When Beth found out that her husband had cancer, a friend suggested that she look into creating a page on CaringBridge.org. As she puts it, “CaringBridge became a tool to help us communicate with others.”
I spoke with Sona Mehring last week, who is the owner of CaringBridge. The site started as a simple webpage for a friend of Sona’s who was going through a difficult pregnancy. Sona and her friends used the site to keep friends and family informed of updates, keeping everyone in the loop without having to make several phone calls each day.
Thus, CaringBridge was born. Anyone with an illness or those who are taking care of someone with an illness can create their own webpage through the site to keep friends and family informed of the patient’s progress. It’s free, there are no ads, and Beth states, “I appreciate its ease of use. It is an intuitive interface, so it didn’t take much time at all to set up and use. I’ve never been frustrated using it!”
Sona pointed out that using the site is beneficial to 3 different groups of people. The patient stays connected to family and friends through updates. Those who get updates can then sign a guestbook with questions or words of encouragement.
The patient’s main caregiver can also benefit from messages of support. Being a primary caregiver can become very isolating as they become more and more involved with the patient’s day to day care – traveling to appointments, trying to procure test results or helping out in the hospital. The caregiver might also find comfort in being able to journal their feelings on the site.
And the site can aid the community’s ability to rally around the patient and caregiver. Sona mentioned a study showing that contact with family and friends can decrease significantly when someone is diagnosed with a major illness. One of the biggest reasons was that the patient’s community did not want to “bother” the patient or caregiver. This concept was not lost on Beth, who said, “I sense that some are eager to keep in the know, but do not want to feel like they are bothering me.”
CaringBridge not only connects patients with community; it also connects patients with other patients. Sona explained that patients and families often meet others going through the same thing in waiting rooms or treatment rooms and swap CaringBridge websites, thereby forming a support group of sorts amongst themselves.
Sona says that people come to use the site mainly through word of mouth from current and previous users. Hospital employees also refer patients and families, and CaringBridge is active in trade conferences as well.
Personally, as a nurse, I think this site is a fantastic idea. I certainly have days at work when I’m getting call after call inquiring about the status of a patient from different family members. We always encourage families to designate one person to call the unit for an update and then disseminate that information to everyone else. Rather than making numerous phone calls, that designee can update the website. People visiting the site can enter an email address to be updated automatically every time an entry is made.
Beth did say that it’s sometimes difficult to know how to say things: “One of the challenges has been knowing what to share and how to share it, as the information is broadcasted.” She went to on explain that when both caregiver and patient are contributing to the site, the needs of both need to be taken into account. One person may have the desire to share a lot of information when the other person might want to show a little more restraint.
The last feature about the site I want to mention is the ability to easily turn a journal/pictures/guestbook into a real book. Sona mentioned that some of these books are even used at memorial services.
If you’ve been reading codeblog for awhile, you know that I don’t regularly endorse websites. I find CaringBridge.org to be exceedingly useful to patients and families and wanted to help spread the word.
*This blog post was originally published at code blog - tales of a nurse*