Abstract
Purpose:
Data are lacking about experiences of partners of young women with breast cancer who co-parent dependent children.
Methods:
We conducted a cross-sectional analysis of partners of women with breast cancer diagnosed at age ≤40. Among those partners reporting at least one dependent child under 18 years old at the time of diagnosis, we used multiple linear regression to examine associations between partner quality of life (QOL) and sociodemographic and psychosocial factors, and the patient’s cancer stage and time since diagnosis.
Results:
Of the 219 parenting partners, all identified as male with a median age of 44 years; 96% (204/213) reported working full-time at the time of the survey. Fifty-four percent endorsed behaviors indicating maladaptive coping. In adjusted analyses, less than full-time employment (β= −8.76; 95% CI= −17.37, −0.14); younger age (β= −0.35; 95% CI= −0.069, −0.02), greater parenting concerns (β= 0.56; 95% CI= 0.36, 0.75), clinically relevant anxiety symptoms (β= 13.79; 95% CI= 10.24, 17.35), lower post-traumatic growth score (β= −0.33; 95% CI= −0.51, −0.16), lower social support (β= −0.21; 95% CI= −0.29, −0.12), lower sexual satisfaction (β= −0.40; 95% CI= −0.62, −0.19) and breast cancer stages 3 (β= 7.61; 95% CI= 0.19, 15.02) and 4 (β= 12.63; 95% CI= 1.91, 23.34), when compared to stage 0, were associated with lower partner QOL.
Conclusion:
Parenting partners of young women with breast cancer have substantial unmet psychosocial needs. Interventions are needed to enhance QOL and promote adaptive coping for this population.
Keywords: breast cancer, partners, parenting, young women, survivorship, caregiving
Introduction
Breast cancer is the most commonly diagnosed non-skin cancer and the second leading cause of cancer death among women in the United States [1, 2]. While less than 10% of all breast cancers are diagnosed in women younger than age 45, incidence in this age group has increased over the past 30 years [2, 3]. Moreover, younger women with cancer are more likely to have school-aged and other children at home [4]. Approximately one-third of patients with breast cancer have dependent children [5, 6], resulting in the need to balance parenting and coping with illness and treatment [7–9].
Families with children may be particularly vulnerable to emotional and practical stressors while managing the complexities of a cancer diagnosis and treatment [8, 9]. In two-parent families, the co-parent or parenting partner of someone with cancer faces an increased risk of developing significant stress as parents strive to meet the competing needs of children and the affected spouse or partner [7, 10, 11]. Parenting partners may assume new or expanded roles in the family and may find themselves shouldering additional responsibilities as the co-parent of minor children and potentially taking on new caregiver roles for the affected partner as well.
Prior work has underscored the central role of family members, particularly spouses or partners, who provide emotional and practical support for cancer patients [12], yet there has been little attention given to the unique experiences of partners who are caregivers to younger breast cancer patients while also parenting children. We sought to examine psychosocial factors associated with quality of life (QOL) in partners of young women with breast cancer in their dual role of co-parenting and providing care for the patient.
Materials and Methods
Study design and population
We conducted a cross-sectional analysis of 219 parenting partners of young women with breast cancer. Parenting partners were identified among partners of women enrolled in the Helping Ourselves, Helping Others: The Young Women’s Breast Cancer Study (YWS), a multi-site prospective cohort study of young women with breast cancer established to explore their biological, medical, psychosocial, and QOL issues (NCT01468246). Aligned with our previous work [13], partner was defined as the women’s spouse or self-defined significant other. Relationship status was determined based on whether women reported being married or in a partnered relationship on their most recently completed YWS survey. To recruit potential partners for our study, a letter was first mailed to 718 partnered women, explaining the purpose of the study and requesting permission to contact their partner and for their partner’s contact information. An invitation, including the elements of informed consent (a waiver of documentation of consent was approved), was sent to 494 partners between February 2016 and December 2016. After partners provided informed consent, study staff emailed participants an online survey via RedCap, a secure database platform. A paper version was also available for those who did not have access to, or preferred not to use, the online method. Participants were asked to complete the survey without discussion with the patient. Partners were eligible if they were at least 18 years old and had the ability to read and respond in English. Those identified as having at least one child under 18 years of age at the time of diagnosis were included in analysis. The institutional review boards (IRB) of the Dana-Farber Harvard Cancer Center, Simmons University, and other participating sites approved the study as an amendment to the YWS protocol after conducting scientific and human subjects review.
Study measures
Demographic and clinical characteristics.
Partners were surveyed on a range of sociodemographic characteristics (e.g., gender, age, race, marital status, employment status, and education level), while information about patient age, time since diagnosis and cancer stage were extracted by medical record review. Time since diagnosis was recorded as the number of months between the first pathology report indicating cancer and the return date of the partner’s survey.
