyadic coping perspective. Health Soc Work 2006;31(2):117e27.
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The Breast journal homepage: www.elsevier.com/brst
Original article
The impact of a breast cancer diagnosis in young women on their relationship with their mothers Asma Ali a, *, Karen Fergus b, Frances C. Wright c, Kathleen I. Pritchard a, Alex Kiss d, Ellen Warner a a
Department of Medicine, Division of Medical Oncology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, University of Toronto, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada York University, Department of Psychology, Sunnybrook Health Sciences Centre, Odette Cancer Centre, Patient and Family Support, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada c Department of Surgery, Division of General Surgery, Sunnybrook Health Sciences Centre, Odette Cancer Centre, University of Toronto, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada d Department of Research Design and Biostatistics, Sunnybrook Health Sciences Centre, Odette Cancer Centre, University of Toronto, 2075 Bayview Avenue, Toronto, Ontario M4N 3M5, Canada b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 28 April 2013 Received in revised form 1 September 2013 Accepted 14 October 2013
Background: For young women with breast cancer mothers might either be a source of support or of increased stress, depending on the premorbid relationship and on the psychological effect of the daughter’s diagnosis on her mother. Objectives: To examine the effects of a breast cancer diagnosis on young women’s relationships with their mothers and the possible support needs of these mothers from the daughters’ perspective. Patients and methods: We developed and pre-tested a self-administered questionnaire on 10 survivors of breast cancer diagnosed age 40. Then, consecutive recurrence-free young women diagnosed with breast cancer were asked to complete the modified questionnaire. Results: Of 110 daughters approached from July/11 to May/12, 90 (82%) participated. In 11 cases (13%), the daughters had turned to their mothers before approaching anyone else. Of the 83 daughters who disclosed their diagnosis to their mothers, 76 (92%) stated their mothers had been emotionally and/or practically supportive, and 43 (54%) reported that the breast cancer diagnosis had a favorable impact on their relationship with their mothers. Of the 35 employed mothers, 26 had taken time off from work to support their daughters. Nineteen mothers, eight of whom had been living in a different country, had slept over or moved in with daughters during their treatment. Twenty-two daughters believed their mothers felt responsible to some extent for their developing breast cancer. Fifty-nine daughters indicated that health care professionals could help mothers by providing information pamphlets, education sessions, and linking to support groups. Conclusion: Mothers are an important source of support for young daughters with breast cancer, with the motheredaughter relationship frequently becoming closer after the diagnosis. However, the practical and emotional burden on mothers appears to be high. Future studies should address the effects of a breast cancer diagnosis in young daughters from the mothers’ perspective, and the benefit of formal supports for these mothers. Ó 2013 Elsevier Ltd. All rights reserved.
Keywords: Breast cancer Young women Motheredaughter Relationship Psychosocial Supports
Background Although in developed countries fewer than 10% of women are diagnosed with breast cancer at age 40 or younger [1] they have a * Corresponding author. Present address: Division of Medical Oncology, Comprehensive Cancer Centre, King Fahad Medical City, P.O. Box 59046, Riyadh 11525, Saudi Arabia. Tel.: þ966 288 9999x16825. E-mail address: [email protected] (A. Ali). 0960-9776/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.breast.2013.10.004
poorer prognosis than their older counterparts and bear a disproportionate degree of physical and psychological morbidity [1,2]. Psychological challenges to young breast cancer patients include greater likelihood of mastectomy, loss of fertility, premature menopause, disruption of studies or new careers, strain on relationships with partners, childcare issues, financial pressures, and greater likelihood of a BRCA mutation [3e6]. Although psychosocial research directed to women in this age group is receiving more attention, the majority of studies have focused on the ‘couple’
A. Ali et al. / The Breast 23 (2014) 50e55
51
Research study
relationship, and effects of the diagnosis on young children and adolescent offspring [7e13]. For women in their 20s and 30s we would expect the mother daughter relationship to be uniquely affected by breast cancer, both because of the dependence many young women still have on their mothers, as well as the devastating impact on the mothers of this diagnosis in their daughters. To the best of our knowledge, no study has been published to date looking at the effects of a breast cancer diagnosis on the motheredaughter relationship, nor on the possible support needs of these mothers. Understanding this could help health care professionals develop interventions to improve this relationship and ultimately lower psychosocial morbidity in the daughters and mothers. We initiated a study to better comprehend the general impact of breast cancer in a young woman on her relationship with her mother from the daughter’s perspective, and the possible support needs of the mother, and to determine what pre-diagnosis, patient, tumor and treatment factors might predict how breast cancer will affect the relationship and/or affect supports provided by mothers.
