Meeting the needs of cancer survivors and caregivers, UF co-hosts summer community events throughout Florida

Meeting the needs of cancer survivors and caregivers, UF co-hosts summer community events throughout Florida

- UF Health Cancer Institute researchers submitted a report to state officials outlining recommendations to address the physical, emotional and practical challenges faced by cancer survivors and caregivers.

- Proposed solutions include establishing caregiver peer support systems, as well as improving the transition from specialized oncology to primary care.

- Researchers gathered these insights by hosting community events throughout Florida, and cancer survivors and caregivers used journey mapping to identify critical care gaps.

Navigating cancer survivorship can sometimes feel like driving in a new city without GPS. The major surgery is over, but what cream do you use to reduce burning? Who do you turn to for support when you transition to primary care?

Cancer caregivers, too, can feel like they are winging it without an instruction manual. They may feel isolated, performing often overlooked but essential labor without anyone to turn to for advice or emotional support.

But a new report, shared in a series of community events throughout North Central Florida this summer, outlines ways to help both groups. In July, UF Health Cancer Institute officials submitted the report — titled "Journey Mapping: Understanding Survivorship Across the Cancer Care Continuum" — to state officials in response to a request to identify and address cancer survivorship and caregiver needs.

“We wanted to make something as actionable as possible so we could make recommendations to the state, to healthcare systems and to cancer care collaboratives,” said report author Vaughan James, Ph.D., a researcher in the institute’s Office of Community Outreach and Engagement.

There are now more than 18 million cancer survivors in the United States, and the number is expected to exceed 22 million during the next decade, thanks in large part to cancer research that has led to more effective treatments. Yet cancer survivors face numerous physical, emotional and financial challenges.

“It was, ‘If I just had a mastectomy, what bra do I buy?’” James said. “‘I sleep on my stomach, but I can’t do that anymore, how do I deal with that? What lotion do I use to reduce pain or scarring?’”

One recommendation was for health systems to form advocacy groups or boards that would allow survivors to offer input. Another recommendation was to give patients physical guides at diagnosis, and then schedule consultations 24 to 48 hours later.

“That would give people a moment to take a breath, calm down and think about what they would like to know, rather than blanking out in fear and having to resort to other people doing it,” James said.

Another survivor challenge was navigating differences between expectations and reality.

“A lot of cultural representations portray treatment as a linear process, when that’s not actually people’s lived experiences of cancer,” James said. “More could be done to properly navigate people through the reality of a constantly shifting treatment plan, which can be upsetting or confusing.”

Many survivors express feelings of isolation as they transition from cancer care to regular primary care, and researchers recommend better formalizing that handoff with the support of patient navigators. Researchers also suggest that cancer care collaboratives develop survivorship continuing medical education curriculums for primary care physicians and healthcare professionals.

To help caregivers, one suggestion was to create a “buddy system” that would pair them with a peer who had been through a similar experience and could share what worked for them.

“Caregivers need a lot of peer support that they don’t get,” James said. “What we heard from them was, ‘This was frightening and isolating. I want someone I can sit down and have a cup of coffee with who knows what I’m talking about and can understand the way I feel.’”

Engaging with the community to gather ideas and develop solutions has been a key part of the institute’s mission. To this end, a series of events were held in May and June throughout Alachua, Duval and Seminole counties at community centers and churches — a collaboration between UF and regional cancer control collaboratives.

During the events, coordinators used a research technique called journey mapping. Cancer survivors and caregivers were asked to share what helped them and what they needed at specific time points, from initial diagnosis through treatment and extending years after treatment. Three additional community events will be held later this fall.

“There’s so much value that comes from lived experience — that’s where you can get at the heart of what matters and what’s needed is to hear directly from the individuals who are living through it,” said Jennifer Woodard, M.P.H., R.N., director of the institute’s Office of Community Outreach and Engagement.

Susan Barefoot, 75, a pancreatic cancer survivor, attended one of the events in Gainesville on June 19.

“Sometimes all the healing you need is just to have someone in common with what you might have been going through who you can bounce things off of,” Barefoot said.

Ultimately, the events provided a much-needed forum for people to open up and be heard.

“One of the participants whose wife went through cancer told us, ‘I’ve never done this before. I didn’t have anyone to talk to,’” James said. “People feel really isolated and alone. We’re not going to fix cancer care overnight. But we can help people feel less alone just by asking about their experiences and sincerely listening to them.”