Quality of life (QOL).
Partners’ perceived QOL was measured using the Caregiver QOL Index – Cancer (CQOLC), a self-administered rating scale to assess cancer caregiver’s mental and emotional burden, life disruption, positive adaptation and financial concerns [14]. This measure includes thirty-five items rated on a 5-point Likert scale (0= not at all to 4= very much) summed to generate a total score (reverse scoring for 8 positively-worded items) [14], with higher scores indicating lower caregiver QOL (CQOL) in this study.
Social support.
Perceived social support was assessed using the 19-item Medical Outcomes Survey (MOS) – Social Support Survey [15]. Items are summed, with higher scores indicating higher levels of perceived social support [13].
Coping.
Partners were asked to identify their coping behaviors and thoughts in response to cancer diagnosis using the Brief COPE, which is comprised of 14 subscales of two items each; items tend to be either generally adaptive or maladaptive with a Cronbach’s alpha of 0.57–0.90 [16]. The Adaptive Coping subscales comprise active coping, planning, positive reframing, acceptance, humor, religion, using emotional support, and using instrumental support (16 items); Maladaptive Coping subscales include self-distraction, denial, venting, substance use, behavioral disengagement, and self-blame (12 items) [16]. Responses are rated on a 4-point Likert scale (ranging from 0= I didn’t do this at all to 3= I did this a lot).
Financial security.
Perceived financial security was measured through a single item: How would you describe your household’s financial situation right now? The categories included 1) enough money for special things, 2) little spare money for special things, 3) money to pay bills only because cut back, and 4) difficulty paying bills [17, 18]. Responses were dichotomized for analysis into financial security (1) or insecurity (2–4).
Parenting concerns.
Parenting concerns among the partners at the time of the affected partner’s cancer diagnosis were assessed retrospectively with a partner-adapted version of the Parenting Concerns Questionnaire (PCQ), which measures distress specifically associated with parenting in adult cancer patients not fully identified by standardized tools for general distress, anxiety, or depression [8]. Internal consistency for the PCQ was 0.83, and moderate correlations were found with the constructs of interest [8]. Responses were averaged, with higher scores indicating greater parenting concerns. Survey adaptation was done in collaboration with the instrument developers: two subscales were retained (emotional and practical), while three items from the third subscale were excluded as not relevant to parenting partners. The practical subscale of the PCQ included questions such as concerns about impact on children’s daily routines or on time patients spent with children; the emotional subscale included concerns such as children’s worry about the patient dying and children’s distress related to parents talking about the illness.
Relationship strain.
Relationship strain in the past month among partners was measured by two items extracted from the marital subscale of the Cancer Rehabilitation Evaluation System (CARES) [19, 20]: “My partner and I have difficulty talking about our feelings”, and “My partner and I are not getting along as well as we usually do.” Responses for each item were dichotomized into not strained (0–1) or strained (2–4). A participant rating “strained” for either item was categorized as “strained”; if rated “not strained” for both items, the item was categorized as “not strained.”
Sexual activity and overall sexual satisfaction.
Sexual activity and overall sexual satisfaction among partners was measured by the Global Measure of Sexual Satisfaction (GMSEX) [21]. The GMSEX is comprised of five 7-point dimensions: good-bad, pleasant-unpleasant, positive-negative, satisfying-unsatisfying, valuable-worthless. Ratings were summed, with higher scores indicating greater sexual satisfaction [21].
Mood.
Partner anxiety and depression were assessed by the 14-item Hospital Anxiety and Depression Scale (HADS), a symptom-screening questionnaire to assess mood in the past week [22]. The best trade-off between sensitivity and specificity has been found to be achieved using a subscale cut-off point of 8 or above for identifying cases; reliability across the subscales has been found to range from α=0.67–0.93 [23].
Posttraumatic growth.
Posttraumatic growth among partners was measured by the 10-item Posttraumatic Growth Inventory – Short Form (PTGI-SF). This instrument assessed the degree to which partners, as a result of the crisis of cancer in their life, reported possible areas of growth and change (e.g., I changed my priorities about what is important in life) [24]. Shorter in length than the original PTGI, the PTGI-F contains two items from each of the five subscales of the original PTGI. Higher scores indicated that partners experienced posttraumatic growth.