In February 2008 our center launched a clinical and research program (PYNK: Breast Cancer Program for Young Women) for women aged 40 and younger newly diagnosed with breast cancer [14]. Consenting women have their clinical, epidemiological and family history data entered in a prospective database. For this study, consecutive recurrence-free women, aged 40 or younger at diagnosis and within four years of diagnosis, who had previously consented to be part of the PYNK program, were identified and approached at their regular oncology follow-up visit. If it was determined that their mothers were alive at the time of their breast cancer diagnosis, they were invited to participate in the study. Women scheduled to see their oncologist more than six months from the date the study had opened were mailed a prepaid envelope with a copy of the questionnaire, the consent form, and an introductory letter. A follow up reminder phone call was made to non-responders, and a second mailing was sent out to those who so requested.
Patients and methods
Linkage to PYNK database
The pilot and the current research studies were reviewed and approved by our Institutional Research Ethics Board. Through a) a literature review, b) regular meetings of an interdisciplinary panel of experts in psychology, research methodology, and breast oncology (AA, KF, FW, KP, EW), and c) informal interviews with three young breast cancer survivors, key questions were identified relating to the effect of a breast cancer diagnosis in young women on their relationship with their mothers, and the possible support needs of these mothers. Corresponding questionnaire items were then drafted.
Each questionnaire had a study number to allow abstraction of relevant data from the PYNK database. This data included demographics not captured in the questionnaire, family history of cancer, genetic counseling and testing results, breast cancer stage, and treatments received.
Pilot study From January 2011 to March 2011, 10 breast cancer survivors aged 40 or younger at diagnosis, whose mothers were still alive at the time of the study, were identified through a search of the medical oncology follow up clinic list at Sunnybrook Odette Cancer Centre, and were asked to complete the 52 item draft questionnaire, assessing it for clarity, content and sensitivity. The questionnaire was a mix of closed ended items on a 5 point Likert scale, and open ended questions with room to elaborate. Participants were encouraged to suggest alteration, deletion or addition of items to improve the questionnaire. The draft questionnaire was modified based on participants’ feedback. Some items were changed from the open ended format to relevant tick box options after noting a limited range of responses. One item was reported as unclear and was reworded. Some items were added at the suggestion of the study subjects, and others including the motheredaughter relationship during childhood or teenage years, and the mother’s role in her daughter’s treatment decision making were deemed to be less relevant and removed. Item retention was guided by the desire to maintain relevance and cover the breadth of an unexplored subject, tempered by awareness of the sensitivity of the topic and the limited time of the potential participants. Thirty-eight items were retained after review by the interdisciplinary panel, and the modified 38- item questionnaire was used in the subsequent research study. The questionnaire included the following: demographics of mother and daughter, any history of breast cancer in the mother, illness attributions, nature of the participant’s relationship with her mother pre and post diagnosis, sources of support to participant, type and value of supports provided by mother, perceived support needs of mother, and participant’s advice to other young women newly diagnosed with breast cancer vis-a-vis their relationship with their mothers.
