Coping with breast cancer together: Challenging topics for mothers and their adolescent-young adult (AYA) daughters

Abstract

Background.

The mother-daughter relationship can be central to women who are coping with breast cancer and provide a key source of support. However, the adolescent and young adult (AYA) daughters of diagnosed mothers have been known to exhibit notable distress during this time, withdrawing and avoiding communication, further challenging their ability to cope together.

Objective.

We sought to identify challenging topics that contribute to this avoidant mother–daughter communication pattern, as a first step in helping mothers and AYA daughters facilitate health-promoting communication.

Methods.

We examined thematically analyzed transcripts of one-on-one, in-depth, semi-structured interviews with 27 women (12 mother–daughter dyads).

Results.

We to identified 3 broad topics that were challenging to discuss: daughters’ future breast cancer risk; emotionally related concerns; and clinical and physical aspects of disease. Thematic properties illustrate the challenging nature of each topic that informed their ability to communally cope together.

Implications.

Findings provide an initial roadmap for developing communication skills interventions that help mothers and AYA daughters navigate challenging conversations and facilitate communal coping.

Introduction

The Family Systems Genetic Illness Model purports that how patients and family members cope with cancer is interrelated, central to well-being, and influenced by developmental factors.¹ Supportive resources offer a “psychosocial map” that can help families navigate cancer together. Such resources promote better health outcomes for patients and loved ones.² Clinicians and researchers have increasingly argued for building psychosocial resources that are relationally and developmentally tailored.³ Women diagnosed with breast cancer describe their mother–daughter relationship as central to coping ^4–6 and a source of support.^7–9 Their coping experiences vary given where they are in the life-span.^4,8 Daughters (of diagnosed mothers) in adolescence, emerging adulthood, and young adulthood (AYA) are especially distressed ^5,10 and mirror mothers’ distress.^11,12 Diagnosed mothers with AYA daughters struggle with wanting to cope together while wanting to shield daughters.^10,13 How they communicate affects their adjustment. Resources targeting this bond are rare and must address AYA daughters’ unique needs.

Breast cancer: A shared mother–daughter experience

Mothers and daughters “share” breast cancer psychologically, physiologically, and relationally.¹⁴ How a mother copes has implications for the daughter. When mothers experience posttraumatic stress symptoms, elevated stress hormones, and/or decreased immunological functioning, daughters can as well.^11,15 Both mothers and daughters also describe “psychological chronic risk”: they worry about daughters’ risk and fear mothers’ recurrence.¹⁶ Additionally, they can encounter a relational shift as daughters adopt a more supportive role.^4,7–9 Still, as daughters want to “be there” for their mothers,⁷ they struggle to meet their mothers’ needs while managing their own.10 This is informed by their developmental phase in the life-span.^7,8 AYA daughters tend to be more withdrawn and especially distressed.^5,17 Moreover, AYA daughters report more distress with caregiving in comparison to older daughters.^18,19 How they communicate plays a role in mothers’ and daughters’ health outcomes. Diagnosed mothers with more open mother–daughter bonds report better relational and physical health.¹³ How mothers and AYA daughters talk about risk also matters. Negative maternal communication (like denial) during risk discussions is linked with daughters’ increased cortisol.²⁰ These discussions also impact daughters’ future health. When mothers give daughters screening advice, they tend to follow it.21 Given AYA daughters’ distress and links between health outcomes and mother–daughter communication, resources are needed to help them communicate more effectively.¹⁰

Communicating with AYA daughters during breast cancer

Recent research comparing mother–daughter breast cancer communication in young, middle, and later adulthood identified variant communication patterns related to age.^7,8,13 Only diagnosed mothers and their AYA daughters described daughters avoiding and withdrawing from cancer discussions.^7,8 Mothers expressed heightened concern about AYA daughters’ well-being and, at times, viewed their avoidance as specific to the adolescence/early adulthood.^7,8,13 Yet, mothers also admitted feeling unsupported or disappointed.^7,8 Daughters retrospectively expressed guilt about avoidant behavior but admitted fearing their mother’s mortality and extreme distress.^7,8 They described avoidance as the only way to cope.^7,8 By exploring what contributes to this pattern, we can help mothers and AYA daughters facilitate health-promoting communication. As a first step, we posited: What topics are most challenging for diagnosed mothers and AYA daughters to discuss?