Statistical Analysis
We computed descriptive statistics to characterize the variables using measures of central tendency. To examine factors associated with lower CQOL in parenting partners, we used linear regression with the following independent variables: sociodemographic factors (patient age at diagnosis, current partner age, race and ethnicity, marital status, education, employment, relationship duration, number of children, age of youngest child at time of diagnosis), cancer-related factors (time from diagnosis, stage), and psychosocial factors (coping style, parenting concerns, financial security, anxiety, depression, post-traumatic growth, social support, sexual activity, sexual satisfaction). Factors significant at a level of p<0.20 in univariable linear regression were then evaluated using stepwise multivariable linear regression models [25]. Analyses were conducted using SAS Software, Version 9.4 (SAS Institute, Cary, NC).
Results
Of the 494 partners who were invited to participate, 332 responded, for a response rate of 67%. Eighteen of these surveys were only partially complete, resulting in 314 with sufficient data for analysis. Of the 314 surveys completed, 219 (69.7%) included partners who reported parenting at least one minor child at the time of diagnosis.
Participant characteristics
Demographic characteristics of parenting partners are shown in Table 1. All parenting partners in this analysis were male. The median age of parenting partners at the time of survey completion was 44 years (range, 32–65). The median time from diagnosis to survey completion by parenting partner was 60 months (range, 9–114 months). The majority of partners were white (94%), employed full-time (96%) and college educated (77%). Most (94%) had been in their partnered relationship for at least 10 years. Family size at diagnosis included 22% with one child, 54% with two, 19% with three, and 5% with four or greater. The median age of patients at diagnosis was 37 years (range, 26–40). Stage of breast cancer at diagnosis was as follows: stage 0 (n=17, 7.9%), stage 1 (n=74, 34.3%), stage 2 (n=90, 41.7%), stage 3 (n=27, 12.5%), and stage 4 (n=8, 3.7%).
Table 1.
Parenting partner characteristics (N=219)
| Median (range) | |
|---|---|
| Partner age at survey (years) (n=213) | 44 (32–65) |
| Time from patient diagnosis to survey completion (months) (n=219) | 60 (9–114) |
| Age of children at diagnosis (years) (n=213) * | 6.9 (<1–26) |
| Number of children at diagnosis (n=219) | 2 (1–6) |
| N% | |
| Gender (male) | 219 (100) |
| White non-Hispanic (n=213) | 200 (94) |
| Working full time (n=213) | 204 (96) |
| College educated (N=211) | 162 (77) |
| Length of partnership ≥ 10 years (n=218) | 204 (94) |
6 partners did not provide birthdates for children.
Psychosocial concerns of parenting partners
Table 2 depicts the prevalence of parenting partners’ psychosocial concerns. Forty-four percent and 19% of the parenting partners reported anxiety and depressive symptoms, respectively. Thirty percent of participants reported financial strain and 35% reported relationship strain. The CQOLC mean score was 42.4 (range, 11–116; SD, 17.5), with higher scores indicating lower QOL. Fifty-four percent endorsed behaviors indicating a maladaptive coping style in response to cancer diagnosis. All partners, including those reporting they were not sexually active (21%), were asked to complete the GMSEX sexual satisfaction scale, and scores ranged from 5 to a high of 35 (indicating more satisfaction), with a mean score of 25.1 (SD, 8.3). The PTGI-SF mean score was 21.5 (range, 3–48; SD, 10.2), with higher scores indicating greater levels of positive change following diagnosis. The scores of the practical (mean, 11.2; range, 5–25; SD, 4.2) and emotional (mean, 10.9; range, 5–22; SD, 4.4) subscales on the PCQ were in the mild to moderate range. The social support scale mean score was 65.9 (range, 19–95; SD, 19.7) indicating a generally moderate level of support from others after diagnosis.
Table 2.
Parenting partners psychosocial concerns (N= 219)
| N (%) | |
|---|---|
| Anxiety (HADS subscore ≥8) (n=201) | 89 (44) |
| Depression (HADS subscore ≥8) (n=203) | 38 (19) |
| Parenting concerns (n=213) | 97 (46) |
| Relationship strain (n=214) | 74 (35) |
| Financial insecurity (n=213) | 63 (30) |
| Not sexually active (n=214) | 45 (21) |
| Maladaptive coping style (n=207) | 112 (54) |
| Mean (Range, SD) | |
| Parenting concerns (n=213) | 28.2 (12–53, 9.0) |
| Post-traumatic growth (n=203) | 21.5 (3–48, 10.2) |
| Caregiver quality of life (n=190) | 42.4 (11–116, 17.5) |
| Sexual satisfaction (n=219) | 25.1 (5–35, 8.3) |
| Social support (n=208) | 65.9 (19–95, 19.7) |
HADS, Hospital Anxiety and Depression Scale; SD, standard deviation
Factors associated with parenting partners QOL
Table 3 presents the results from the univariable and multivariable linear regression analyses. In the univariable analysis, younger age, higher parenting concerns, maladaptive coping style, financial strain, higher depressive symptoms, higher anxiety symptoms, lower post-traumatic growth score, lower MOS social support score, not being sexually active, and lower sexual satisfaction score were all significantly associated with lower parenting partner QOL. Partner race and ethnicity, employment, patient age at diagnosis, time since diagnosis, breast cancer stage, partner education, partner marital status, number of children, age of youngest child, and relationship duration were not significantly associated with QOL in the univariable analysis.