Data analysis Content analysis was performed with the focus of the results being on the frequency with which certain responses were offered [15]. The following procedure was used to derive the categorization scheme upon which the content analysis for this study was based: textual analysis was carried out using N-Vivo 9 software. Responses to each question were carefully reviewed in order to discern the key message or messages within the response. These units of meaning were then labeled and these labels, in turn, formed the basis for the coding frame for that particular item/question. The number of codes or categories within each frame ranged from 3 to 12 depending on the nature of the question. Once finalized, the coding frame was systematically applied to all responses for a given question, and each code was counted for the number of times it was apparent in the data in order to derive a percentage of representation. For example, in response to the daughters’ descriptions of their pre-diagnosis relationship with mothers, the label “Tense or Conflicted” was used to encompass individual responses like ‘tumultuous’ ‘guarded’ or ‘strained.’ The broad category of “Tense or Conflicted” was then combined with two other broad categories, in this case, “Satisfactory” and “Close,” in developing the coding frame for that particular question. This process was primarily undertaken by the first author with additional team members’ reviews serving as reliability checks to the process. Quantitative data were analyzed using SPSS software (version 18). The proportion of respondents in different groups of interest was compared using chi-square tests or Fisher’s exact tests for the case of low expected counts. Differences between groups were considered significant for two sided p-values less than 0.05. Results Demographic information From July 2011 to May 2012, of the 122 women approached, 12 reported their mothers were deceased at the time of diagnosis and thus were not eligible, and 90 (90/110 ¼ 82%) completed the
52
A. Ali et al. / The Breast 23 (2014) 50e55
questionnaire. Daughter demographics are summarized in Table 1. The mean age of daughters at the time of the study was 36 years (range 21e43). At breast cancer diagnosis, 61 (68%) were married or in a long term relationship and 49 (54%) had children. Half were of nonCaucasian background. Breast cancer stage, treatment received, family history and mutation status are shown in Table 2. Mothers’ mean age at daughters’ diagnosis was 61 years (range 45e82). At daughter’s diagnosis 45 (50%) mothers were living in the same city as their daughter, with 15 (17%) living in the same house, and 45 (50%) were living in a different city with 24 (27%) living in a different country. Sixteen of the mothers (18%) had a personal history of breast cancer. Disclosing the breast cancer diagnosis Daughters who had not disclosed their diagnosis to their mother Of the 90 daughters participating in this study, seven (8%) had not informed their mother of their diagnosis. The mean age of those seven mothers was 64 (range 57e82), compared to 61 (range 45e 75) for other mothers. All those mothers were living in a different country and five were of Asian background. Two of these mothers had a personal history of breast cancer. Reasons for not informing their mothers included one or more of the following: mother’s old age or health problems, geographical distance, and not wanting to worry mothers. Of these 7 daughters, 6 (86%) were satisfied with their support network. Daughters who had disclosed their diagnosis to their mother Eighty-three of the 90 daughters (92%) informed their mothers of their diagnosis. Of these, 56 (56/83 ¼ 67%) started talking to their mothers about their condition prior to biopsy confirmation. Sixtytwo (62/83 ¼ 75%), of the mothers learned the diagnosis from their daughters and 12 (12/83 ¼ 14%) were present when their daughters were informed. Seventy-nine of the 83 daughters who informed their mother of their diagnosis disclosed the nature of their pre-diagnosis relationship with their mother. The proportion of daughters who turned to mothers for support at diagnosis grouped