Surviving Breast Cancer Together: The Family Science Behind Chronic Illness

James M. Loy, Miami University's College of Education, Health, and Society

FSW student research projectsIn many ways, families are like an organic tapestry, an interconnected web of life, each thread related to the next in some manner. As one life touches another, many of these connections may be substantial, others may be somewhat insignificant, or even nearly invisible. But nonetheless, together they all form a larger system or unit, a whole that is comprised of many dynamic and individual parts. And when one thread is pulled or damaged or diseased, it will inevitably have an effect on the whole.

However, when considering the diversity and complexity of most family structures, comprehending the extent of these reverberant effects is not yet well understood. But after a member of her own family became afflicted with a disease, Lindsay Clark, a Miami University undergraduate, became interested in the research that was designed to explore such connections further.

Clark followed a friend’s recommendation to visit M. Elise Radina, Miami University College of Education, Health and Society (EHS) Professor and Chair of the Department of Family Science and Social Work, who currently oversees a comprehensive research effort to understand how the diagnosis, treatment and survivorship of breast cancer impacts family life.  

“The fact that the research was dealing with breast cancer survivors was a personal connection to me, since my grandma is a breast cancer survivor,” says Clark. “I contacted Dr. Radina the end of my freshman year and she interviewed me before the school year was over. I was accepted to work with the team and began the beginning of my sophomore year.”

The work centered around a concept Radina herself had developed, a model called the Theory of Health-Related Family Quality of Life (HR-FQoL), which seeks to understand how the survivorship of a long-term individual illness, such as breast cancer, affects the overall quality of family life as a unit.

Before her theory was first published in the Journal of Family Theory & Review in 2013, academic research, up to that point, had neglected this area of family science.

On one side, there was existing research that studied how health, long-term illnesses, and survivorship affected the quality of life for individuals. And on the other side, there was some research that looked at family quality of life as a very broad and general concept. But Radina recognized the need to close the gap between the two.

“I took ideas that were hiding in different theories, and brought them together to create a new theory,” Radina Says. “When it comes to family quality of life research, there is the family quality of life stuff, and then there is the individual health quality of life. So you either talk about how families are functioning well or not. Or, you talk about something related to [patients] that have cancer or diabetes or whatever, and their quality of life with that particular condition.”

Radina, therefore, combined theoretical and empirical aspects of both family stress and coping theory and family resiliency theory to create HR-FQoL, which looks at both health and family in a more intermixed and global way.

At its core, HR-FQoL acknowledges that during instances of long-term illnesses, the individual is not the only person who is affected. Because most individuals are part of a larger family structure, the interconnected nature of this system means that all family members will mutually influence each other in a variety of ways.

In her original article titled, “Toward a Theory of Health-Related Family Quality of Life,” Radina explains: “It is appropriate to apply the theory of HR-FQol in ways that go beyond the patient as the central unit of study to include multiple family members and multiple perspectives, to gain a clearer picture of family-level impacts of breast cancer diagnosis, treatment, and survivorship.”

In order to pull the lens back and gain a glimpse of this larger picture, HR-FQol utilizes three conceptual pillars including emotional closeness, family sense of coherence, and family functioning, which all zero in on different psychological and interpersonal aspects of the family dynamic. And though HR-FQol can just as easily be applied to diabetes, various cardiovascular diseases, and more, Radina focused on breast cancer while developing these initial concepts.Research charts

In this case, breast cancer was highlighted because, according to the American Cancer Society, it is not only one of the most common forms of cancer, it is also increasingly associated with survivorship. But even though the 5-year survival rate of stage II cancer is over 90%, it can still, Radina notes, “put the concept of family quality of life in sharp relief for both patients and family members who may take for granted the quality of their family life -- be it positive, negative, or neutral.”

As a theory, HR-FQol is expansive and comprehensive, and Radina is currently employing its framework to further understand how health-related family quality of life actually unfolds in real-world settings. And to this end, she is continuing an ongoing line of projects aimed at exploring each of HR-FQol’s three pillars in more depth and detail.

The particular project Lindsay Clark joined as an undergraduate researcher focused specifically on “emotional closeness,” and it was a natural continuation of the original work Radina had begun while collecting the qualitative breast cancer survivor data she used to first generate the theory.

“The theory was born, or it was gestating, as I was creating the interview guide to collect this data,” Radina explains. “So then I said, ‘Okay, we have the theory, and now we have this data. Let’s see if the theory bears itself out in the data.’”