Table 3.
Associations with partner quality of life (N=219)
| Variable | Univariablea Estimate (95% CI) |
Standard Error | p-value | Multivariable Estimate (95% CI) |
Standard Error | p-value |
|---|---|---|---|---|---|---|
| Time from breast cancer diagnosis to partner survey (months) | −0.08 (−0.17, 0.01) |
0.05 | 0.096 | |||
| Financial security (ref = financial strain) | −6.84 (−12.31, −1.38) |
2.77 | 0.014 | |||
| Full-time employment (ref = <full-time employ) | −10.35 (−23.61, 2.92) |
6.72 | 0.126 | −8.76 (−17.37, −0.14) |
4.36 | 0.046 |
| Partner age (years) | −0.59 (−1.09, −0.08) |
0.25 | 0.023 | −0.35 (−0.69, −0.02) |
0.17 | 0.040 |
| Maladaptive coping (ref = adaptive coping) | 9.43 (4.55, 14.32) |
2.48 | <0.001 | |||
| Parenting concerns summary score | 0.87 (0.64, 1.09) |
0.11 | <0.001 | 0.56 (0.36, 0.75) |
0.10 | <0.001 |
| Age youngest child (years) | −0.61 (−1.44, 0.22) |
0.42 | 0.148 | |||
| HADS depression ≥8 (ref = depression <8) | 16.28 (10.22, 22.34) |
3.07 | <0.001 | |||
| HADS anxiety ≥8 (ref = anxiety <8) | 15.83 (11.26, 20.40) |
2.32 | <0.001 | 13.79 (10.24, 17.35) |
1.80 | <0.001 |
| PTGI summary score | −0.38 (−0.63, −0.13) |
0.13 | 0.003 | −0.33 (−0.51, −0.16) |
0.09 | <0.001 |
| MOS-SS summary score | −0.36 (−0.47, −0.25) |
0.06 | <0.001 | −0.21 (−0.29, −0.12) |
0.04 | <0.001 |
| GMSEX summary score | −0.68 (−0.96, −0.39) |
0.15 | <0.001 | −0.40 (−0.62, −0.19) |
0.11 | <0.001 |
| Sexually active (ref = not active) | −13.23 (−19.02, −7.44) |
2.94 | <0.001 | |||
| Breast cancer stage 1 (ref = Stage 0) | 1.73 (−8.39, 11.85) |
5.13 | 0.736 | 1.60 (−4.87, 8.07) |
3.27 | 0.626 |
| Breast cancer stage 2 (ref = Stage 0) | 0.08 (−9.85, 10.02) |
5.03 | 0.987 | 2.87 (−3.53, 9.28) |
3.24 | 0.377 |
| Breast cancer stage 3 (ref = Stage 0) | 7.68 (−3.68, 19.03) |
5.76 | 0.184 | 7.61 (0.19, 15.02) |
3.75 | 0.044 |
| Breast cancer stage 4 (ref = Stage 0) | 11.59 (−3.60, 26.78) |
7.70 | 0.134 | 12.63 (1.91, 23.34) |
5.43 | 0.021 |
CI, confidence interval; GMSEX, the Global Measure of Sexual Satisfaction; HADS, Hospital Anxiety and Depression Scale; MOS-SS, Medical Outcomes Survey-Social Support Survey; PTGI, Posttraumatic Growth Inventory
Factors significant at a level of p<0.20 in univariable linear regression were then evaluated using stepwise multivariable linear regression models.
The multivariable linear regression models included variables significant at p<0.20 in the univariable models. Younger parenting partner age (β = −0.35; p= 0.040; 95% CI= −0.69, −0.02), less than full time employment (β = −8.76; p=0.046; 95% CI= −17.37, −0.14), higher parenting concerns score (β = 0.56; p<0.001; 95% CI= 0.36, 0.75), HADS anxiety subscale score ≥8 (β = 13.79; p <0.001; 95% CI= 10.24, 17.35), lower post-traumatic growth score (β = −0.33; p < 0.001; 95% CI= −0.51, −0.16), lower MOS social support score (β = −0.21; p <0.001; 95% CI= −0.29, −0.12), and lower GMSEX sexual satisfaction (β = −0.40; p <0.001; 95% CI= −0.62, −0.19) were all statistically significantly associated with lower partner QOL. Additionally, compared to stage 0, stage 3 (β = 7.61; p=0.044; 95% CI= 0.19, 15.02) and stage 4 (β = 12.63; p=0.021; 95% CI= 1.91, 23.34) breast cancer were associated with lower partner QOL. Time from diagnosis, financial strain, age of youngest child, depression symptoms, maladaptive coping, and being sexually active were not associated with partner QOL.