according to their prediagnosis relationship is shown in Table 3 and compared to their tendency to seek support from their mothers before their diagnosis. Of the 43 (43/79 ¼ 54%) who had turned to their mothers for emotional support over the year prior to diagnosis, 42 (98%) continued to do so after diagnosis. Of the 36 (36/79 ¼ 46%) who had not turned to mothers prior to diagnosis only eight (22%) did so after diagnosis. Eighty daughters elaborated on their mother’s reaction when informed of their diagnosis. Of these 44 (44/80 ¼ 55%) reported that their mother’s immediate reaction was one or a mixture of: shock, disbelief, fear, sadness, and/or devastation. The remaining 36 (36/80 ¼ 45%) daughters stated that, although their mothers were shocked and saddened by hearing of their diagnosis, at the same time they remained strong, comforting and supportive. Daughters whose mothers were perceived as strong: Were less likely to report feeling guilty about causing pain to mothers (3% versus 39%). Were far less likely to report intensification of their fear and sadness prompted by interaction with their mothers (0% versus 30%). Generally (30/36 ¼ 83%) reported that their mothers’ reaction was comforting and gave them strength. Illness attributions Twenty-two (27%) of the 83 daughters who disclosed their diagnosis to their mothers believed their mothers felt responsible to some extent for their daughter developing breast cancer. The
Table 1 Daughters’ demographic information (n ¼ 90). Age group at time of study (within 4 years of diagnosis)
n (%)
21e29 years 30e34 years 35e40 years 41e43 years Marital status at diagnosis Married/partnered Single/never married Separated/divorced Children Yes No Ethnicity UK/European East Asian Southeast Asian Asian (other) Middle Eastern Ashkenazi Jewish Black Hispanic Mix (parents of different ethnic background) Unknown/missing First language English Non-English Highest education level Vocational or technical school Some or all of high school Some college or university Bachelor’s degree or higher Other/missing Practice a religion Christian Muslim Jewish Buddhist
6 18 50 16
(7) (20) (55) (18)
61 (68) 22 (24) 7 (8) 50 (56) 40 (44) 40 20 7 2 6 2 2 1 5 5
(44) (22) (8) (2) (7) (2) (2) (1) (6) (6)
59 (66) 31 (34) 2 2 16 45 25 61 52 5 3 1
(2) (2) (18) (50) (27) (68) (85) (8) (5) (2)
possible reasons perceived by daughters included: mother’s feeling that she did not properly care for daughter and enforce a healthy lifestyle, or that she transmitted her cancer risk to her daughter. However, the daughters of mothers with a personal history of breast cancer were not significantly more likely to view their mothers as feeling responsible for their daughter’s diagnosis (5/ 14 ¼ 36% versus 17/69 ¼ 25%, p ¼ 0.51). Eight (9%) of the 90 daughters (none of the 7 who did not disclose the diagnosis) did in fact report that they felt their mothers were responsible for their having breast cancer (overlap in three cases of mother with breast
Table 2 Tumor characteristics, treatment and risk factors (n ¼ 90). Breast cancer stage
n (%)
Stage I Stage II Stage III Local treatment Therapeutic mastectomy Breast conserving surgery Breast conserving surgery followed by completion mastectomy Radiation treatment Prophylactic mastectomy Breast reconstruction Systemic treatment Chemotherapy Biologic agent Endocrine therapy Family history/genetic testing BRCA1 or BRCA2 mutation Family history of breast and/or ovarian cancer
23 (26) 46 (51) 21 (23) 47 35 8 77 13 7
(52) (39) (9) (86) (14) (8)
77 (86) 29 (32) 68 (76) 11 (12) 48 (53)
A. Ali et al. / The Breast 23 (2014) 50e55 Table 3 Pre-diagnosis relationship and request for support at diagnosis (n ¼ 79). Pre-diagnosis relationship
Over the year prior to diagnosis Turned to mothers for emotional support
Discussed problems with mothers
Turned to mothers for support
Close, n ¼ 60
41 (41/60 ¼ 68%) 0
54 (54/60 ¼ 90%) 4 (4/5 ¼ 80%)
51 9/51 (51/60 ¼ 85%) 2 (2/5 ¼ 40%) 0
6 (6/7 ¼ 86%)
5 (5/7 ¼ 71%)
2/5
3 (3/7 ¼ 43%)
4 (4/7 ¼ 57%)
0
Satisfactory (cordial), n¼5 Tense or 2 conflicted, (2/7 ¼ 29%) n¼7 Distant, n ¼ 7 0
Table 5 Most common difficult issues faced by daughters (n ¼ 90).