The idea was to test, build upon, and further develop the emotional closeness aspect of theory, to make a substantial step toward the validation of HR-FQol as a whole. And along with Clark, the project also involved a number of additional Miami University undergraduate research assistants who, over the course of several semesters, helped Radina use quantitative data analysis to code and catalogue in-depth interviews with breast cancer survivors.

“This project is something that I have been doing with undergraduate students for a long time,” Radina says. “We used qualitative data analysis software, I trained the students how to use it and how to code, and to clean up the codes and the code book, and the whole deal.”

The team utilized HR-FQol as a framework to explore how the diagnosis, treatment, and recovery of breast cancer changes the perception of family quality of life, especially as it related to feelings of emotional satisfaction. Open-ended questions were used to encourage a discussion of survivors’ experiences with breast cancer, family life, the decision-making process, personal coping techniques, and more.

They were also asked very specific questions about their perceived quality of family life both before and after the diagnosis.

For Radina, it was important to address any potential changes in perception because she wanted to move beyond the casual claims of people who often say things like, for example, “The disease brought us closer together as a family.” Or, “We appreciate each other so much more now.” And so on. 

“You hear that anecdotally all the time from cancer survivors,” she says. “But I want to know if that is really a thing. Has it really changed? Or are we creating some sort of false something about whether or not it changed? So I am asking these pointed questions to have them really think about what it was like before and what it is like now.”

Within HR-FQol’s concept of emotional closeness, the team revealed a number of reoccurring subthemes which suggested that most cancer survivors do, in fact, perceive changes in the level of emotional satisfaction and psychological closeness they experienced before, and then after, a breast cancer diagnosis.

The full extent of these findings will soon be published in the undergraduate research journal Compass, and it’s a body of work that actually fulfills several key functions, both for Radina’s students and for the field of family science at large.

First, it is a step toward a fuller understanding and a more complete application of HR-FQol, which could soon be used to help healthcare professionals better assist families managing disease and illness.

“Ultimately what this will lead to is an instrument that will measure these concepts,” Radina explains. “This project helped us to get from the theory to understanding the concepts better so we can then create an instrument to use in a larger quantitative study to test the theory. It is a step in that process. Then we can tie it to other aspects of family dynamics and family interactions.”

Doctors, nurses, social workers, and mental health professionals, for example, could potentially use such an instrument to measure a family’s quality of life, and then increase positive outcomes by intervening with any preventative measures, educational materials, or coping strategies as needed.

Secondly, the project also served as a unique learning opportunity for the students themselves. One that, as undergraduates, would rarely be afforded at many other institutions until at least the graduate level.

Elise Radina and studentsBut at Miami, Radina’s students learned how to submit an Institutional Review Board (IRB) proposal, how to interview participants, and how to manage confidentiality. They learned critical listening skills and qualitative data analysis methodologies, as well as just how exhaustive the research submission and publication process often is.

“Being a part of this research team has been a very rewarding experience, says Clark. “I learned how long of a process research and publication can be. I got to see how collaboration and teamwork was a very important part of the whole process. It translated the experimental process I do in the lab to qualitative research involving people, and it has also given me the leadership skills that I will carry with me.”

Being a science major, Clark gained valuable insight into the publication process itself. But the leadership and interpersonal skills to which she speaks are also equally essential to many other students, especially those pursuing careers in family science and social work.

“Many of my students want to go into some sort of helping profession and, often times, a health related profession,” says Radina. “And they say, ‘What I have learned from listening to people’s stories has helped me to think about how I am going to be in that job.’ It is not just about the clinical things they learn. They understand that there is a backstory, and they learn how to talk to people about their backstory having done this.”

Mary Martin, a current Miami social work major, completely agrees.

“In our classes we talk about challenging experiences, and we talk about how to respond to those challenges,” Martin says. “But it was real life experience to be able to talk to people and to read the transcripts, to see how having a chronic condition does impact the family structure, from real people and not from quotes in a text book. You also get to apply what you learned in the classroom, and you gain an appreciation for the process of generating knowledge.”

And herein lies yet another key skill that Radina’s students glean.

Here, even at the undergraduate level, the goal is to encourage students to become producers of knowledge, to see themselves as creators, to better understand how we know what we know and just where all these ideas come from.

“Being a part of that knowledge creation process, and then seeing how people in family science and social work, and in the larger research community, come to understand that knowledge has been really valuable to me,” says Martin. “It has helped me to be critical, because when you know what that process looks like, it is easier to ask questions and to learn even more.”