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Danielle Moore Instructor: Malcolm Campbell English 1103 4-4-12 Online Care Websites Today, almost everything we do is online: homework, shopping, reading, researching, communicating, and other everyday things. Nowadays with Facebook, Twitter, Google+, and other blogging sites, people do not even need to talk to their friends, acquaintances, classmates, co-workers, etc. in real life anymore. As long as you ‗follow‘ or are ‗friends‘ with these people online, you can always keep up with them. Most people know that others rely on the Internet for all kinds of health related information about symptoms, treatments, doctors, costs, medications, hospitals, care, and many others. This is why people created online care pages. Online care pages are websites designed to create a bridge between patients and their concerned loved ones. With the online database we have, it is much easier to inform a lot of people at one time. These care pages are just what we need to make things easier for patients and their families to relay information. Dick Meyer, a journalist, stated ―…It is clear to me in my dotage that intimate, enduring human relationships — community — are the most important medicine for patients in long struggles with cancer‖ (Meyer). Meyer recently had a 2nd cousin die from leukemia at a very young age and writes this article from his experience with CarePages, a leading online care page websie. Dick Meyer is completely right and this statement is the main reason why online healthcare support was created. Let‘s face it, no one wants to go
through troubled times without some love and support. The use of Internet is evolving in a way that fulfills the needs of patients, needs that used to be hard to fulfill when your loved ones were thousands of miles away. Now, with the Internet it is much easier to keep up with and help your loved ones in cases of need. Dr. Sharon Langshur, co-founder of CarePages, writes: …anyone who has cared for someone with health problems knows it takes more than medicine to help people heal. (The word ―disease‖ literally means ―without ease,‖ which tacitly acknowledges the psychological and emotional distress of illness.) In the last several years, the transformation of the Internet, commonly known as Web 2.0, has opened the door to exciting new possibilities for facilitating ―whole-person care.‖ (Langshur) Whole-person care refers to the process of taking care of someone involving physical, emotional, social and spiritual elements. It is proven that patients who have support and love recover faster than those who do not. The biggest question in the process is; does online care/support replace that in real life? Same Thing? Many would agree that online support is certainly not a replacement for physical support. It has been argued that online care can be better than in-person care but it just depends on the relationship. In his article Mourning in a Digital Age, New York Times, columnist Bruce Feiler writes: … the social networks are actually extremely good for the partial or somewhat distant friend. What I also believe - and this is what, is really at the heart of this piece I wrote - none of this is a replacement for the comfort of being with people
that you love. And if you are in the inner circle, if you are a close friend, there is something very powerful about uniting in a physical way, especially because most of our communication today is so virtual. (Feiler) Basically, he states that it is acceptable to use social networks for distant people in your life but not so much the close ones, especially when you are in the grieving stage. Although it does not replace the comfort of physical support, the Internet can be a great tool to help inform and update. Emotional support is probably the most important factor in recovery. Health Benefits of Emotional Support ―Humans are inherently social, and our need to connect with others only intensifies when these bonds rupture, which often happens during a health crisis‖ (Langshur). As humans, we need to have some sort of social connection. Even in the game The Sims (a virtual real-world simulation) if you go too long without talking to any other people, your avatar dies of depression. Now, that is a little extreme but it somewhat relates to real life, especially in the health care system. People who are going through medical crises not only need medical support but also need emotional support. Recent studies have proven that emotional support has positive influence to recovery. For example: In a review of the literature on patients‘ emotional and spiritual needs published in the Joint Commission‘s Journal on Quality and Safety, the authors concluded that: Poor psychological and emotional health damages physical health outcomes Conversely, emotional well-being has been shown to be predictive of survival and functional independence among older patients.