Discussion
This is the first study, to our knowledge, that specifically focused on the parenting partners of young women with breast cancer. Our findings indicate that the majority of parenting partners in our study had concerns about the impact of cancer on their children, and reported greater parenting concerns that were associated with lower partner QOL. These findings were consistent with other young breast cancer survivors’ reports of parenting challenges and children’s adjustment as prominent and priority concerns [26, 27]. While children can be a source of joy and support, adding both comfort and meaning over the course of cancer care, the responsibility for their diverse needs in the context of a co-parent coping with cancer may heighten distress and affect QOL in this population of caregivers [8, 28, 29].
In our study, clinically relevant anxiety symptoms were associated with lower QOL in parenting partners. Similarly, in a longitudinal study of cancer patients, partners, and children by Gotze et al. [11], partners identified high levels of anxiety that impacted QOL. Huizinga et al. [30] noted that in the context of cancer, the healthy parent can serve a significantly protective function for the wellbeing of children. A healthy parent, however, who is overwhelmed or struggling to cope, may not have the capacity to provide the level of emotional support that their children or the patient need [31]. Research has also indicated that higher levels of anxiety among both ill and well parents were associated with greater symptoms of stress among adolescents [32]. Other research highlights the impact of the family environment when a parent has cancer, identifying a significant association between better family functioning (including that of the well partner) and greater adjustment in children [33].
Depression and maladaptive coping were statistically significant in univariable analysis, but did not contribute to the multivariable analysis, potentially due to collinearity. Our study identified, however, a substantial proportion of parenting partners who reported maladaptive coping behaviors in response to cancer-related stressors. These types of strategies may be less effective in managing the demands of illness on both partners and their families, and potentially heighten stress, suggesting an important focal point for intervention development. Prior work has shown that among parenting ill and well partners, fathers perceived greater impairment in roles and communication [9]. These findings also revealed a significant association of parental depression with impairment in family functioning [9]. Parental factors such as depression may also have a negative impact on children’s psychosocial adjustment and wellbeing in the setting of cancer [33].
While these issues may be relevant for any partner dealing with cancer, it is important to note the potential impact of gender on behavior given this study’s all-male partners sample. Addressing male gender socialization and potentially gender-sensitive issues was not a focus of this study, but the role of partner gender in adjustment to illness while parenting minor children may be a valuable consideration in future research.
Our study findings regarding the association between lower perceived social support and lower QOL are consistent with prior research [11]. Social support in the context of cancer has well-documented benefits and the potential to be protective for mental health, including opportunities to express thoughts, feelings, and needs as well as receive practical assistance and emotional support [34, 35]. Additionally, our study found that less than full-time employment at the time of the survey was associated with lower QOL. Although it is unknown whether partners’ reduced work hours were in response to cancer-related demands or other factors, it is important to note that full-time employment may be a struggle while also supporting a spouse with cancer and children [36]. Fewer hours of employment could mean reduced income and potentially less access to work-related resources, including social support [37, 38].
Given the importance of sexual activity in most partnered relationships [39], it is not surprising to find that lower sexual satisfaction score (among all parenting partners) was significantly associated with lower QOL. Young women often experience difficulties in sexual functioning due to breast cancer care and treatment [28]. More specifically, young mothers with breast cancer have reported greater interference with sexual intimacy [40], and more problems in their relationship with their partner than those without children [41]. Although it is not possible to disentangle the impacts of various factors in the present analysis, partners’ lower sexual satisfaction may create more emotional distress, and negatively affect wellbeing and response to illness and parenting.
The construct of post-traumatic growth was supported by a body of research investigating an individual’s potential to develop a new beneficial level of psychological functioning and perspective in response to adversity [24]. In our study, findings demonstrated that lower post-traumatic growth scores were strongly associated with lower QOL. Posttraumatic growth may be particularly relevant in the parenting context if the experience of growth contributes positively to well partner adjustment and functioning (e.g., greater confidence in one’s ability to handle difficulties, greater sense of closeness to others). Given the potentially protective role of the healthy parent [30, 42], such growth may serve to buffer stress and affect the family emotional environment, including the wellbeing of children [33].
