How Patients Can Stay in Touch Without Undue Effort, Cost or Stress
It is no longer necessary for someone to spend an hour or so telephoning family and friends with updates when you are going through a medical ordeal. Modern technology can make it much easier to stay in touch!
You don’t have to put your sensitive medical updates in Facebook where everyone there can see them. You can decide who should be in your inner circle for health updates and set up something that only they can see—and as with Facebook, you don’t need to spend money or know how to write software to do it.
Flash: There is now a way for your free health crisis communications center to also serve as a coordinator for friends who want to bring meals to you, walk your dog, mow your lawn, and so on during your recovery.
Use a No Cost and Low Hassle "Communication Center" for Patients and Caregivers
With no technical ability and no budget, you can set up a web page to stay in touch with loved ones during a health crisis. No more exhausting and time consuming telephone tree!
Why Use the Internet to Update People About Your Health Crisis?
When my mother had lower back surgery, I was her caregiver. She prepared a long list of names and phone numbers of people for me to contact with updates about her progress. Since cellular (mobile) phones aren’t allowed inside the hospital, after she came out of the recovery room I had to make a choice:
- Stay in the room with her in case anything went wrong, relay requests to nurses, and generally be a comforting assistant, or
- Stand in the parking lot (car park) outside calling all the people on her list
I spent more than an hour and a half making phone calls in the parking lot — not just then, but every time family and friends needed to be informed about news regarding her recovery. A few months later she had a hip replacement and we did that whole routine again.
We wouldn’t do it that way now. Friends introduced me to a couple of websites where it is easy to set up a web page for a patient to use as Communication Central with loved ones. It’s better all the way around. There’s no cost to set it up. There’s no need to know anything about software programming. It’s easy to establish logins so that only people who have been granted permission can go to the web page, see updates and post supportive comments — and believe me, this is not the kind of information you would want to put on Facebook. A more select group of people is much more appropriate. People in the select group who want to get notified about updates can tell the page to send them email automatically when there is new material for them to see.
Posting an update only takes a few minutes and can be done whenever the patient or caregiver has a chance. Unlike taking a phone call, it doesn’t have to be done when someone needs to be resting. Unlike placing a phone call, it only has to be done once and everybody involved can get the information, instead of a couple of hours of repeating the same message—and people can get the updates when their schedule suits them. They might have issues of their own to deal with, and this fits around their issues just as neatly as it fits around the patient’s need to recuperate.
Specificially Designed for Health Crisis Communication
These are not forums about health care issues. They are places where you can easily set up a website (without knowing how to write software) where you as patient and/or caregiver can post about what’s happening in your personal health odyssey, and friends and family can respond—without needing people online at the same time, and without floods of email. You can make your health crisis web page public or limit it to just the friends and family you choose to allow to have a login. The trend is for these sites to be free. They may request donations or they may show Google ads to cover their costs of operation.
A close friend undergoing cancer treatment used Meal Train. It’s the superhero version of Caring Bridge and CarePages. In addition to communication, it has a calendar where friends can sign up to deliver meals during her recuperation. No need for zillions of emails and phone calls to coordinate—a friend who wants to bring a meal just logs in, looks at calendar for a date that isn't taken yet and fits their personal schedule, and signs up to bring a meal that day.
I used it myself when I had surgery on both feet. It’s free if all you need to coordinate is meals, but for a one-time fee of $10 USD the calendar can be used to coordinate other things too. For me, that meant walking the dogs at midday and some rides to hospital appointments.
My introduction to this website came when a contributor to a book I was editing turned up with cancer. A cousin used CaringBridge to keep family and friends posted about her cancer treatment. That isn't the only type of health crisis you can use these sites for, but it is disturbingly common. CaringBridge seems to be the most popular of these websites and some hospitals recommend it to patients.
A friend used this to keep family and friends posted about her treatment for a recurrence of breast cancer. I knew about general sites for staying in touch with friends, but this was my first brush with sites specially designed for people who want to keep people up to date about a medical crisis without needing to know anything about web programming.
As with CaringBridge, cancer patients seem to be the majority here, but it isn’t just for people with cancer. Unlike CaringBridge, CarePages shows Google ads to help fund itself. There are subtle differences. My cousin’s CaringBridge guestbook is one book for responding to all her posts. CarePages links messages of support with the post to which a visitor responds. CarePages also has discussion forums — you don't have to participate in those, but they are available.
More Articles about Such Patient-Communication Technology
Commentary about CaringBridge at BetterHealth
This is a blog post about how CaringBridge got started and how it is used.
Womenetics Interview with CaringBridge Founder
This is an interesting interview with Sona Mehring, the founder and CEO of CaringBridge. It isn’t limited to the 1997 startup of the site. Note that CaringBridge is registered as a 503(c)(3) non-profit in the USA. That means donations to it are tax-deductible.
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