Anxiety, depression and poor outcomes are common among patients with unmet emotional needs. (Langshur)
When people go through hardships, they instinctively seek support in those they love and those who care about them. With all the health care and support online these days, it is much easier to get comfort and support when going through a tough time. There are many sites that help but two of the leading blogs for online care support are CaringBridge and CarePages. CaringBridge CaringBridge is a ―…charitable nonprofit organization offering free personalized websites to people facing a serious medical condition or hospitalization, undergoing medical treatment and/or recovering from a significant accident, illness, injury or procedure‖ (CaringBridge). The function of this site is very similar to a blog. CaringBridge allows family members, loved ones, and friends to receive constant information via the web. It eliminates the need to make and receive numerous telephone calls. Eliminating these calls are the main reason why it was invented. Sona Mehring invented CaringBridge about 13 years ago when she was asked to be the point of contact for her friends‘ high-risk pregnancy. Instead of choosing to call everyone and their mom, she made a website. This website made it possible for the couple to post daily news, updates, and photos for everyone who cared. This gave the couple time to rest and get the proper care without the interruption of phone calls. Sadly, their child ended up passing, but this website that the couple‘s friend had created became their medium to convey their heartbreaking loss without having to recall the event over and over (Kennedy 13). Today, these CaringBridge sites make it easier for patients, caregivers, families, and
friends to exchange information about the patients on an everyday basis. When people go visit these sites, they can post messages of support. This service is free, private, and available 24/7. Since the beginning of CaringBridge there has been a huge increase in users. ―During the last decade, 70,000 families have created personalized websites. The site has logged more than 400 million visits, and more than 10 million messages of support have been entered in CaringBridge guest books‖ (Kennedy). For many people today, CaringBridge has not only been a helpful tool to inform but also a way for people to get their true feelings and emotions out in the privacy of their hospital room or home. Christina Avery, mother of a 3-year-old cancer survivor states, "At the beginning, it was practicality, but then it quickly became a way for me to get emotions out. It is easier to tell people that kind of thing in writing than having to tell people on the phone — how bad you're feeling or how scary it is" (Penaloza). Overall, CaringBridge provides an electronic way to be open about your condition and then it allows the people who care about you to be responsive and supportive. ―In this electronic age, it‘s a way to be in touch and to be in support for people in personally difficult times‖ (Kennedy). CarePages Another website used to help people through their medical challenges is CarePages Incorporated. It is an online community of people who come together to share the challenges, hopes and triumphs of anyone facing medical life-changing events. What is different about CarePages and CaringBridge is CarePages also offers a variety of resources and support tools for living a more compassionate life. They provide articles and stories for those seeking information. Many people going to this site are looking to seek, give, or receive emotional support. Paul Kronenberg, president and CEO of Crouse Hospital in Syracuse, NY states: Patients want to be cared for in a setting that not only is welcoming, but also
provides them with the assurance that their needs–clinical, social, emotional and spiritual–are being met, and that they are being listened to...hospitals should work hard to ensure that the communication between the medical team and patients and their families is two-way... we have put in place a Web- based service called CarePages that allows families to communicate the status of a patient‘s condition to loved ones across the town or around the globe (Lanshur). CarePages is just another great example of how the Internet is used to connect patients and support. They call themselves a ―free website dedicated to ensuring that no one has to face a health challenge alone.‖ (6) These people who use this website are all different ethnicities, race, age, economic status, etc. Although each of these people has a unique and different health experience they have one thing in common; they all turn to the Internet to help them cope and get support. What’s next? The health care system can only get better now that many people how found an easier way to communicate and receive support. With technology expanding and our world growing, these online care sites can only do the same. Jane Sarasohn-Kahn, the author of ―In Wisdom of Patients: Healthcare Meets Online Social Media,‖ writes: …those people who choose to use social media for managing health and gaining support will find a growing array of tools and modalities – increasingly mobile ones. In the next few years, we will see countless social media projects focusing on specific diseases and sub-specialty areas, built by and for patients, caregivers, and providers (Kennedy).
If she is right, we have many things to look forward to. So many projects will be developed in order to help patients help others cope with similar situations. Overall the system of healthcare has improved now with the Internet. It is becoming an everyday thing to open your computer and be able to help support some one half way across the world, and we have these care pages to thank. What these people are doing by helping us help others is creating a gateway to love and care.
Works Cited CaringBridge: A Nonprofit Connecting Family and Friends When Health Matters Most. CaringBridge Organization, 1997. Web. 1 March. 2012. Feiler, Bruce. ―Mourning in a Digital Age‖ Fashion & Style (2012). The New York Times. Web. 4 April 2012 Kennedy, Angela. "Caringbridge: Keeping Families, Friends Connected During Medical Crises." Counseling Today 50.4 (2007): 12-45. Education Research Complete. Web. 16 Feb. 2012. Langshur, Sharon. ―Online Healthcare Gets Personal.‖ CarePages. CarePages Inc., 2008. Web. 1 March 2012. Meyer, Dick. ―Cancer and Community.‖ Against the Grain (2012). NPR. Web. 4 April 2012. Penaloza, Marisa. ―Blogging to Cope With A Daughter‘s Cancer Fight.‖ Reporters Notebook (2009) NPR. Web 5 April 2012.
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