Implications
This research advances our understanding of the experience of younger caregiving partners who are co-parenting in the setting of breast cancer and underscores the need to support these partners as they care for the patient and and their children. Clinicians need to extend their awareness to the impact of illness on parenting partners, including parenting concerns, level of distress, and coping behaviors, and consider how well partners may benefit from supportive care interventions throughout the illness trajectory. Greater attention to routine screening for psychological distress and perceived poor QOL would help identify parenting partners at risk for unmet needs. Of note, in our study, time since diagnosis was not associated with QOL; this result, coupled with other characteristics associated with worse QOL in partners, suggests that the stressors of cancer and treatment may have longer-term effects on partners. Importantly, when partners have opportunity to address their sources of stress, they may provide support more effectively for their loved one with cancer and their children. Furthermore, given the highlighted interdependence of partners and patients in prior studies [43, 44], supportive couples-based interventions may help facilitate communication between patients and their partners, address psychosocial concerns, and enhance co-parenting. Family-focused interventions can offer guidance on relevant parenting concerns such as approaches for talking with children about cancer, understanding developmentally appropriate feelings and behavior of children, dealing with role changes, and asking others for support when needed.
Limitations
Our study has several important limitations. First, the sample was comprised of highly educated participants and lacked racial diversity, which may limit the generalizability of our findings to parenting partners from other racial and ethnic backgrounds and those who report lower educational attainment. In addition, more research including sexual and gender minorities (e.g., transgender and lesbian couples) is needed and may reveal different outcomes and concerns. Second, given the cross-sectional nature of this study, we are unable to determine the directionality, temporality, and sensitivity to change of cancer- and parenting-related factors, psychological distress, and QOL over time. Third, the length of time from diagnosis to survey completion varied among participants, and the extent to which this varying time period may affect aspects of partners’ reporting is not known. Fourth, we did not capture other factors that may potentially impact parenting partners’ QOL, such as partners’ mental health history, role and functioning within the family. Finally, the current analysis did not link the partner factors with the patients’ functional and emotional status, thus it was not possible to determine what role these factors may have contributed to overall QOL of the parenting partners.
Conclusions
The diagnosis and treatment of cancer significantly impact patients and their families [45]. Our findings highlight the psychosocial needs of individuals managing their partner’s cancer while co-parenting. Interventions are needed to reduce caregiving burden and strain on the parenting partner, while also strengthening resources for coping for the entire family.
Figure 1.

Flowchart
Funding Statement:
Susan G. Komen (AHP); Breast Cancer Research Foundation (AHP); The Pink Agenda (AHP)
Footnotes
Conflict of interest/Competing interests: The authors declare no competing interests.
Code availability: The primary authors have full control of all codes and agree to allow the journal to review the codes if requested.
Ethics approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional review board committee (IRB) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study was approved by IRBs of Dana-Farber Harvard Cancer Center, Simmons University, and 12 other participating sites (Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, Cape Cod Hospital, Faulkner Hospital, Lowell General Hospital, Massachusetts General Hospital, Mayo Clinic, Newton-Wellesley Hospital, North Shore Cancer Center Salem, South Shore Hospital, Sunnybrook Health Sciences Centre, and University of Colorado Hospital).
Consent to participate: Informed consent was obtained from all individual participants included in the study.
Consent for publication: The authors affirm that human subject research participants provided informed consent for publication of their deidentified data.
Availability of data and material:
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
References
- 1.American Cancer Society (2020) How Common is Breast Cancer? https://www.cancer.org/cancer/breast-cancer/about/how-common-is-breast-cancer.html. Accessed 7 May 2020 [Google Scholar]
