Dr. Carla Fisher: Helping Mothers, Daughters and Families Communicate About Cancer
CJC Advertising Associate Professor Carla Fisher, a member of the UF Health Cancer Center and faculty affiliate in the Center for Arts in Medicine, was interviewed on Feb. 26, 2021 about her research on helping families and clinicians more effectively communicate about cancer.
Below the video is an edited transcript of that interview.
Much of your research is focused on family dialogue about cancer, in particular communication between mothers and daughters about breast cancer. What prompted you to focus on this area of research?
Fisher: I got interested in family communication as an area of research when I was a master’s student at Arizona State University studying communication advocacy. I took this Ph.D.-level course in family communication and it was all about these understudied relationships, intergenerational dynamics, challenges, tensions. And I thought, “Wow, I see my family.”
All of the challenges and tensions and really rich narratives that are very core to the way in which I’ve learned about generations of my family, it was just layered in research. And I thought, wow, this is an amazing opportunity to blend the art of how you know your family and culture and story with science. And to really understand that the way in which families communicate does have implications for their health.
So that led me into focusing my Ph.D. in that area. When I started doing research with different scholars at Penn State during my doctoral studies, we would do a lot of family research. Nothing breast-cancer specific, or mother-daughter specific. But breast cancer and mother-daughter would come up over and over again, just in talking about people’s health crises or transitions. And what struck me was that that was a story that was within my family.
My mother is the youngest of eight, and her oldest sister Rose was diagnosed with breast cancer in her thirties and, at the time, had four daughters who ranged in age from 2 to 15. My mom was about 17 years younger than that sister and who was like a second mother to my mom. She would always tell me the stories about my Aunt Rose, who had breast cancer and died within two years.
My mom felt that her own mother was never the same after that. All the sisters, it was a huge impact on their life. I remember my mom always talking about what Rose was most concerned about was her daughters – both then and for their future. And this was during a time in our history in which people did not talk about cancer. And you certainly didn’t talk about it outside of the family. And today, her daughters (my cousins) are all grandmothers. They still honor Rose with breast cancer awareness walks – all three generations of girls. My cousins’ daughters all have the middle name of Rose. It’s clearly affected our family for generations. It really jarred me that there was this story that others had and that was also my family’s story. And yet it seemed to be a lot of other people’s stories as well. And the idea of trying to help families talk about those difficult things and how central that is to coping just really struck me.
So it became more of a family story, but something that I felt it was important to help mothers and daughters navigate the disease together. But also get clinicians to realize, hey, this isn’t a woman’s disease, it’s a family disease, and it’s really a mother-daughter disease. And so off I went to kind of explore breast cancer and mother-daughter communication.
What are some of the biggest obstacles to productive healthcare discussions among family members?
Fisher: When you think about healthcare, you think of a more biomedical model, right? The way in which we come at care is very much from a patient perspective or an individual perspective. And so we aren’t really cultured even within our clinical experiences to be talking about these things or navigating these things as a family. Just opening the lines of communication can be difficult.
A lot of what I do is looking at how families are adjusting to an acute or chronic disease diagnosis, or even chronic risks. One of the things is keeping the channels of communication open to be talking about those things, but also to recognize that certain topics are more challenging than others.
And then there’s relational tensions. We have, within families, multiple generations. That means that we have different developmental goals depending on where we are in the lifespan. But it also means that we are socialized differently. And so part of it is recognizing that what works for my mom might not work for me, and vice versa, or my grandparents. And figuring out how to help families navigate that from a space of being respectful of each person’s different needs, whether it be about communication in certain issues, but also how they approach them.
One of the biggest things with families where you see those challenges is openness. Older generations were not socialized to be as open as younger generations are today. And younger generations are socialized to pretty much have it all out there. So there’s no boundaries and those are difficult conclusions that we have to face, but also navigate together.
Your Family Health Lifespan Communication Lab is designed to help facilitate healthy communication practice at home and in the clinical setting. What kind of research is being conducted through your lab?
Fisher: The research in my lab is really all about contributing to what’s been called a “psychosocial map” for families who enter the world of health and illness without any help. Rather, healthcare is typically more from a biomedical model. Maybe two decades ago, researchers started calling for resources, interventions, that would help families learn how to cope with disease or disease risks together. And that’s really what I focus on. I prioritize helping families learn how to engage in healthy communication practice or help learn healthy communication skills. And part of that is understanding what they do adaptively or what is helpful to their disease coping and adjustment. And the other aspect of that is what they’re doing that might not be health promoting. Much of my research in this area has been on understanding how families cope with cancer.