Methods

Recruitment

Enrollment criteria included the following: (1) mothers diagnosed within 5 years; (2) AYA daughters (aged 15–29) at diagnosis and at least 18 when interviewed; and (3) English-speaking. Upon institutional review board approval (1003004907), recruitment strategies included advertisements at a private medical institution, use of the SONA system of undergraduate students (an online scheduling software widely used in research study recruitment), and daughters/mothers being encouraged to recruit their mother/daughter. Compensation included $25. Daughters recruited via the SONA system could also receive research participation credit for the course in which they were enrolled.

Procedures and analysis

To better ensure and facilitate mothers’ and daughters’ comfort with disclosure, women participated in separate or individual semi-structured, in-depth, audio-recorded interviews via phone or in a private room at the clinical site or university. Most interviews were conducted by the lead author with a subset conducted by another author (NP). Interviews lasted on average 45 minutes. Transcriptions resulted in over 1,000 single-spaced pages of data. Participants were asked about mother–daughter communication from diagnosis to the present day and what topics contributed to daughters’ avoidance. Using the constant comparative method,^22,23 the lead author (an expert in qualitative methodology) and another author (NP, who was trained by the lead author) analyzed the data concurrently with data collection. Analysis was managed using ATLAS.ti.23 Data were separated into 2 groups (mothers or daughters) and analyses for each group were conducted separately to identify themes. The analytical process included assigning codes to concepts, collapsing concepts into categories/themes, and identifying thematic properties for rich description.²⁴ Analyses were compared to discuss divergence and make decisions about collapsing or excluding coded data. Codebooks were constantly updated until data collection/analysis ended and developed for both groups. To ensure rigor, 2 additional authors (AK and MC, trained by the lead author) re-analyzed the data with codebooks to finalize a typology.²⁵ Thematic findings from each group were then triangulated to identify similarities and differences in mothers’ and daughters’ perspectives. Meetings were held across analysis with the lead author to collapse analyses and further refine the codebooks for presentation of findings. To maintain confidentiality, names were replaced with a number to represent the relationship and either a “d” or “m” to indicate relational role within that relationship.

Results

Sample characteristics

Twelve dyads (N = 27) participated. One dyad had 2 daughters. One daughter and one mother participated independently as their mother/daughter did not respond to multiple recruitment efforts. Three did not provide demographics. Mothers (n = 14) were aged 40 to 61 years (M= 51.15, SD = 6.06). Daughters (n= 13) were 18 to 25 years (M= 22.5, SD = 3.18). Diagnosis stage ranged from 1 to 3. Treatment ranged from lumpectomy only to mastectomy, radiation, and chemotherapy. Most were Caucasian (82%) and lived in the Southwest, with half having a college degree.

Findings overview

Collectively, mothers and daughters described avoidance when talking about breast cancer. Both perceived 3 broader topics as especially challenging. Themes are summarized with thematic properties to illustrate how their perspectives both overlapped and were distinct.

Daughters’ future breast cancer risk

Talking about future risk included lifestyle habits and screening behavior. Mothers initiated these conversations, noting that they were worried about daughters’ risk. Women highlighted 3 factors informing the challenging nature of this topic.

Human development.

