When you’re in the midst of a personal or family health crisis, so much happens at once. Between making decisions, absorbing medical twists and turns, and just trying to stay calm, it’s hard to keep everyone you care about updated and informed. One way is to connect through online health tools that allow you to communicate with a chosen community. A popular option is CaringBridge, a website for quickly sharing information while sparing you a barrage of texts, emails and phone calls. It offers loved ones an outlet for showing support and encouragement. On a practical level, calendar and other functions help users coordinate care — and let family, friends and neighbors organize and pitch in with day-to-day tasks.
Family Journey
Natalie Bushaw, of Inver Grove Heights, Minnesota, is a CaringBridge veteran, along with her husband Ben. In 2003, she was admitted to the hospital for a difficult pregnancy, in advance of the birth of twin boys already diagnosed with severe medical problems. Logan was born with a heart defect, and Owen with a bowel obstruction. Recently, the family learned that Logan, now 12, needs a heart transplant within the next year.
“We knew before the boys were going to be born that they had a whole bunch of stuff,” Bushaw says. A nurse told the couple about a website for sharing information with family. “I was busy in the hospital but I had some time on my hands, so I went to CaringBridge and set up our page.”
Over the years, that page has turned into a running history of the family’s health journey. Posting updates is helpful in itself, Bushaw finds. “It gives you almost a sense of relief or calm, just documenting things,” she says. “And then there have been times when I’ve been really frustrated, or I wasn’t happy with the process, or I didn’t like some of the news that I was getting. So to be able to type it was cathartic in a way — either for good reasons or not-so-good reasons.”
At certain points, the family needed to reach out more than ever. “After Logan’s open-heart surgery, doctors said to us, ‘Now’s the time that you need to call your parents. We’re not sure he’s going to make it through this,'” she recalls. “And at that time, we didn’t have iPhones, so I would go to my laptop. That’s the only place I wanted to go, to CaringBridge to post, so people knew the situation we were in; so they could just be there and support us and pray for us.”
During stable times, Bushaw updates less frequently, but not without some pushback. Her parents tell her, “People want to know that the boys are OK, so can you at least post something?”
Easing the Burden
Sona Mehring, founder and CEO of CaringBridge, created the website 18 years ago to help close friends with a premature baby who was critically ill. “They had a huge group of friends and relatives all over the world, and the mom was in very serious condition as well,” she says. The couple asked Mehring to let people know what was going on. “After making just two phone calls, I realized there’s got to be a better way,” Mehring says. She used her expertise in webpage design to create a new website.
“It instantly eased the burden of telling that story,” Mehring says. “People were getting the right information at the right time.” What struck her most, she says, was “the unbelievable ability to bring that community together and activate [it] to connect the hearts behind the keyboards.”
CaringBridge grew “organically” from there, she says. Fast forward 18 years, and the nonprofit is staffed by nearly 40 people, keeping servers up and running 24/7 for users reaching nearly 36 million last year alone.
Health Community Tools
A variety of online tools can ease communication among family and friends and marshal their help. For instance, some project-minded people set up a Basecamp, a Web-based project management tool, to organize long-term caregiving and divvy up tasks — such as grocery shopping or driving to appointments — for frail or disabled parents. (The site charges a small monthly project fee.)
Online health communities offer a different way to share support as well as disease and treatment information. PatientsLikeMe connects people to similar patients and features a chart to track your individual health over time. Many online communities, like COPD-Support, focus on a single medical condition. The American Heart Association lets users register to join communities around conditions such as congenital heart defect and stroke, and users can join caregiver communities too.
And of course, there’s always Facebook. From Bushaw’s perspective, that feels too public. “Facebook is where I go to put something funny or post a picture from a wedding,” she says. “It’s not where I go to share real, sometimes hard, health information.” Privacy level choices and user attitude are two big reasons to choose CaringBridge, Mehring says. “Our sites are also protected from search engines and really just treated as a protected environment.” Most important is supporting the community rallying around a single person, she says. Instead of being about “me,” she says, CaringBridge is more about “we.”
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Keeping Communication Lines Open in a Health Crisis originally appeared on usnews.com