We dedicate time to doing formative or foundational research so that we can build interventions that are contextually specific in terms of family relationships, disease type, and stressors. One of the exciting things that I’m a part of right now is working with the Leukemia and Lymphoma Society on a study led by my colleague, Dr. Carma Bylund. We have conducted interview and survey research to better understand the needs of adult children who are caregivers of parents who was diagnosed with a blood cancer. What are the challenging topics? What are their communication skills needs both in the clinic as well as at home within their family relationships? We then use that research to build an intervention that attends to their needs.
The online intervention that we are developing right now is geared toward helping these adult child caregivers of diagnosed parents develop communication skills, including enhancing their family communication. We help them learn how to be more open and supportive and address challenging topics within the family. We also address how to manage online information and to build communication skills central to advocating for parents with providers. We can also draw authentic, lived narratives from our formative research to use as behavioral modeling tools in the intervention.
This is an evidence-based approach in which we use narratives to help intervention participants relate to and see themselves in caregivers’ stories, which helps build the self efficacy they need to enact those skills in their own lives.
We are also working on building these interventions in other health contexts, such as with young-adult caregiving daughters of women who are diagnosed with breast cancer. Right now we’re doing some survey research that builds off of the research that I have built over the last decade on mother-daughter communication and breast cancer coping and caregiving that will inform the development of an intervention targeting mothers and daughters.
Why did you choose UF to pursue this research?
Fisher: What really drew me to UF was the fact that I could be on a medical campus and literally walk 15 minutes to go talk to the clinicians that I’m collaborating with. Every institution I’d been at before had some connection with a medical institution, but I was spending a lot of time in my car traveling to see families and patients at different facilities. And it’s just incredible to be able to literally walk outside your door and be connected with caregivers, patients, families, clinicians.
And with the UF Health Cancer Center, where I am a part of their population science core, you have a huge community of scientists across different colleges, working together to have this central goal, which is to develop interventions or resources that are directly implemented into the clinic in some way. You know that the work that you’re doing is informed by a community need and the people that are going to be served by it, but also that it won’t sit in a journal somewhere. It will actually be in a clinical setting, doing the good that you hope that it can do.
What has your research shown to be effective practices in communication between mothers and daughters about breast cancer?
Fisher: Mothers and daughters and breast cancer. It’s a really rich relationship. Some people call it tangled vines. Other people call it blood ties. They have the potential to be very emotionally close over the lifespan, arguably one of the closest relationships, but also one of the most tense. And so navigating how to communicate about breast cancer and other health-related issues is really challenging.
My work really focuses on what that looks like at different phases of the lifespan. And it differs depending on when a woman is diagnosed and if she’s the mother or the daughter. What works for a diagnosed midlife daughter and her aging mother is a little bit different than what works for a diagnosed mom with an adolescent daughter or between a mom and her young-adult daughter who has been diagnosed with breast cancer.
But the young adult daughters are the ones that I’ve been focusing on a little bit more because one of the things that I’ve found in my research is that moms who are diagnosed very much want to talk to their younger daughters about it. But it’s those adolescent emerging adults — adolescent up through their mid-twenties — where those daughters can be much more resistant to having those conversations. And part of that is, it’s their own way of coping. It’s very scary to think about losing your mother or even see her in such a vulnerable state.
And so we’ve really been spending some time looking at what are some communication strategies to navigating those conversations and how to buffer or reduce that withdrawal pattern that we see with daughters.
And some of it for daughters, on one hand, is reframing the way you’re thinking about those conversations. Daughters tell us that, “Once I started realizing that not knowing things was much scarier, a bigger, more ambiguous thing than knowing things, having my uncertainty managed by talking to my mom about it, I was doing a lot better.” The other side of that is, “I liked supporting my mom. I like being able to be there for her. I felt it made me feel good.”