The daughter’s age/maturity informed mothers’ and daughters’ avoidance. At times, they avoided the topic because they didn’t perceive immediate risk for daughters. This daughter expressed: “We don’t talk about it now simply because I think we both think that I’m too young to get it, so it’s not really an issue” (2bb). Mothers echoed this sentiment and also did not want to add an “extra burden of worry” (13a) prematurely. When mothers discussed risk, daughters exhibited discomfort, which mothers associated with immaturity. One mother shared, “I tried to talk to her quite a bit more about doing self breast exams. And just tried to be really open about it. She was really embarrassed” (4a). Daughters also referenced age to explain why they did not want to discuss risk. For instance, this mother’s daughter stated, “I really don’t want to think about that right now. … I’d say, ‘Oh mom, that’s so far away! I’m still a teenager!’ I don’t want to think about how it would be with my kids or whatever” (4b).

Personality.

Only mothers attributed daughters’ personalities to their resistance of risk discussion. One mother recalled her daughter saying “quit telling me” [about screening behavior]. The mother explained, “She’s ‘Miss Avoidance’ … That’s how she deals with everything.” (3a). Mothers also indicated that some daughters were uncomfortable discussing their bodies: “[She] wants nothing to do with [breast exams]. When I start talking about something, she’s like, ‘Are you kidding me? That’s gross.’ … She’s just really prudish about that kind of thing” (4a). Mothers with multiple daughters balanced different personalities and reactions, as this mother shared: “They both need to get [genetic testing]. Now, [Daughter 1]’s bugging me to do it and [Daughter 2] isn’t, which doesn’t surprise me. [Daughter 1] wants to know and [Daughter 2]’s like ‘Ew!’ It’s exactly their personalities” (6a).

Fear of risk.

Only daughters described fear informing avoidance. Some were not ready to “go there.” This daughter disclosed, “After seeing my mom go through it, it’s like, I want to push it away” (10 b). This daughter explained how her family cancer history made her reluctant to address risk:

My main concern is just for me. Am I going to get cancer? [Mom] had it and her mom died from it and her grandma died from it so it’s definitely in our family genes. That’s the only thing that I’ve never really talked to her about. … Maybe just not ready to really accept the fact that maybe one day I could get cancer (14b).

Some daughters also perceived that their mothers were avoidant as a function of fear, as this daughter shared: “[It’s] another one of those things she shies away from. … It’s probably scary for her to think about that about her daughter having to deal with all the same stuff that she did” (6bb)

Emotionally related concerns

Both mothers and daughters avoided emotional concerns and were aware of each other’s avoidance. They identified 3 concerns that informed the challenging nature of this broader topic.

End of life or mortality.

End-of-life concerns (e.g., advance care planning, death) were especially distressing. Both mothers and daughters avoided such discussions. Although rare, when the topic was broached, both exhibited distress. This daughter disclosed her mother’s reaction after sharing her fears: “My mom tries to come across so strong, but she was hurting really deeply. … When I thought I was going to lose my mom, that killed her” (10b). This mother shared:

I think she’s just not comfortable talking about death in general, especially when I was sick or if she thinks I’m too often [she’ll say] “Okay, I know you need to talk about this. I’m dealing with it, Mom. But I’ve had enough.” Kind of an attitude (3a).

Daughters typically described avoiding the topic due to distress or not knowing how to support their mother:

It was actually easier to hear about [side effects] than about the fears that she was having.

“I’m afraid I won’t be around to see my grandkids grow up,” and things like that. It was easier to hear about the nausea and the physical stuff that I could give her recommendations about or kind of help her deal with (2b).

Daughters also avoided the topic, believing that it would contradict the mother’s positive coping: “She had never initiated anything like that and she had only had positive thoughts that she was showing me so I didn’t want to bring up anything negative like that” (9b).

Recurrence and future uncertainty.

Both mothers and daughters were concerned and about the future, particularly recurrence, but avoided discussing it. This mother explained:

I don’t talk to her about that. … I haven’t reached that point yet. But the fear of going to that stupid appointment and then waiting for that man to say “Yes” or “No.” … Literally, that one word changes your life. I haven’t talked to her about that because I don’t think she’s even—my kids haven’t thought about that yet (8a).