At the time of diagnosis Turned to mothers before turning to anyone else for support
Difficult issue
n
Fatigue Anxiety Menopause Breast loss Hair loss Fertility Issues related to children Difficulty concentrating Depression Marriage/relationship issues Dating and sexuality Nausea/vomiting Fear of cancer recurrence/ovarian cancer/death Accommodation/financial worries Body aches Lifestyle changes/weight related changes Being alone during hospital visits
37 33 31 31 25 24a 24 23 22 16 9 8 5 4 3 3 1
a
cancer). Daughters whose mothers had breast cancer were more likely to blame their mothers for their developing breast cancer (4/ 16 ¼ 25% versus 4/74 ¼ 5%, p ¼ 0.031). Three daughters blamed the stress of their conflicted relationship with their mother and one blamed childhood environmental exposure for causing her cancer. The remaining results of this study are relevant only to the 83 women who disclosed their diagnosis to their mothers. Nature of mother’s support Seventy-six of the 83 (92%) daughters who had informed their mothers of the diagnosis reported that their mothers were emotionally and/or practically supportive. Support did not vary according to the mother’s geographic proximity (42/45 ¼ 93% versus 34/38 ¼ 89% p ¼ 0.69). Practical and emotional supports are summarized in Table 4. The most difficult issues faced by daughters other than treatment decisions are shown in Table 5, with 65 daughters (65/83 ¼ 78%) discussing at least some of these issues with their mothers. The nature of the practical and emotional supports provided by mothers did not differ by breast cancer stage, or whether chemotherapy was given. Mothers were more likely to drive and/or accompany their daughters to their appointments if daughters were not married or were not in a long term relationship (67% versus 37%, p ¼ 0.014). Mothers of daughters who had children were more likely to help daughters with food preparation, grocery
Table 4 Types of supports provided by mothers (n ¼ 76). Type of support Practical support Helped with grocery shopping, food preparation, housework Looked after grandchildren Drove/Accompanied daughter’ to clinic visits Financial support Took time off work to support daughters (employed mothers n ¼ 35) Slept over/moved in with daughter during treatment Physically cared for eg. help with bathing after surgery Welcomed daughter families into mother’s residence during treatment Emotional support Talking/listening Daughter discussed risk of recurrence with mothers Positive attitude despite own fears Prayers Encouraged daughter to practice healthy lifestyle.
53
n 61 37 35 28 26 19a 4 3
67 52 5 3 3
a Of the 19 mothers, eight had been living in a different country, and nine in a different city.
13 of the 24 (54%) had at least 1 child at diagnosis.
shopping or household chores (89% versus 67%, p ¼ 0.016). Forty (40/76 ¼ 53%) daughters stated that their mothers’ support was unique, describing it as: unconditional, overwhelming, and/or selfless. Five (36%) of the 14 daughters whose mothers had a personal history of breast cancer reported that their mothers were more understanding, having gone through a breast cancer diagnosis and treatment themselves. Over half of those who responded believed that their mothers could not have been more supportive with comments like “not humanly possible, she was amazing”. The remainder (48%) reported that their mothers could have been more practically and/or emotionally supportive. Examples given of practical supports were: living close to them, caring for their children, helping with food preparation or housework, driving/ accompanying them to their appointments, and providing financial support. Examples given of how a mother could have been more emotionally supportive included being more open about her own personal fears and distress (rather than masking it), or disclosing daughter’s diagnosis to friends and family to enable them to provide emotional and practical support. In general there were no differences in reported supports provided by mothers with (n ¼ 14) or without a past history of breast cancer. Two exceptions were a trend to greater financial support from mothers who had had breast cancer (57% vs. 29%, p ¼ 0.062), and turning to mothers to discuss fear of cancer recurrence reported less often by daughters whose mothers had breast cancer (36% versus 72% p ¼ 0.013). Effect of breast cancer on the relationship Of the 83 daughters who informed their mother of their diagnosis, 79 disclosed the nature of their pre-diagnosis relationship. Forty-three (43/79 ¼ 54%) daughters reported that breast cancer had a favorable impact on their relationship with their mother, causing them to feel closer and value each other more, with mothers showing more affection, listening more, and being more sensitive to their daughter’s needs. For the remaining 36 daughters, the motheredaughter relationship was reported to be unchanged (34/79 ¼ 43%) or more distant (2/79 ¼ 3%) after the diagnosis. The latter two daughters mentioned that they had expected more support from their mothers. Daughters reporting mothers being practically and/or emotionally supportive were more likely to report a favorable impact of diagnosis on the mother daughter relationship compared to those who did not (58% versus 17%, p ¼ 0.087). Having a close pre-diagnosis relationship, daughter’s breast cancer stage, daughter having chemotherapy, daughter’s