But you have to be careful how you tread those waters. They need to be having the conversations early on and be involved, but it’s balanced in terms of the daughter’s personality, her preferences for talking about things that can be more difficult. And part of it is letting moms know that they need to start the conversation. They’re the ones that have to initiate it and continue it. To do it in brief doses and not to have those conversations be too serious. And it can be helpful to do that in a more indirect way, not necessarily making it about your situation, but situations in general.
You have been exploring ways to work with mommy bloggers on social media to disseminate information. How do you ensure that information disseminated is accurate and truthful?
Fisher: I found it very interesting in working with mommy bloggers how much they wanted the opportunity to be able to disseminate scientific information and to collaborate with experts in health and illness to do social good. They see themselves as a community voice and they take that role very seriously and responsibly.
So in our social media intervention with mommy bloggers, we made sure that the evidence-informed message couldn’t be altered in any way. That’s important because you want it to be scientifically sound and not changed so that there’s no misinformation out there. But you also want it to be community led. The mommy bloggers know how to tailor the larger message in ways that speak to their audience better than I could. So we took a scientific or evidence-based approach blended with a community or user-generated approach.
We were able to preserve that scientific information with an un-editable infographic, and then the mommy bloggers we worked with could integrate it into their blog post, which they personalize in a way that their readers relate to. And I think that’s what works well — you make sure that the evidence is not altered in any way, so that myths or misinformation don’t happen. You do have great potential in using social media to disseminate risk information, but you also have to be protective of the way in which that information can be shared.
What have been some of the results of your research on more effectively engaging women from diverse cultures?
I think one of the most interesting things is talking to mothers about how we can we craft better messages that are targeting various cultures, and also targeting mothers in terms of developing healthy habits to reduce disease risks, particularly in breast cancer. Across cultures, one of the messages that we got is it has to be a multi-generational message. By and large, if you’re asking families to adopt healthy lifestyle habits, you have to get everybody involved. You have to get grandma and grandpa on board who maybe were microwaving plastics, for example, and have done it a certain way all their lives.
And so I think one of the biggest messages that just spoke across cultures is that if I can get my mom, my grandma and grandpa on board, and see that this is for the better health of your grandchildren, as a family, as a unit, it’s much easier to adopt those healthy lifestyle habits.
Hispanic women and Black women also talked about the importance of the visuals, seeing themselves represented in materials that were targeting them. But they also wanted to see women of diverse ethnicities and races to send the message that this isn’t a Black woman’s issue or White woman’s issue. Breast cancer is EVERY woman’s issue – it cuts across race and ethnicity. And so really speaking to the importance of multicultural visuals too.
Another aspect is recognizing power dynamics in families. When you try to give information to older generations, you can be threatening the relational health if they view it as disrespectful. For instance, Hispanic mothers talked to us about how the older generations of women in their family – their mother, aunts, grandmother – would perceive that upward direction of advice from say granddaughter to grandmother or niece to aunt– as potentially disrespectful toward, an older generation. So, we have to think about these messages in terms of preserving relational health too. And so I think keeping family dynamics and challenges at the forefront is important in terms of navigating how you share that information and how you take on wanting to adopt healthier behaviors as a family.
What are you seeing as some of the communication issues in a clinical setting, particularly around breast cancer?
Fisher: The one area that I’ve especially focused on in terms of patient and provider and family communication is working with families who have a higher risk of hereditary breast or ovarian cancer, or HBOC. Those families are really dealing with what’s been called psychological chronic uncertainty, where they feel it’s not if I get it, but when I get it. And that’s particularly true with families who have tested positive for a genetic mutation, where they have a higher risk, like BRCA 1 or 2.
And so in those settings, it’s really about helping clinicians help patients and also patients’ family members manage that uncertainty. Because it’s not something they deal with at one point in time, such as deciding to get genetic testing, or getting the genetic test result. It’s something they deal with over the lifespan. And it’s something that can be very psycho-socially distressing.
Some of the things that we found in our research are that women are more inclined to get genetic counseling is if they have daughters. They’ll spend a lot of time talking about daughter-related uncertainty and daughters’ reactions to their own uncertainty. So part of that is really helping clinicians realize that the way in which they help their patients manage that uncertainty in the clinical setting will mirror what patients then do when they go home and help their daughter or other loved ones manage that uncertainty.
Much of that is really focused on what are ways in which we can strategically help them manage that uncertainty, and how that plays a role depending on where they are on the lifespan, because that impacts their medical decision-making.