Likewise, this daughter shared: “I haven’t found anything that makes it easier to talk about possibilities of recurrence. … That’s one of those things that nobody wants to think about” (11 b)

When mothers entered survivorship, recurrence was a concern but still avoided. Daughters felt they shouldn’t initiate the discussion:

If she’s in that state of mind where she wants to discuss that, then I’ll be more than happy to talk to her about it … because I feel comfortable that she knows reality. … But if she doesn’t bring it up, I wasn’t going to say anything. (3b)

At times, mothers perceived that if they didn’t disclose recurrence concerns, it buffered daughters from issues they were unaware of: “I think [my kids] thought that once you have the surgery and the chemo, then that’s it. … You’re just done, which is okay. Let them think that. They don’t need to take on that never-ending worry” (6a). Some mothers also withheld upcoming appointments. This mother explained:

I wouldn’t tell her, “Oh, I had a checkup, it was fine or great” or anything, because the way I kind of left it is “I’m done with this.” I feel like if I bring up this stuff, it will raise questions about “I thought you were done with it.” Well, the reality is I’m going to live with this the rest of my life (9a).

Daughters described concerns about recurrence and knew their mother worried too but also knew they weren’t sharing this:

She’s cancer free from what we know, but we get results tomorrow. The last few weeks, she’s been a little worrisome and she doesn’t talk to me because I live at home right now. She doesn’t talk to me about it. She talks to her friends about it, and I catch all the conversations because I live there (10b).

Negative affect.

Both mothers and daughters struggled with negative affect (e.g., sadness, anger, fear), were aware of each other’s distress, and withheld disclosing for various reasons. This daughter shared:

[I was] not as open as I probably needed to be. I was so upset, so I started going to a counselor about it. But my mom thinks I sought it out because of my boyfriend [and] I got laid off, but all that goes together with her cancer. That just completely in my life threw me for a loop because I thought I was going to lose my mother and I didn’t know how to handle it. It was the hardest thing I think I’ve ever done (10b).

At times daughters withheld emotions, believing it “helps for her to see me stronger” (6bb). Daughters perceived that hiding emotions prioritized mothers’ needs: “I kept [my feelings] away in a little box and I really just tried to take care of my mom—put my mom first before everything” (7b). Some mothers interpreted that when daughters didn’t express negative affect, this indicated strength or support:

I would tell her that: “Oh, I had a meltdown because I can’t get in a hot spring.” And I don’t recall that she put me off or changed the subject. She would go “Oh, that’s too bad.” [I] don’t know whether it was uncomfortable for her or not. … She does have a bit of an anxiety problem. I was imagining that in her own little way, without wanting me to know about it, that she was kind of flipping out, but she was able to be with me and not show that (5a).

Mothers also described withholding emotions as symbolizing strength. They linked this to “positive” coping, which they hoped daughters would model:

It’s like a child smelling fear. … You cannot, cannot, cannot, cannot, dwell on that and let that show because you’ve got to instill that positiveness and that power in your child so that they have the energy and the strength to fight it (11b).

At times, mothers withheld emotions given daughters’ needs or reactions, as this mother shared: “I know she cries later. I worry about that. That’s what I worry about. … When it’s happening, she’s all business and she’s really good. … So, when I can, I don’t let her know” (8a).

Mothers also hid emotions to prioritize their role as mother:

I’m always a mom. No matter what’s going on with me, I’m the mom. Now I’m sick and I’m tired and I don’t want my kids to see that. Even though it’s a fact and it’s what’s going on, I don’t want them to see that. I want to still be strong. I want to still be a protector and I want to still be mom (4a).