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marital status and parity, or mother having a previous history of breast cancer did not predict the impact of the diagnosis on the motheredaughter relationship. Formal supports for mothers Thirty-two of the 83 women (39%) felt their mothers did not have adequate psychosocial support at the time of their diagnosis and/or during their treatment. Fifty-nine (71%) daughters reported that health care professionals could help mothers. Forty-two believed their mothers needed more information explaining the investigations, treatment, prognosis, and unique needs of young women with breast cancer, seven believing written information pamphlets would be sufficient, while 15 indicated that professional education sessions were necessary. Thirty-six stated that support groups for mothers would be most helpful. Several indicated that a good support system for mothers would not only lighten the burden on mothers but would help mothers support their daughters more effectively. Words of wisdom The daughters’ advice to other young women newly diagnosed with breast cancer with regards to their mothers included: trying to understand their mothers’ feelings in trying to care for their daughters while trying themselves to cope; being honest with their mother about their own feelings and needs; enjoying their relationship with their mother; and showing love and appreciation. Daughters’ advice to mothers of young women with breast cancer included: supporting daughters in every way possible, remaining optimistic and strong, and accepting help and support for themselves. Discussion Family bonds and emotional supports are critical for the coping and wellbeing of young women with breast cancer [16]. This is the first study to specifically explore young women’s perceptions of their relationships with their mothers before a breast cancer diagnosis, the impact of the subsequent diagnosis on that relationship, and the perceived support needs of their mothers. The majority of mothers in our study learned of the cancer diagnosis from their daughters, and over one-fifth of the daughters reported feeling guilty of hurting their mothers. Cancer patients are not only concerned with their own suffering but also the suffering of family members [17]. Studies have shown that cancer patients experience a sense of guilt about burdening their family [18], struggle with how best to inform their family of their diagnosis, and report uneven guidance and support regarding these issues from health care professionals [19]. In our study over half the daughters reported that the breast cancer diagnosis resulted in the motheredaughter relationship becoming closer. Daughters reporting mothers being emotionally or practically supportive were more likely to report a favorable impact of the breast cancer diagnosis on their relationship with their mothers, irrespective of the pre-diagnosis relationship. The majority of daughters had first turned to their partner for support at diagnosis (where there was a partner), and had reported being satisfied with their support network. These daughters still found their mother to be an important source of both practical and emotional support right from the time the diagnosis was first suspected. In our study we found that mothers were considered to be supportive irrespective of the mother’s geographic
proximity, daughter’s breast cancer stage or whether daughters had chemotherapy. However, the type of support provided by the daughters was affected by the daughter’s marital status and parity. Many daughters expressed that mother could have been more supportive by caring for their children, helping with house chores and being open about her feelings. Over a third of daughters did not think their mothers had adequate support for themselves. Most of these suggested that providing additional written information and psychological counseling through support groups to the mothers to address their concerns and fears about their daughters’ diagnosis, would benefit not only the mothers, but also the young women with breast cancer. Despite the very important role of the mothers in our study, the practical and emotional toll on these mothers appears to have been high. Over a quarter of daughters who informed their mothers of their diagnosis believed their mothers felt responsible to some extent for their developing breast cancer. The literature has reported parental concern and guilt about childhood stress and/or environmental exposures [20], and transmitting germline mutations as cause of their children developing cancer [21]. Family members’ reaction to cancer affects patients and vice versa [22]. Several studies have shown high levels of breast cancerrelated distress in female first-degree relatives (mother, sister, or daughter) of breast cancer patients [23e27]. Zapka et al. [28] reported more breast cancer specific distress in mothers compared to sisters and daughters of newly diagnosed breast cancer patients. Cancer-related distress among family members may in turn negatively impact on their ability to maximally support the affected young woman [8,13,29]. The psychological toll of caring