Study reveals concerns that are ‘top of mind’ among caregivers of patients with cancer
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As they work to anticipate and meet the needs of their loved ones, caregivers of individuals with cancer often struggle with their own complex emotional, physical and social concerns.
Many studies have been conducted on the needs of caregivers and patients, but often this research is done further along in the cancer care continuum. A study published in JCO Oncology Practice used a cognitive anthropology approach called Freelisting to elicit the priorities of these two groups during active treatment.
“The focus of this paper, because it was a secondary data analysis, was to really look at caregivers’ concerns, since we had previously published on the topic of patient concerns,” Kristin Levoy, PhD, MSN, RN, research scientist at Indiana University Center for Aging Research at Regenstrief Institute and assistant professor at Indiana University School of Nursing, said in an interview with Healio. “The patients’ concerns in this paper were a point of comparison and contrast. We wanted to know what is top of mind for caregivers, so we can better address the needs of both caregivers and patients.”
Levoy spoke with Healio the study’s findings and potential implications for the future of cancer care.
Healio: What is Freelisting and how did you use it in your study?
Levoy: The main idea behind Freelisting is that without necessarily being conscious of it, people already have internalized their priorities in a specific situation. If we ask them to create a list, the most important concerns at the time will trickle to the top and the things that are lower priority will be at the bottom. It’s a very time-limited, low-resource approach. Rather than prime them in any way, we ask them an open-ended question: “Tell us all the things that come to mind when you think about your cancer treatment/caregiver experience.”
We haven’t typically used this type of methodology to understand these concerns in an oncology setting, and it gave us a different approach to addressing them. To an extent, our underlying passion going into this secondary analysis was in recognizing the essential role of caregivers as oncology increasingly moves into the outpatient setting. An oncologist may have a 10- or 15-minute encounter with the client before they go for their treatment. Then the caregivers and patients are left to navigate a lot of things outside the health care setting.
Healio: What concerns emerged?
Levoy: Concerns about support and time surfaced in the Freelisting exercise. When we did the qualitative portion of the study, the caregivers seemed to want to talk about what those categories meant to them. So, we were able to drill down a little bit deeper into what that meant.
The caregivers were quite frustrated with how much time their role as a caregiver consumed. They also felt that they were going in blind in terms of helping the patient navigate their symptoms. They reported that they often used trial-and-error, “shoot-from-the-hip” strategies in helping the patient. I think they were just hoping for a bit more help from the health team.
Not all these caregivers were spouses; a decent number were adult children. They had jobs and children and busy lives of their own. So, there were a lot of concerns around scheduling and the amount of time they would need to take off work and deal with the logistics of getting the patient to their appointments.
As you can imagine, cancer care is increasingly fragmented. You may have your main oncologist, your radiation oncologist and your primary care physician that you’re seeing for broader comorbidity issues. So, it wasn’t just the cancer care itself and getting them to treatment appointments, but also the larger aspects of care they were having to juggle.
Caregivers discussed how they felt their life just stopped and everything got crossed off the calendar. They were extremely frustrated by showing up to appointments where they were supposed to hear results, and results weren’t available. They saw ways cancer centers could think about streamlining appointments, to make it a more “one-stop shop” when it came to accessing care. So, I believe some of these issues that came out in the interviews are things cancer centers can think about from a health care systems design perspective.
Healio: What other areas for cancer centers to consider did the study reveal?
Levoy: A large portion of caregivers also mentioned in their qualitative interviews that they had sought out mental health counseling while in the caregiver role. Although mental health supports were available at the cancer center, caregivers weren’t necessarily able to access these resources, depending on their schedules or the distance they lived from the hospital. So, we’re thinking about how cancer centers might be able to partner with more community-based resources to deliver that care.
I don’t think clinical encounters factor into the need to provide support to caregivers. However, we might be able to use telemedicine and some of these other strategies to address these broader concerns outside the clinical encounter. Some of my work is headed in that direction, and the pandemic also really underscored how valuable telehealth can be in bridging those gaps. We’re recognizing that oncology care in the home is here to stay, and it’s shone a light on the ways that cancer centers could be a bit more adept in designing their care to serve the patients and caregivers in a more targeted fashion.
Healio: What do you have planned next in this area?
Levoy: Some of my work is in how to improve communication in the clinical encounter and unpack how we, as an oncology team, can better improve our communication and facilitate some of the more targeted care delivery in the home. There is some formative work to be done in leveraging these findings. We want to assess these conversations and uncover how we can tailor our clinical interactions in a way that better serves the patient and the caregiver.
For more information:
Kristin Levoy, PhD, MSN, RN, can be reached at Department of Community and Health Systems, Indiana University School of Nursing, 600 Barnhill Drive #423, Indianapolis, IN 46202; email: klevoy@iu.edu.
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