Social media sites provide support mechanism in bad and good times
Paige Cichon has logged hundreds of hours at the hospital during her two years.
The smiley blond toddler is being treated for optic glioma, a noncancerous tumor of the optic nerve that requires 60 chemotherapy treatments to be eradicated. In a week, her parents have to squeeze in round-trip drives from Round Lake to Chicago for treatments, visits by a home health nurse to check Paige’s blood counts, quality time with 3-year-old son Will, and their jobs.
That leaves little time for parents Laurie and Kevin to deal with the emotional impact of their daughter’s illness and even less time to connect with family, friends and neighbors to provide updates on Paige’s progress. Those compassionate conversations can be the very salve needed to ease the emotional challenges that come with illness.
Surprising comfort comes from social media websites. A friend told the Cichons about CaringBridge.org, a free, not-for-profit Internet site that provides customized online journals for caregivers or patients to send to family and friends. Access to the Web page can be set to private and only permitted to those selected by the journal’s author.
“The hospital gave us a notebook and one section said that staying in touch with family and friends was important,” says Laurie Cichon. “You just read the words ‘I’m thinking about you’ and you don’t know how much that means.”
The Cichons compose an update to their website, “Our Little Paige,” about every 10 days and include adorable photos of their young daughter and her big brother. After they hit “send,” 40 members of their support team receive the new message simultaneously. Those who access the special site can respond with well wishes by clicking “sign my guest book.”
“Group hug!” and “Keep the updates coming,” are some of the loving comments entered in the journal guest book, leaving the impression that the journal guests experience a rush of feel good when they pen their comments.
A heartfelt update from Paige’s dad, Kevin, reads, “Couldn’t have gotten this far without your help.” More than 91 percent of journal authors said using CaringBridge helped their health journey, according to the organization.
St. Paul-based CaringBridge.org has been offering online journaling for the past 14 years. About 90 percent of operating monies come from donations solicited on the journal pages. While most CaringBridge sites are related to an illness or injury, the organization suggests that the site can be of service to deployed soldiers and families who have recently adopted a child. The site has received a thumbs-up from Charity Navigator which gives the not-for-profit a perfect four-star rating.
A similar site, CarePages.com operated by multimedia company Everyday Health, offers a full support package including online journals, reference information on various health issues, discussion forums and communication tips. The site is paid for with member fees.
Good times can feed the need for a social network site. MealTrain.com, founded in 2009 and ad-sponsored, provides free interactive calendars that encourage friends and relatives to make home cooked meals to ease life’s ups and downs.
“Fifty percent of our meal trains are organized around births,” said Michael Laramee, co-founder of the Vermont-based website which is a member of the Vermont Businesses for Social Responsibility.
Meal preparers access an account which includes a calendar and detailed information. There’s no chance meatloaf will be served five times in a week as site users are able to see what other cooks are making. Details like dietary needs, likes, dislikes, allergies and preferred delivery time are posted on the calendar. Meal preparers can add notes like “Congrats!” or “Hope you’re back on your feet soon.” Ads surrounding the calendar generally are food-related.
When her first baby was born, Katherine Hove of Chicago was the beneficiary of eight meals arranged by the Old Town/Gold Coast Moms Group through the site. Her daughter, Emera, was born last July.
“Just the other week I had the opportunity to bring a meal to a family who just had their baby. I would recommend it to my church if we were organizing meals for the classic reasons — new baby, surgery, loss.”
Users of websites like these say they are simple to set up. Recently a Facebook posting brought news of a friend’s illness. A quick call to the family yielded the name of a neighbor in charge of the MealTrain. After clicking a web address sent via email by the neighbor, the process of registering and reserving a date to deliver a meal took less than five minutes. Food preferences for organic items were noted; a few words of encouragement were sent to the patient and family. MealTrain immediately emailed a reminder that included the date selected, the items to be prepared and a thank-you note from the family.
The most recent journal entry for Paige Cichon brought mixed news — the end of the treatment may not be as soon as the family had hoped. Despite her illness, Paige continues to charm her family, the professional caregivers and her journal followers. “It’s nice to be able to keep in touch with people,” Laurie Cichon said. “People know what’s going on and they feel connected and we feel connected too.” If all goes according to plan, it won’t be too long before the “Our Little Paige” CaringBridge journal will come to an end, and with the click of a mouse, happy ending will be sent to the select group of journal readers.