Eliminating the Miles Between Us

Heartbeat Eliminating the Miles Between Us

By Kimberly Turner

Innovative new ways of staying connected will serve patients, caregivers, parents and members for years to come.

Support is at the core of Mended Hearts and Mended Little Hearts’ missions, so when COVID-19 made it impossible for chapters and groups to meet and for accredited visitors to go into hospitals, leaders knew they had to act quickly. They sprang into action to create several programs and solutions that will serve members, patients, caregivers, parents and families — even after the quarantine of 2020 is a distant memory.

“We are still here to help,” says Shannan Pearsall, coordinator of MLH of Long Island. “We just have to be more creative with how we do that right now.” MH and MLH leaders and members shared how these creative options are working and how they’ll continue to provide additional support, education and resources in the future.

Together Apart

Before his chapter’s first meeting on Zoom (an online platform that allows groups to see and hear one another), Bob Hoffman picked up the telephone and called 20 members of Greater Hartford Chapter 9 — something he encourages all chapter and group leaders to do when they’re hosting Zoom meetings.

“I told them we were having the meeting online and that we’d love to have them attend,” says Hoffman, executive vice president of Mended Hearts. The meeting drew more than twice as many attendees as a regular in-person meeting.

“We were shocked that it went as well as it did,” Hoffman says. “Everybody seemed very comfortable, and it was nice to see people on the screen. People showed up who we hadn’t seen in over two years.” Maryann Mayhood’s group in Washington, D.C., has had four meetings via Zoom. She says it’s been a lot of fun to see other heart parents that she’s grown close to, but the platform also gave the group a way to connect when one member needed it most.

“Our group experienced a great loss at the beginning of this pandemic,” Mayhood says. “One of our group leaders lost her daughter due to her heart. It was such a hard time for the core group of us who have become very close, because we weren’t able to be there physically to support the family the way we normally would be.”

When the mother felt comfortable enough, she joined the Zoom meeting, which Mayhood says was “very cathartic.” They were able to cry and talk to one another, even when they could not physically be together. Mended Hearts has created a toolkit of resources to help members understand how to use Zoom and even some tips on Zoom etiquette and best practices (remember that people can see you when your video is on, show up on time, be supportive of others, etc.).

This new way of supporting people will help ensure that patients, caregivers and families can continue sharing stories, worries, accomplishments and issues in a caring, supportive environment with people who understand them. It also removes barriers for people who may not be able to travel to in-person meetings due to mobility issues, distance, busy work schedules, childcare obligations or other factors.

“Using technology, we can eliminate all of the miles between us,” says Pearsall. “All of those restrictions disappear, so to me, this is a wonderful alternative when you can’t have your monthly meeting or do peer-to-peer visiting at hospitals.”

Social Connections

Weekly chats on the Mended Hearts and Mended Little Hearts official national Facebook pages are another way that members are staying connected during this challenging time. Members can visit the Mended Hearts page on Mondays at 7 p.m. ET or the Mended Little Hearts page on Thursdays at 8 p.m. ET to enjoy social time with other members. If they can’t join in real time, they can visit at their convenience and jump into the conversation; the question posts and their answers are left on the page permanently.

“My intent was to steer clear of all things COVID-19,” says Pearsall, who organizes the MLH chats. “I didn’t want it to be a place where we all got sucked into cyclical thinking and worrying. I wanted it to be the opposite. It’s meant to be lighthearted and a place for us to just sort of disconnect for an hour or so.” To that end, the pages tend to ask questions about things like participants’ go-to exercises, book suggestions, recipe ideas and holiday celebrations during lockdown. MLH’s questions typically reach between 3,000 and 6,000 heart parents, while MH’s chats draw visitors from as far away as Australia and the UK; some come back every week.

“I enjoy being part of this group and knowing I am not alone,” said Amanda Primus, one of the participants. “I just had open-heart surgery. This was my very first open-heart surgery. Having a supportive group has helped me to become me again with accepting my scare. I am in Minnesota and truly appreciate… these webinars and the Monday evening Facebook chat.”