Daughters at times were aware that their mother was prioritizing her maternal role by not disclosing but also were aware of their mother’s distress:

She didn’t like the way she looked. … I think maybe she wanted to keep it a secret from me because going through the whole high school everyone hates the way they look and stuff, she had always been the one to tell me, “You’re beautiful. You’re beautiful.” … I think she didn’t want me included in it because she didn’t want me to see her feeling so negatively about the way she looked (9b).

Clinical and physical aspects of disease

Although both mothers and daughters described various physical or clinical aspects of breast cancer as challenging to discuss, only daughters were described as avoidant, resistant, or distressed when discussing these issues. They highlighted three issues that capture the challenging nature of this broader topic.

Going to the hospital/clinical appointments.

Mothers tried to include daughters in clinical settings, but daughters struggled with going to clinical appointments, chemotherapy treatments, or the hospital. Mothers relate daughters’ discomfort or resistance to distress, personality, or maturity. As this mother shared:

I had asked if she would [take me to chemo]. … She couldn’t do that. … Taking me to the doctor that was outside of her comfort zone. … Had she been older I probably would have been frustrated about her not being willing. … Given that she had just learned to drive and that she has anxiety with doctors I knew it wasn’t [a] personal thing that she wasn’t trying to help me. It was just not within her ability (4a).

Some daughters associated their avoidance with not liking medical environments saying, “I can’t handle going into the hospital,” “[I’m] really bad with blood and needles and hospitals,” or “Doctors freaked me out.” Daughters also described avoidance in conjunction with struggling seeing mothers as vulnerable: “When she’s been in the hospital lately … that’s hard for me … I want to go because she’s there but it’s definitely really hard for me to see her looking so sick” (8b).

Mothers’ physical changes.

Daughters exhibited discomfort with mothers’ physical changes from surgery or pain. Although mothers didn’t mention it, daughters also struggled with mothers’ hair loss:

When she talks about her hair and how she looks and stuff, it really upsets me because I know she’s really upset about it. … I just feel bad that she’s had to lose all her hair from this. … Anything looks-wise upsets me because I know it really upsets her. (8b)

Mothers and daughters both described daughters’ avoidance regarding mastectomies:

She seemed uncomfortable with looking at my breast … I was able to take the big bandage off and then it was just the little steri-strips. I was standing there getting undressed and I could see that it looked like she was trying to find a way not to be there. I [said], “I need you to be here.” Of course, I’m looking at my breast in the mirror and everything. I wanted her not to be afraid of it and not go, “Oh, I wonder what it looks like.” It’s beautiful (5a).

Daughters struggled with wanting to be there to support their mother but becoming distressed when observing physical changes:

When she took off her bandages, she showed me what they did to her. Oh my god. It looked like somebody had beaten her up. I gulped. I sucked it in. I [said], “Oh, it’s not so bad.” I had a nightmare that night. I couldn’t sleep (10b).

At times, daughters struggled to even hear about it:

Sometimes I [said], “That’s a little too much information.” But sometimes I wanted to help her out if she was feeling sick or actually in pain. And she’d joke about it … When she was talking about how she had to cut off her breast, she’s like “Good thing you still have yours.” I’m like, “Okay, Mom. You don’t really need to say that” (4bb)

This daughter’s sister also explained how it was difficult hearing about their mother’s pain: “She talk[ed] about how the surgery … affected her. … saying she was a little tender. I’m like, ‘Be quiet please!’ … The physical stuff really made me uncomfortable” (4b). Daughters also indicated that they believed their mothers avoided speaking of their pain to buffer them:

She’ll be in a lot of pain this week and next week from her chemo, but she will act like she’s got like a sore or something. … She doesn’t want you to worry about her. She definitely downplays that a lot (8b).

Discussion

Addressing challenging topics is a first step in helping mothers and AYA daughters communicate more effectively. Even though findings show that some topics are challenging for both, the dyadic approach revealed that they sometimes have variant perspectives, with mothers (or AYA daughters) identifying challenges (or factors informing these challenges) that the other had not. Their collective voice paints a more comprehensive picture of coping dynamics. Findings further provide mothers (and interventionists) an inside lens as to why AYA daughters may be avoidant and more distressed.

