Maintaining Patient Connections with Online Support Groups

The dawn of COVID-19 has brought change for all of us, but for cancer patients and survivors, that change has been particularly profound. Whether they are in active treatment or survivorship, people living with cancer often experience significant physical limitations, and this pandemic has put considerable restraints on aspects of all of our lives.

The accompanying loneliness that this isolation can bring has no easy remedy. Before COVID-19, many patients, survivors, and caregivers had the option of attending support groups that brought them into the company of other people also living with cancer. The effect such groups can have in the lives of patients and their loved ones is often significant. Being able to communicate with others experiencing common challenges is a powerful coping tool.

Part of the cruelty of COVID-19 is that the imperative to stay well by sheltering in place eliminates the option for group gatherings and other much-needed sources of peer support. As the pandemic swept the nation earlier this year, and as healthcare facilities subsequently closed their doors, support groups and services were among the first casualties. Patients accustomed to regularly coming together to share their challenges and triumphs were suddenly confined to their homes.

As with many other groups and organizations, some cancer programs and practices have reached out to their patients virtually to provide the encouragement they once enjoyed in face-to-face support groups. Since March 2020, Elizabeth Bornstein, MSSA, LCSW, OSW-C, APHSW-C, an oncology clinical counselor at the Sarasota Memorial Cancer Institute in Florida, has helped the patients she once counseled in person transition to virtual sessions.

“My mission has been to meet and help people where they are,” says Bornstein. “Since March, Florida residents have had to hunker down at home, and that includes our cancer patients and their loved ones. So for them to be able to step out of their isolation, even for just a little bit each week, and to feel a sense of connection to others going through similar situations, is so important.”

Bornstein spoke to ACCCBuzz to explain how she was able to keep the lines of communication among patients open after her clinic’s doors closed.

ACCCBuzz: What support groups does the Sarasota Memorial Cancer Institute provide?

Bornstein: About two years ago, we took responsibility for a range of cancer support and wellness programs that we had previously collaborated on in our community. We became responsible for 20 types or locations of group programs with 75 groups happening each month. All groups are under the umbrella of our integrative cancer support and wellness services known as the Thrive Program.

All these groups were ongoing prior to COVID-19. They are all outpatient and meet at different locations in our community. People with cancer and their loved ones could attend based on what was most interesting, helpful, and convenient for them location-wise, and they had free access to all of them.

ACCCBuzz: What were your groups like before the coronavirus struck?

Bornstein: Of the 20 groups, some are cancer-specific monthly, weekly, and bi-weekly gatherings, and they include networking and education groups, support groups, arts-based groups, and others, such as meditation, yoga, tai chi, and qigong. They were happening at different locations until March, when we put the Thrive Program on hold because of COVID-19. We serve a community with a predominantly senior population and our groups are open to adults of all ages.

Our groups are facilitated by a range of professionals: nurse navigators for networking and education groups, licensed mental health professionals for weekly support groups, and certified practitioners and instructors for the other groups. I facilitate a weekly patient support group and a weekly patient and caregiver support group with a nurse navigator, and a colleague facilitates a weekly caregiver support group. Our goal has been to provide these groups in person for our local community members who can benefit from these connections with one another close to their homes.

ACCCBuzz: What happened to your groups once social distancing became necessary?

Bornstein: Out of an abundance of caution and due to social distancing guidelines, we put our groups on hold in the beginning of March at the direction of our leadership. Knowing how important these groups are for connection and support, I was very concerned about abruptly ending them. I reached out to each of the group members by phone, just checking in on how they were doing in the midst of COVID-19 and asking how they were going about their day-to-day lives.

My colleague who facilitates the caregiver group was doing the same. In conversation with our Thrive Coordinator, I expressed concerns about the level of isolation our patients and their loved ones were experiencing with their groups being on hold. I offered to pilot the virtual groups, and the decision was made to move forward. We knew it was the right thing to do.

Since we already knew the people coming to the groups every week, and we had already completed their registration forms, we felt comfortable moving ahead. We consulted with our legal department and were told our existing registration forms were sufficient. We decided we would wait before adding additional group members until we had a comfort level with the virtual process. We informed our group participants about our move to virtual groups and gave them instructions and practice options. I began conducting support groups virtually in the last week of March, and my colleague began her group in the beginning of April.