Pearsall says there’s no plan to stop having the weekly chats, even after the threat of the virus has passed: “Where it involves social media, my policy is I will keep doing it as long as somebody out there says they’re finding value in it. If someone found a sense of comfort or was able to connect, that’s reason enough to keep doing it.”

Mended Hearts Executive Director Andrea Baer agrees, saying, “I think the beauty of these virtual options are that even when things go ‘back to normal,’ we have found a whole new way to reach people who may not be able to go out or who don’t have a chapter close to them. I think it has opened up a whole new world of possibilities for us.”

Virtual Visits

Keeping existing members connected and supported is vital, but so is reaching current heart patients and new heart parents who may be dealing with a frightening diagnosis during a time when they are more alone than ever before. Just because accredited visitors are not able to visit in hospitals, it does not mean MH and MLH can give up on reaching these people during their time of need.

Fortunately, virtual accredited visiting programs can provide patients and heart parents with an option to video chat as well as receive visits by telephone, text and email. Baer says more than 7,900 telephone visits were conducted last year through a referral program with another nonprofit.

“It isn’t the same as face-to-face, but it sure is nice to have a friendly voice on the other end of the phone saying, ‘I know how you feel.’ And I think that right now that’s probably more important than ever because a lot of the older population are truly isolated, and that phone call can be like gold to them.” A weekly virtual visitor training program is up and running for accredited visitors because, Baer points out, virtual visiting presents different challenges than in-person visiting.

“We want people to have the tools they need to be successful with virtual visiting,” she says. “If you’re doing a video chat, for example, you have to be very cognizant of your surroundings. Privacy is important, so you need to make sure you’re in a place where people can’t overhear you. Active listening can also be a lot harder because you don’t have the physical cues to help you know when to speak and when to pause. We’ve been doing a lot of training on how to really actively listen when you’re making a phone call.”

Virtual training also includes topics such as empathy, rules of conduct, diversity sensitivity, confidentiality requirements and HIPAA compliance.

A brand-new microsite called MyHeartVisit.org allows patients, caregivers, parents and families to request a visit from an accredited visitor who has a similar diagnosis or a child with a similar diagnosis. Visitors to the site (and possibly, one day, an app) can request a visit via phone, video, email, text or live online chat. Visitors will be able to go in and select someone from their queue of people who want to receive a visit.“It’s exciting because this is something we have wanted to do for a very long time,” says Program Director Jodi Smith, adding that the site will replace the clunky manual processes that are currently used for online visiting. “I’m really excited about it for sure.”

The new microsite — which Smith says must be carefully launched in a way that ensures there are enough accredited visitors ready to fill the needs of those who request a visit — also removes some of the limitations of in-person visiting.

“We aren’t bound by geography,” she says. “There may be people who want to connect with one another because of their disease versus connecting in a specific geographical area where I might be the only person in that area who has that disease. Not being bound by geography is really nice.”

Eventually, a telephone hotline called the Mended Heartline will be available for people who want to call in and speak to a trained volunteer immediately when they need support.

Other Resources

While support is always a priority, MH and MLH are also engaging in advocacy work that protects patients during COVID-19 and providing reliable information and educational resources.

New webinars on topics such as COVID-19 and managing stress during times of crisis are available now, and more will continue to be added. “We’re really taking a full heart and mind approach,” says Baer. “People are struggling with a lot of things they wouldn’t necessarily have been struggling with before, on top of their regular heart disease complications and issues. We’re trying to make sure that we meet the emotional needs as well as the physical needs of patients.”

A series of short (two- to five-minute) videos from patients, caregivers, parents and family members will also be posted on YouTube and social media to help viewers relax, laugh and cope with stress.

Finding accurate, reliable information during the virus crisis can also be a challenge, so Mended Hearts has created a resource page here. There, visitors can find regularly updated information on COVID-19 specifically for cardiovascular disease patients across their lifespan. There also are upcoming webinars, recorded webinars, trusted websites and resources, mental health resources, financial resources and more.

Into the Future

Quickly finding new ways to support one another from afar has been a short-term challenge, but the solutions that Mended Hearts and Mended Little Hearts are putting into place now will have long- term benefits. “I find it super exciting,” says Smith. “The benefits are not limited to right now.”