- 2.Trogdon J, Baggett C, Gogate A, et al. (2020) Medical costs associated with metastatic breast cancer in younger, midlife, and older women. Breast Cancer Res Treat 181:653–665 10.1007/s10549-020-05654-x [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Johnson R, Chien F, Bleyer A (2013) Incidence of breast cancer with distant involvement among women in the United States, 1976 to 2009. JAMA 309:800–805 [DOI] [PubMed] [Google Scholar]
- 4.Weaver K, Rowland J, Alfano C, McNeel T (2010) Parental cancer and the family: A population-based estimate of the number of US cancer survivors residing with their minor children. Cancer 116:4395–4401. 10.1002/cncr.25368 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Russell K, Rauch P (2012) Parenting with Cancer I: Developmental Perspective, Communication, and Coping. In: Quinn Q, Vadaparampil S (eds) Reproductive Health and Cancer in Adolescents and Young Adults. Springer, Dordrecht, pp 131–140 [DOI] [PubMed] [Google Scholar]
- 6.Bloom J, Kessler L (1994) Risk and timing of counseling and support interventions for younger women with breast cancer. J Natl Cancer Inst Monogr 199–206 [PubMed] [Google Scholar]
- 7.Moore C, Rauch P, Baer L, et al. (2015) Parenting changes in adults with cancer. Cancer 121:3551–3557. 10.1002/cncr.29525 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Muriel A, Moore C, Baer L, et al. (2012) Measuring psychosocial distress and parenting concerns among adults with cancer: The Parenting Concerns Questionnaire. Cancer 118:5671–5678. 10.1002/cncr.27572 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Schmitt F, Piha J, Helenius H, et al. (2008) Multinational study of cancer patients and their children: Factors associated with family functioning. J Clin Oncol 26:5877–5883. 10.1200/JCO.2007.12.8132 [DOI] [PubMed] [Google Scholar]
- 10.Aamotsmo T, Bugge K (2014) Balance artistry: The healthy parent’s role in the family when the other parent is in the palliative phase of cancer - Challenges and coping in parenting young children. Palliat Support Care 12:317–329. 10.1017/S1478951513000953 [DOI] [PubMed] [Google Scholar]
- 11.Götze H, Ernst J, Brähler E, et al. (2015) Predictors of quality of life of cancer patients, their children, and partners. Psychooncology 24:787–795. 10.1002/pon.3725 [DOI] [PubMed] [Google Scholar]
- 12.Kim Y, Given B (2008) Quality of life of family caregivers of cancer survivors: Across the trajectory of the illness. Cancer 112:2556–2568. 10.1002/cncr.23449 [DOI] [PubMed] [Google Scholar]
- 13.Borstelmann N, Rosenberg S, Gelber S, et al. (2020) Partners of young breast cancer survivors: a cross-sectional evaluation of psychosocial concerns, coping, and mental health. J Psychosoc Oncol 38:670–686. 10.1080/07347332.2020.1823546 [DOI] [PubMed] [Google Scholar]
- 14.Weitzner M, Jacobsen P, Wagner H, et al. (1999) The Caregiver Quality of Life Index-Cancer (CQOLC) scale: Development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res 8:55–63. 10.1023/A:1026407010614 [DOI] [PubMed] [Google Scholar]
- 15.Sherbourne C, Stewart A (1991) The MOS social support survey. Soc Sci Med 32:705–714. 10.1016/0277-9536(91)90150-B [DOI] [PubMed] [Google Scholar]
- 16.Carver CS (1997) You want to measure coping but your protocol’s too long: Consider the brief COPE. Int J Behav Med 4:92–100. 10.1207/s15327558ijbm0401_6 [DOI] [PubMed] [Google Scholar]
- 17.Gierisch J, Earp J, Brewer N, Rimer B (2010) Longitudinal predictors of nonadherence to maintenance of mammography. Cancer Epidemiol Biomarkers Prev 19:1103–1111. 10.1158/1055-9965.EPI-09-1120 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Williams R, Barefoot J, Califf R, et al. (1992) Prognostic importance of social and economic resources among medically treated patients with angiographically documented coronary artery disease. JAMA J Am Med Assoc 267:520–524. 10.1001/jama.1992.03480040068032 [DOI] [PubMed] [Google Scholar]
- 19.Ganz P, Schag C, Lee J, Sim M (1992) The CARES: A generic measure of health-related quality of life for patients with cancer. Qual Life Res 1:19–29. 10.1007/BF00435432 [DOI] [PubMed] [Google Scholar]
- 20.Schag C, Ganz P, Heinrich R (1991) CAncer Rehabilitation Evaluation System - Short Form (CARES-SF). A cancer specific rehabilitation and quality of life instrument. Cancer 68:1406–1413 [DOI] [PubMed] [Google Scholar]
- 21.Lawrance K, Byers E (1992) Development of the interpersonal exchange model of sexual satisfaction in long-term relationships. Can J Hum Sex 1:123–128 [Google Scholar]
- 22.Zigmond A, Snaith R (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370 [DOI] [PubMed] [Google Scholar]
- 23.Bjelland I, Dahl A, Haug T, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. J Psychosom Res 52:69–77. 10.1016/S0022-3999(01)00296-3 [DOI] [PubMed] [Google Scholar]
