By Marilynne Rudick
Last month I spent two weeks at the National Rehabilitation Hospital recovering from a hip fracture. I was grateful for all the cards, calls, food and flowers from friends. But sometimes keeping friends updated on my progress was draining. I found myself repeating the same information to each caller. And the phone seemed to ring whenever I managed to nap. My husband was also busy responding to phone calls and emails from family and friends.
Is there a better way of keeping friends updated? I could post updates on Facebook. But what about friends who don’t use Facebook? Sending group emails is another option, but that means tracking and answering individual messages.
Patient Websites Streamline Communication
For many people, especially those facing long-term or life-threatening illnesses, the solution lies in a particular type of social network-a patient website. These websites are designed to facilitate communications among patient, caregivers and friends. The largest and most popular services are Caring Bridge and CarePages. Both of these services offer free websites that are easy to set up and update.
On Caring Bridge and CarePages, the patient, friend or family member can set up a site. Using a template, you enter basic information about the patient and post updates as appropriate. Friends can learn about the patient’s condition by visiting the webpage. They can sign up to receive updates by email. Guests can leave messages for the patient or family in an online guestbook.
While Caring Bridge and Carepages offer similar functionality, they differ in how they are financed. Caring Bridge is a nonprofit, funded by donations. CarePages, sponsored by hospitals and other health care entities, is funded by advertisements and e-commerce. Friends can purchase and send flowers, gift baskets, balloons and other gifts directly from the website.
What Can I Do to Help?
The inevitable question that friends ask upon learning of an illness is “What can I do?” Lotsa Helping Hands is set up to answer that question by providing a free website for a patient or a community. Religious organizations, neighborhood groups, schools and workplaces can use calendars, message boards, blogs, and event invitations to make it easy for friends and family to help out by volunteering to cook dinner, drive a patient to medical appointments, schedule visitors, or provide any other service the patient or caregiver needs.
A LifeLine for Cancer Patients
MyLifeline.org provides cancer patients with a free personal website to build an online community for patients and their caregivers. The website lets patients blog about their illness and includes a calendar where family and friends can sign up to cook meals, drive a patient to medical appointments or provide a respite for caregivers. Friends can leave messages of support as well.
My LifeLine provides information about different types of cancers and treatment options to educate friends. It offers an extensive list of resources for cancer patients from support groups to financial assistance, clinical trials and even humor therapy.
When you’re ill, there’s nothing like a visit or a phone call to cheer you up. But when you’re not up to visitors or calls, or if updating friends becomes too time-consuming or emotionally draining, patient websites streamline communication between you and the friends and family who want to help and support you.
- Take a look at a sample Caring Bridge patient website.
About the Author: Marilynne Rudick writes about web tools and technologies in her WebOver50 blog. She believes the web is wasted on the young, and her blog explains web apps– social networking, blogging, YouTube, and the treasure trove of new web tools—for people like herself: an over50 history major.