For instance, while both are cognizant of daughters’ difficulty with being present in clinical settings (largely linked to daughters’ personality traits or dislike of medical situations), only daughters acknowledged discomfort with talking about or observing mothers’ physical state, associating distress with witnessing their mother’s vulnerability due to pain, disfigurement, or hair loss. Mothers wanted to share the physical trauma and may be less aware that daughters struggle with this. Additionally, both expressed challenges talking about daughters’ disease risk, with both sometimes suggesting that the conversation was not yet necessary given daughters’ age. However, unlike daughters, mothers described challenges navigating this topic given daughters’ personality (i.e., typically avoidant, likely to procrastinate, “prudish” about the female body). Unlike mothers, daughters associated their avoidance with fearing risk. Although both believed the conversation may not be necessary this early in life, daughters still struggled with fears about risk, indicating they need to process this in a health-promoting manner. Moreover, talking about risk early in the life-span is important to ensure that daughters engage in risk-reduction behavior, as daughters tend to follow their mother’s advice in adulthood^.21

Mothers and daughters also identified similar challenges talking about emotional concerns. An underlying relational tension further complicated their willingness to communicate: they wanted to support one another cope together—but also wanted to protect one another (and themselves). This motivation of protection in disclosure decisions is a tension felt across age groups of mother–daughter bonds.^7,13 It is noteworthy that AYA daughters seemed aware that their mother hid some concerns (e.g., negative affect) but also perceived that if their mother had not broached a topic (e.g., recurrence), daughters should not do so because it would cause mothers distress.

Daughters deferred to mothers to take the lead on these conversations, believing that this prioritized their mother’s well-being. Similarly, mothers prioritized their role as mother (and, thus, their daughter’s well-being) to explain why they did not initiate discussions. Other studies have revealed how prioritization of others’ needs in family life is often gendered (female) and role-based (mothering), but such behavior may also impede women’s ability to attain needed support and restrict family members’ ability to cope together.^26,27 Considerations like the daughter’s maturity and personality are factors to weigh when deciding whether to engage in emotionally charged conversations. At the same time, given AYA daughters’ own fears (which fuel distress) and awareness of their mother’s concerns (and silence), having such conversation might send the message to both that it is okay (and helpful) to talk about. Simultaneously, this may give daughters an opportunity to decide whether they are ready to talk about certain topics. Doing so may also afford mothers an opportunity to obtain support and for daughters to provide it, thereby facilitating communal coping.

Limitations

This study is largely based on the experiences of Caucasian women. Mother–daughter communication is influenced by culture.²⁸ Future studies are needed to culturally tailor resources. Daughters were mostly late adolescents or emerging adults. Older young-adult daughters (up to age 39) likely have distinct experiences, given the role of maturity, and variants in AYA needs should be further isolated in future research. Implications Findings provide an initial roadmap for developing communication skills interventions that help mothers and AYA daughters navigate challenging conversations and facilitate communal coping. The dyadic perspective elevates our understanding of factors to consider when navigating these topics, including daughters’ maturity and personality. Given this, as some mothers with multiple daughters indicated, what works for one daughter may not work for another. Results draw attention to topics women may be grappling with at home and where clinicians could offer support.

Conclusion

Identifying challenging topics for mothers and AYA daughters helps us understand the avoidant/withdrawal coping pattern common in AYA daughters.⁷ While mothers may take daughters’ lead and navigate topics in line with their responses, daughters too are taking mothers’ leads by not broaching topics if their mother has not. Mothers may feel that they are protecting their daughters (and vice versa). Not broaching topics may send the message of not being willing to communicate. This may inevitably do more harm than good, and opening the door to discussing these topics could actually lessen distress for AYA daughters.²⁹