Louise Neigel, a patient at Penn’s Abramson Cancer Center, first learned about the Writing a Life patient writing workshop two years ago while undergoing chemo treatment at the Perelman Center. Created in 2015, the support group helps participants — most of whom are cancer patients receiving outpatient treatment at HUP— use expressive writing and prompts as a way to interpret their experiences.
But two obstacles prevented her from joining: her chemo treatments never coincided with days when the sessions were held, and she lives over 90 minutes away from HUP. COVID changed all that. A now-virtual Writing a Life for patients allows Neigel to participate … and she loves it. “It offers me so much support,” she said. “When you live far from Penn, virtual support groups give you a chance to fully participate in ways we couldn’t before.”
All Inclusive and Easily Accessible
Writing a Life is only one of the many virtual support groups offered by Patient & Family Services since the pandemic started. But getting the groups up and running was not a simple task. It was a team effort that included Laura Kotler-Klein, DSW, social worker manager; social workers Sandy Blackburn, MSW, and Courtney Bresler-Nowak, MSW; and Matt Stevenson, LCSW, mental health therapist.
In addition to quickly learning how to navigate the virtual landscape, they also needed to revise group guidelines that in-person groups don’t need to consider, for example, suggestions to find a quiet and private place for people at home or elsewhere to join the virtual group. And, as with all support groups, “we emphasize diversity, respect, kindness, and confidentiality.”
And they had to make sure it was easily accessible. “We didn’t want any barriers to participation,” Blackburn said. “There’s no need for a computer. You can access with any telephone — a landline if necessary. Most people want the visual element but some don’t.”
Typically, support groups are disease-specific, i.e., for patients with breast cancer, colon cancer, etc. Before COVID, “we had experimented with open groups — where participants would be diagnosed with any cancer and in any part of treatment — but they had not done well,” said Heather Sheaffer, DSW, director of Patient & Family Services. “What has worked in COVID mode is the exact opposite.
“Patients are looking for an opportunity to interact with others,” she continued. “It’s been a complete 180-degree turn. Patients and families get so much support in waiting rooms but that no longer exists. This is one reason the virtual groups are so successful. They’re getting informal support.”
Expanding Writing a Life
Writing a Life for Caregivers and Patients is another in-person support group that has transitioned to a virtual venue. And, in the COVID environment, it has served as a conduit for bringing families together when visitor restrictions in hospitals kept them apart.
Indeed, Blackburn was able to virtually unite an inpatient and her husband, who was at her bedside, with their adult children just before the start of a session. The children were all gathered in front of a computer at the family home. “The children were engaged in the overall group and responding to others,” Kotler-Klein said. “It was so powerful to have the family join the group.” The same session united an adult daughter and her mother, who were in different states, for this real-time activity.
Members of Patient & Family Services also created a new virtual Writing a Life for Physicians, providing the ACC’s doctors, too, “an opportunity for a time of reflection and expressive writing that they otherwise may not have the opportunity to do,” Blackburn said.
Deborah Burnham, PhD, associate undergraduate chair in the University’s Department of English, leads all of the Writing a Life groups. At each session, she provides prompts, such as poems, articles, and illustrations, that she hopes will resonate with participants. For the physician group, she used “The Doctor,” a painting of a 19th-century physician sitting at a child’s bedside.
Although Frank Leone, MD, MS, director of Penn's Comprehensive Smoking Treatment Program, does not have a pediatric practice, “the image was deeply personal to me. It reminded me literally of what I do in the ICU, sitting at a patient’s bedside, feeling frustrated and not being clear about the decisions I had made… the uncertainty,” he said. At the session, he discovered that “dealing with this uncertainty was a primary source of my stress. You may not be aware that this is a stressor but when you learn this, you can manage it better… because it won’t just disappear.”
Burnham said that the virtual setting has not lessened the emotional impact of these sessions. “People still laugh and cry a lot — a measure of virtual intimacy. One person suggested a t-shirt for the group, with a box of Kleenex as a logo!” she wryly noted. “But, if they didn’t choke up listening, that would be a problem. It would mean they weren’t getting that empathy we get face to face.”
Talking with Those Who Understand
What’s On Your Mind? — another of the newly created virtual support groups — lets patients talk about whatever they want, be it Amazon deliveries, the impacts of COVID or just sharing feelings about having cancer that they might not want to burden on caregivers. In the group, “you can share intimate details that only people with cancer would understand… your fears and triumphs,” said ACC patient Shawn Anthony-Morton. “Talking also helps you understand that what you’re going through is normal.”
Anthony-Morton, who has been cancer-free for three years, likes being able to share this news as well. “It’s nice to see someone making it, when you so often get bad news.”
This group also serves “as a portal to our department to get connected to other supportive services, like counseling and nutrition,” Kotler-Klein said. “As things develop, we can direct patients to resources and provide emotional support.”
Another virtual support group, The Caregiver Support Group, which debuted in July, provides caregivers with the same ability to share their thoughts. With no registration needed — it’s drop-in only — the open discussion is an effort to meet the needs of caregivers and provide resources.
Patients with advanced cancer understandably feel a lack of control in their lives. “The only thing you can control is your response to it,” Blackburn said. “What do you want to do with the time you have left?” Another new virtual group — What’s the Meaning of This? — is helping them do this.
The group uses Meaning-centered Psychotherapy (MCP) to help patients maintain or increase a sense of meaning and purpose in their lives, despite cancer. Kotler-Klein, Blackburn, and Megan Melick, MSW, attended a training at Memorial Sloan Kettering to learn how to use the principles of MCP to help their patients. Each of the virtual sessions focuses on specific sources of meaning in their lives and what’s important to them as individuals.
“When COVID-19 forced us to work from home, we were in despair that our groups would no longer be able to flourish,” Kotler-Klein said. But, by eliminating barriers like travel, traffic, parking, and illness that prevent patients from leaving the house, “it was the best possible outcome.”
To learn more about these virtual support groups, call Patient and Family Services at 215-615-0534.