It's a familiar wall of awkwardness that hovers between two well-meaning people. You learn that a friend or their family member is experiencing a serious health problem. "Let me know how I can help!" you say. But the friend provides no suggestions.
So you go with the default Minnesota response and drop off a hot dish. Unfortunately, so do 12 other people. Hope your friend has a big freezer.
Now let's say it's you or a family member with the health problem. From your perspective, a hot dish is just one of a long list of favors you could really use right now.
Like, if only someone could watch the kids after school sometimes. Or drive you to your clinic appointment. Or shovel the driveway. Walk the dog. Pick up a prescription. Oh, and you're running low on bread and dish soap.
But how do you ask for all of that when asking for help can be so hard for self-reliant Minnesotans? How do you delegate when you're feeling overwhelmed?
Enter a new tool by CaringBridge, the online social network where people provide information about their serious health problems.
Called the CaringBridge Planner, the tool is similar to putting an appointment on a digital calendar. You click on the category of help you need — transportation, food, pet care, child care, chores, errands, visits, general (for example, pill reminders) — and up pops a form for specifics:
Bring dinner Oct. 2 at 5 p.m. to this address (a map appears, showing the location). There's a space for further details ("dairy free, please" or "snow blower is in the garage").
You can make the requests for one time or set them to repeat. Friends and family can scan the calendar and volunteer for chores that work for them.
The feature helps ease some of the hesitancy about asking for help, said Svetlana Yarosh, a member of a University of Minnesota research team that analyzed CaringBridge journal posts in 2020, all scrubbed of posters' identities.
Yarosh's team "focuses on how people connect with each other through technology," she said. They were allowed to analyze millions of journal posts from CaringBridge.
"This data set was immensely interesting," Yarosh said. "Millions of people were talking honestly with their support networks about their health journey."
The team wanted to examine whether various patterns of behavior — length of posts, for example — might be correlated with people staying on the site longer or possibly experiencing better health outcomes.
The team found that people tend not to ask for the help they need. About 45% of patients and nearly 60% of caregivers said they need support more frequently than they ask for it. In fact, around 20% of patients and 30% of caregivers almost never ask for help, even if they said they needed it.
"There's a social stigma — maybe that's a strong word, but it's awkward to ask for help," she said.
One anonymous cancer patient, for example, exemplified the challenge: "I need help getting my kids from one event to the next. It was a challenge before, but now that I have multiple doctor's appointments every week, it has gotten much more tricky. I need help getting food in the house and keeping the pantry stocked. ... So you can see I am struggling. I am not at all used to asking for help. I know that I cannot do all of this alone."
950,000 personal journals
CaringBridge is celebrating its 25th anniversary this year. The Eagan-based nonprofit network serves as a one-stop shop for communications during a health crisis, saving people from having to call everyone they know. Patients — or, more frequently, their caregivers — post condition updates, letting family and friends stay informed and show support.
Since its launch, 950,000 personal CaringBridge journals — a chronological series of posts detailing a patient's journey — have been created, according to the site's staff. Combined, those pages have received 2.5 billion visits.
But two years since its launch, few users seem to know about the planner. CaringBridge CEO Tia Newcomer estimates that 1,000 people a month, authors and supporters combined, use the planner, which is "nothing to sneeze at," she said, but isn't much considering 400,000 people a day use the site.
Many CaringBridge users probably aren't aware the feature exists, Newcomer said. "We think we need to make it easier for them."
Making caregivers' lives easier
CaringBridge is always looking for ways to make caregivers' lives easier, said computer scientist Sona Mehring, who created the site in 1997, long before most other social networks existed (Facebook founder Mark Zuckerberg had just turned 13).
Journal entries tend to focus on patients' conditions. But the burdens facing unpaid caregivers are increasingly clear. A 2020 Blue Cross Blue Shield study found caregivers suffered 26% greater than average impact from health conditions.
"If a caregiver is not emotionally and physically healthy, they cannot give the care they need to give," said Mehring, who retired in 2016. "That was always in our mind."
CaringBridge has partnered with GoFundMe, a website people use to raise money for specific needs, including health crises, so authors can connect directly with GoFundMe's fundraising tools. GoFundMe does "a very good job of vetting" to make sure users have a legitimate need for donations.
In the future, Yarosh suggested, apps such as Uber or DoorDash could let people help from a distance. For example, if her mother needed a ride to a doctor's appointment, "I'm not going to fly to Maryland, but if there was an easy way to call for an Uber, I'd use it," she said.
"I could ask my mom's favorite takeout dishes and, bam, treat her to lunch."
Over the years, Mehring said, she resisted offers that could have made the site much more profitable, such as merging with a large health care system or even just running advertising for pharmaceuticals or florists.
"I explored all those models — nothing really seemed right," Mehring said. When the site became an official 501(c)(3) nonprofit in its third year, "the picture became very clear of not only is that a great way to fund this service but keeps it true to its mission."
CaringBridge leaders are determined to keep the site a nonprofit, relying on donations (there's a button in the upper right of every page that people can click to donate) so it can continue focusing on caregivers, Newcomer said. The site receives 90% of its funding from ordinary people — the average donation is $53.
"No one is really doing what we're doing," Newcomer said. "I'll get asked, 'Who's your competition?' It's hard to really say. What CaringBridge has is still unique."