- 24.Cann A, Calhoun L, Tedeschi R, et al. (2010) A short form of the Posttraumatic growth inventory. Anxiety Stress Coping 23:127–137 [DOI] [PubMed] [Google Scholar]
- 25.Bursac Z, Gauss CH, Williams DK, Hosmer DW (2008) Purposeful selection of variables in logistic regression. Source Code Biol Med 3:1–8. 10.1186/1751-0473-3-17 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Connell S, Patterson C, Newman B (2006) Issues and concerns of young Australian women with breast cancer. Support Care Cancer 14:419–426. 10.1007/s00520-005-0003-8 [DOI] [PubMed] [Google Scholar]
- 27.Semple C, McCance T (2010) Parents’ experience of cancer who have young children: A literature review. Cancer Nurs 33:110–118. 10.1097/NCC.0b013e3181c024bb [DOI] [PubMed] [Google Scholar]
- 28.Baucom D, Porter L, Kirby J, et al. (2005) Psychosocial issues confronting young women with breast cancer. Breast Dis 23:103–113 [DOI] [PubMed] [Google Scholar]
- 29.Bloom J, Stewart S, Chang S, Banks P (2004) Then and now: Quality of life of young breast cancer survivors. Psychooncology 13:147–160. 10.1002/pon.794 [DOI] [PubMed] [Google Scholar]
- 30.Huizinga G, Visser A, Van Der Graaf W, et al. (2011) Family-oriented multilevel study on the psychological functioning of adolescent children having a mother with cancer. Psychooncology 20:730–737. 10.1002/pon.1779 [DOI] [PubMed] [Google Scholar]
- 31.Thastum M, Watson M, Kienbacher C, et al. (2009) Prevalence and predictors of emotional and behavioural functioning of children where a parent has cancer: A multinational study. Cancer 115:4030–4039. 10.1002/cncr.24449 [DOI] [PubMed] [Google Scholar]
- 32.Huizinga G, Visser A, van der Graaf W, et al. (2005) The quality of communication between parents and adolescent children in the case of parental cancer. Ann Oncol 16:1956–1961. 10.1093/annonc/mdi395 [DOI] [PubMed] [Google Scholar]
- 33.Krattenmacher T, Kühne F, Ernst J, et al. (2012) Parental cancer: Factors associated with children’s psychosocial adjustment - a systematic review. J Psychosom Res 72:344–356. 10.1016/j.jpsychores.2012.01.011 [DOI] [PubMed] [Google Scholar]
- 34.Hasson-Ohayon I, Goldzweig G, Braun M, Galinsky D (2010) Women with advanced breast cancer and their spouses: Diversity of support and psychological distress. Psychooncology 19:1195–1204. 10.1002/pon.1678 [DOI] [PubMed] [Google Scholar]
- 35.Helgeson V, Cohen S (1996) Social support and adjustment to cancer: Reconciling descriptive, correlational, and intervention research. Heal Psychol 15:135–148 [DOI] [PubMed] [Google Scholar]
- 36.Van Ryn M, Sanders S, Kahn K, et al. (2011) Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue? Psychooncology 20:44–52. 10.1002/pon.1703 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37.Sloan M, Evenson Newhouse R, Thompson A (2013) Counting on coworkers: Race, social support, and emotional experiences on the job. Soc Psychol Q 76:343–372. 10.1177/0190272513504937 [DOI] [Google Scholar]
- 38.Chancellor J, Layous K, Margolis S, Lyubomirsky S (2017) Clustering by well-being in workplace social networks: Homophily and social contagion. Emotion 17:1166–1180. 10.1037/emo0000311 [DOI] [PubMed] [Google Scholar]
- 39.Wimberly S, Carver C, Laurenceau J, et al. (2005) Perceived partner reactions to diagnosis and treatment of breast cancer: Impact on psychosocial and psychosexual adjustment. J Consult Clin Psychol 73:300–311. 10.1037/0022-006X.73.2.300 [DOI] [PubMed] [Google Scholar]
- 40.Arès I, Lebel S, Bielajew C (2014) The impact of motherhood on perceived stress, illness intrusiveness and fear of cancer recurrence in young breast cancer survivors over time. Psychol Heal 29:651–670. 10.1080/08870446.2014.881998 [DOI] [PubMed] [Google Scholar]
- 41.Avis N, Crawford S, Manuel J (2004) Psychosocial problems among younger women with breast cancer. Psychooncology 13:295–308. 10.1002/pon.744 [DOI] [PubMed] [Google Scholar]
- 42.Visser A, Huizinga G, van der Graaf W, et al. (2004) The impact of parental cancer on children and the family: A review of the literature. Cancer Treat Rev 30:683–694. 10.1016/j.ctrv.2004.06.001 [DOI] [PubMed] [Google Scholar]
- 43.Hagedoorn M, Buunk B, Kuijer R, et al. (2000) Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. Psychooncology 9:232–242. 10.1002/1099-1611(200005/06)9:3<232::AID-PON458>3.0.CO;2-J [DOI] [PubMed] [Google Scholar]
- 44.Jacobs J, Shaffer K, Nipp R, et al. (2017) Distress is Interdependent in Patients and Caregivers with Newly Diagnosed Incurable Cancers. Ann Behav Med 51:519–531. 10.1007/s12160-017-9875-3 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 45.Osborn T (2007) The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psychooncology 16:101–126. 10.1002/pon [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