for a family member with cancer has been shown to be far worse without a support network for caregivers and when there are relationship difficulties between the family member and the patient [30]. In recent times there has been growing recognition of the importance of supporting family caregivers not only for the benefit of the caregiver and cancer patient, but also as an aid to the health care team in performing their roles [31,32]. Nevertheless, such supports are generally lacking and family members are often unprepared to handle the complex demands that result from a breast cancer diagnosis [33,34]. All this suggests the need for future studies to address the benefit of formal supports specifically for mothers of young daughters with breast cancer. Such supports could range from written materials to socioeconomically and culturally sensitive support groups. There are several limitations to this study. To our knowledge, no validated instrument currently exists to assess the impact of a breast cancer diagnosis in young women on their relationship with their mothers. Our draft questionnaire was developed by a panel of interdisciplinary experts and young breast cancer survivors to ensure clarity and content, but it was not statistically validated. Our questionnaires were not completely anonymous, (so that they could be linked to our PYNK database), which may have resulted in less open and honest responses. Our mixed methodology design did not provide as detailed an assessment as a purely qualitative design might have, such as conducting indepth interviews with young women and/or their mothers. Although we approached all potentially eligible young women and had a high response rate of 82%, participants may have more likely than non-participants to have had a good relationship with their mothers, and to turn to their mothers for support. In order to maintain brevity of the questionnaire and to maximize response to all items, the psychological state of participants at the time of the study, or as recalled to be at the time of diagnosis, was not assessed. It is conceivable that this could have affected the daughters’ views of their mothers’ supports and the nature of their relationship with their mothers. In addition, we did not
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take into account the views of the mothers. In depth interviews of both mothers and daughters simultaneously in a future study would be an interesting addition to this field and might have future implications for practice. Furthermore, our study represents the experience of a multi-ethnic group of women at a single tertiary center in a large city, and the experience of women with different demographics and at smaller centers may be different. One third of the daughters were non-native English speakers which may have affected their ability to answer some of the personal questions. Despite these limitations, our study serves as a first step in exploring a complex and important subject that merits further attention. In conclusion, our study shows the critical role of the practical and emotional supports provided by mothers to their young daughters with breast cancer, which frequently result in a favorable impact on the motheredaughter relationship. The nature of the pre-diagnosis relationship did not seem to affect the mothere daughter relationship after a breast cancer diagnosis. The degree of support from a mother was not affected by her daughter’s breast cancer stage or need for chemotherapy, but the nature of that support was influenced by the daughter’s marital status and parity. Young women with breast cancer should be encouraged to turn to their mothers and not mask their feelings, as mothers are an important source of support. However, despite the emotional and physical toll on these mothers there are limited supports available to them. Accordingly, future studies should address the effects of a breast cancer diagnosis in a young daughter from the mother’s perspective, and the benefit of formal, culturally sensitive supports for these mothers. Ethical standards This study was conducted in accordance with the recommendation of Sunnybrook Health Sciences Centre’s Research Ethics Board. Role of the funding source There are no sources of funding to declare. Conflict of interest statement We have no conflict of interest to declare. Acknowledgments We would like to thank Christel Helwig, Nim Li, Rodica Mandel and Kimberly Hill for their help in data acquisition. References [1] Andres CK, Johnson R, Litton J, Phillips M, Bleyer A. Breast cancer before age 40 Years. Semin Oncol 2009;36(3):237e49. [2] Gelmon K, Partridge AH, Morrow M, Davidson NE. Breast cancer in young women: epidemiology, treatment, and survivorship issues. In: 2005 Educational Book. American Society of Clinical Oncology; 2005. p. 61e7. [3] Avis NE, Crawford S, Manuel J. Quality of life among younger women with breast cancer. J Clin Oncol 2005;23(15):3322e30. [4] Avis NE, Crawford S, Manuel J. Psychosocial problems among younger women with breast cancer. Psychooncology 2004;13(5):295e308. [5] Warner E. Impact of MRI surveillance and breast cancer detection in young women with BRCA mutations. Ann Oncol 2011 Jan;22(Suppl. 1):i44e9.
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