Understanding the needs of cancer care partners

Through the Penn Undergraduate Research Mentoring Program, undergrads Abi Ocholi and Akin Adio deepened their understanding of qualitative research and of the experiences of caregivers.

a Zoom screen with five researchers smiling during a meeting
Students Akin Adio (top right) and Abi Ocholi (bottom left) worked closely with Jane Evered (top left) and Clare Whitney (bottom right), both of whom earned doctoral degrees working with Penn Nursing’s Sarah Hope Kagan (top center). (Image: Courtesy of Sarah Hope Kagan)

It’s difficult, perhaps impossible, to face cancer alone. People with cancer rely on others—spouses, siblings, children, parents, friends—to navigate appointments, medications, treatments, insurance, disappointments, indignities, and much more. These caregivers are a diverse mix. Their experiences and needs can be all over the map and are often ill-understood and overlooked by health care professionals.

This summer, Penn undergraduates Akin Adio and Abi Ocholi helped in launching a project to examine these critical care partners, working under the mentorship of Sarah Hope Kagan of the School of Nursing, along with Kagan’s former doctoral students Jane Evered, now at the University of Wisconsin, Madison, and Clare Whitney, of Stony Brook University. Their project, called Partners in Care, aims to conduct qualitative research to uncover a nuanced understanding of who care partners are and how they experience their roles, paying particular attention to how those experiences are shaped by individual identities such as gender, sexuality, race, ethnicity, disability, age, and financial status.

The study, supported by the Hillman Scholars Program in Nursing Innovation, relies on a partnership between Penn Nursing and Penn Medicine’s Abramson Cancer Center. Kagan, who enjoys including students in her research, felt that Adio and Ocholi were ideal team members to help carry it out.

“Abi and Akin just popped out during my interviews with them as, ‘Wow, you’d be such great partners in this,’” Kagan says. “And as they worked with us this summer, they have been full members of the team.”

Supported by the Center for Undergraduate Research and FellowshipsPenn Undergraduate Research Mentoring Program, each student received a $5,000 award for their summer research and will present their findings with a poster at the annual CURF Research Expo on Monday, September 19, from 5-6:30pm in Houston Hall.

Ocholi, a third-year nursing major from Houston, seized the opportunity to apply to the PURM program this year, after learning about it from a friend last year just past the application deadline.

Student Abi Ocholi
Abi Ocholi, a third-year student from Houston, Texas, wants to pursue nursing. (Image: Courtesy of Abi Ocholi)

“I went straight into the nursing opportunities and liked this one because it focused on the individual human experience,” she says. That resonated with Ocholi, who had been a close-up witness to her mother’s and aunt’s work in caring for her grandfather when he had cancer. “That really touched me,” she says.

Adio, too, had a personal experience that drew him to the research opportunity in Kagan’s group. His best friend in high school died of cancer.

“Through the process of his treatment and getting to talk to him every day about it, it’s something I became passionate about,” says Adio, a second-year neuroscience major in the College of Arts and Sciences from Mohnton, Pennsylvania.

Adio began the summer with research experience already under his belt, having worked in a cancer biology laboratory during his first year at Penn under the mentorship of Richard Phillips of the Perelman School of Medicine.

The Partners in Care project appealed because of its focus on “the broader clinical aspect, with interactions with people and patients,” says Adio, who is a pre-med student and plans to become a physician.

Both students began their summer experience by closely reviewing research articles that had used what’s known as a dimensional analysis, an approach that finds categories, themes, and other patterns in what research participants say in response to interview questions. It’s the method that will be used by the team to analyze the results of the Partners in Care study. Adio and Ocholi also assisted with recruitment, directing surveys to people with cancer to learn about their care partner networks, then reaching out to the care partners to see if they would be interested in participating in the study, a commitment of an hour or two for an in-depth, directed interview.

Ocholi notes that care partners must become experts in the medical care of a cancer patient on top of the other psychological burdens they often shoulder. “I don’t think people realize how much cancer care partners take on,” she says. “You’re already emotional about the patient, but you can’t really show that because you’re needed to stay strong to be able to support them.”

Student Akin Adio
Akin Adio, a second-year student from Mohnton, Pennsylvania, hopes to become a doctor. (Image: Courtesy of Akin Adio)

Adio and Ocholi got an authentic taste of research this summer, Kagan says, including the real-world successes and obstacles, or “joys and pitfalls,” that doing such complex studies can present. Recruiting participants did not happen as speedily as the team would have hoped, for example. But this bump in the road, Kagan says, gave Ocholi and Adio a taste of that real-world perspective on conducting research. The students also became intimately familiar with the importance of collaboration. Their summer included regular meetings of the study’s academic clinical partnership team, involving nurses who work hands-on with cancer patients, social workers, and Abramson Cancer Center leaders, as well as Kagan, Evered, and Whitney. Kagan notes that seeing this teamwork across disciplines with a shared goal of improving the experience of care partners is a valuable lesson on its own.

“With Abi as a future nurse and Akin as a future doctor,” says Kagan, “exposing them to this kind of collaborative thinking, we hope, will imbue their careers with a different sensibility.”

Ocholi and Evered interviewed the first participant toward the end of the summer, which “went really well,” Ocholi says.

“This experience definitely got me interested in pursuing cancer care for my future as a nurse,” she says. “I can also definitely see myself involved in another research project in the future.”

Adio, too, sees direct applications of his work this summer to his future career as a doctor.

“Something that has stood out to me so far is that medicine isn’t just what happens in the hospital,” he says. “It’s not just what the doctor does and the procedures that happen. A lot has to do with what happens outside of the hospital. Speaking with patients and interacting with caregivers—those who have a responsibility for the behind-the-scenes work of medicine—has made me realize that their job is just as important as the doctors’ work, if not more so.”

Akin Adio is a second-year student in the University of Pennsylvania College of Arts and Sciences from Mohnton, Pennsylvania.

Jane Evered is a postdoctoral trainee in the University of Wisconsin, Madison, School of Medicine and Public Health.

Sarah Hope Kagan is the Lucy Walker Term Professor and professor of gerontological nursing at Penn’s School of Nursing.

Abi Ocholi is a third-year student in Penn’s School of Nursing from Houston.

Clare Whitney is an assistant professor in the Stony Brook University School of Nursing.