ACCCBuzz: Did you encounter technology or learning roadblocks?

Bornstein: The biggest challenge was that many participants had never used video conferencing like this before, so they didn't really know the etiquette or what steps to take to join.

I shared the with them the instructions that we created, and I offered initial and ongoing support as needed, including practice time to master the process of logging on. I gave them a backup plan if something went awry with their video, so they could always call in on the phone line. In one of our weekly groups, the majority of people were not initially comfortable with using the video, so we opted to use audio only for that group.

We decided to use the call-in option as a back-up, as with technology, connectivity can always go awry. There is a high level of uncertainty with COVID-19, so we didn’t want the technology to cause undue stress for our participants. We provided reassurance and reminded the participants that the goal is to stick together no matter what challenges come our way.

ACCCBuzz: Is it more challenging serving patients in this space?

Bornstein: Access to and understanding of technology is a barrier for groups like ours and for people in general who want to stay connected with their family and loved ones during this time. It can be overwhelming and anxiety-provoking for those not accustomed to using these tools. In our groups, we celebrate getting on the virtual group and maintaining the connection in whatever way is doable. Whether via audio or video, we have proven that our patients can maintain their connections to their groups, and that is pretty amazing. It is working so well, we’ve decided to add new participants as they express interest. We are completing the registration forms with them ahead of time by email or postal service, and then training them on how to join groups when they meet.

As we well know, cancer doesn’t go away because of a pandemic. Our group participants have still had to endure tests, procedures, and treatments as well as difficult decisions, changes in their goals of care, and even the end of life. COVID-19 has certainly made living with cancer more challenging. Virtually, we’ve shared our sorrows and grief and have still managed to find a way for warmth, compassion, and connection to shine through.

ACCCBuzz: Do you have concerns about patient privacy?

Bornstein: Privacy is definitely a concern. That’s one reason we were reluctant to explore any kind of virtual group previously. We can't really know who is in each person's home space. We can't control who is listening. We established ground rules and review them as part of our weekly support groups. We emphasize that privacy is of the utmost importance, and what is shared in the group stays in the group. We also remind participants each week that even though we're sitting in our offices, or our living rooms, or our kitchens, these are still support groups. This is an opportunity for each person to share openly, and our privacy depends on an honor code. We emphasize that to make sure people really understand.

ACCCBuzz: What do you think the future holds for your practice’s support groups?

Bornstein: If we had a magic wand, we would go back to the way it was before COVID-19. We hope the future can bring some level of normalcy soon. Originally, when we put our groups on hold, we anticipated that they would continue online until mid-April, when we would return to the office, but things have changed quite a bit since then. There’s a lot of uncertainty we hadn’t anticipated, so we’re taking things as we go.

ACCCBuzz: Do you plan to expand these groups beyond their current membership?

Bornstein: Yes. We are in the process of bringing four of our monthly networking and education groups online. One is currently happening. We’ve also had interest in creating new weekly support groups, although we haven’t embarked on that yet.

Virtual groups offer advantages particularly for people who are reluctant to leave their homes or who aren’t feeling well enough to travel. Now that we've been offering our support groups online, I’ve heard interest from people all over our service area, some of whom have not previously attended in-person groups. Before, there was not enough participation to justify starting disease-specific weekly support groups, but now it seems there may be enough interest, particularly since people will not need to travel to their groups. Our Thrive Program is considering the potential options.

ACCCBuzz: Are there any lessons learned from your transition to virtual support groups that others may benefit from?

Bornstein: There are challenges with moving in-person groups to virtual groups in the way of completing screenings and registrations, maintaining privacy, addressing compliance concerns, and helping participants adjust to the necessary technology. Yet the benefits certainly outweigh the challenges, and it is well worth the effort. Virtual groups clearly foster and sustain human connection. As the uncertainty of the pandemic continues, our participants say that their virtual groups have been a lifeline, and they are grateful for them. We are committed to caring for our patients and their loved ones and continuing to make the groups happen.