Social Media

On Cancer: Virtual Community Provides Real Support to Patients and Caregivers

By Esther Napolitano, BS, Science Writer/Editor  |  Wednesday, January 15, 2014
Exchanging personal experiences through an online community like Connections can be a convenient and meaningful way for patients to get support. Exchanging personal experiences through an online community like Connections can be a convenient and meaningful way for patients to get support.

How do people cope with fears about a cancer recurrence? Where's the best place to have lunch near Memorial Sloan Kettering Basking Ridge? Can someone recommend a wig boutique?

These are among the hundreds of questions that have generated helpful suggestions and discussion threads on Connections, an online community that provides a secure, virtual meeting place for patients, caregivers, and others who want to connect with the Memorial Sloan Kettering community.

“Connections provides patients with a major source of reliable, health-related information and critical support, including peer-to-peer advice, which can make a huge difference in how they cope with many aspects of their cancer,” says clinical social worker Christopher Anrig. “For many individuals, this provides them with a resource that helps them overcome the physical and social limitations that may prevent them from getting the care and support that they need.”

Benefits of Connecting with Peers

Launched in 2010, Connections is one of a range of support programs that Memorial Sloan Kettering offers to help people with cancer, and their families and friends, who are interested in connecting with others in similar situations and exchanging shared experiences.

Memorial Sloan Kettering staff moderate activity on Connections and direct users to helpful resources and information available online, within Memorial Sloan Kettering, and in the cancer community.

According to research published in 2013 by the Pew Internet Project, 24 percent of Internet users in the United States say they got information or support about a health condition in the past year from others who have the same health condition.

“People relate differently to what they read and write on Connections compared to what they say in a support group because it allows them time to process information at their own rate and the flexibility to connect with others when they feel they need to,” explains Mr. Anrig. “It gives them the ability to relate to other people’s stories in a meaningful way that provides a basis for comparing their own experience, and that can be really therapeutic.”

Meeting Caregivers’ Unique Need for Support

Pew’s research also shows that caregivers go online at a high rate — in the last year, 72 percent of caregivers gathered health information online and 52 percent participated in online, health-related social activities. 

“Because caregivers are so busy caring for a loved one and often also working, they don’t have time to come to a support group, so online resources are tremendously helpful for them,” says Mr. Anrig. “Caregivers go online for everything from finding information about medications to getting the deepest kind of existential support; and avenues like Connections can help meet those needs.” 

Opportunities to Engage with Cancer Experts

Connections’ Ask the Expert feature allows community members to ask questions on a given topic that are answered by a Memorial Sloan Kettering expert at the end of each month. Experts have responded to inquiries about cancer and older patients; herbs, supplements, and nutrition; and exercise before and after cancer treatment. 

In addition, Memorial Sloan Kettering periodically partners with another online cancer community, CancerConnect, to offer live webinars on cancer-related topics featuring experts from the center. Community members can view the webinars live on Connections and submit questions in advance of the presentation. 

Participants also appreciate that the site allows them to remain anonymous. “Anonymity provides them with a sense of safety and confidentiality that they can’t have when they’re speaking with other people directly, and alleviates some of the vulnerability that represents an obstacle to sharing their experiences and getting the help they need,” Mr. Anrig says.                                        

Joining the Connections Community

Members of Connections can initiate and engage in conversations among various groups. Some groups focus discussions on topics of interest to people who are undergoing or have completed cancer treatment. Others provide a forum for certain age groups or for those interested in specific diseases or therapies. There are also groups that offer an outlet for creative expression and feedback.

Connections includes features similar to those found on some social media sites, such as the ability to like a particular post, become friends with individual users and follow their activity, and send private messages.

Visit the Connections page on Memorial Sloan Kettering’s website to learn more about the community and how to join.

Comments

Hi. I am having problems identifying what the key phrase/password is. When I enter my own, it asks me to enter something else. Please advise. Thanks!

Hi, Rebecca, we are sorry you are having trouble logging in. If you've never logged in before, here are the steps you need to take to join Connections:
•Go to www.mskcc.net.
•Click “Register Now.”
•Complete the form. Where it says “Unique Key Phrase,” please enter mskcc123.
•Click “Complete Sign Up.”

Once you've registered and logged in, you can change the password to whatever you choose.

If you have established your own password, but forgotten it, there should be a "forgot you password" option when you try to sign in. If you continue to have trouble, you may send a message to our technical support team for assistance by clicking on this link: http://mskcc.net/support

Hope this helps. Thank you for reaching out to us.

My name is Erik I have been diagnosed with rectal and lung cancer. My daughter is 15 and my son is 20 years old, we explain to them what is going on but I think they need to talk to other people that are their own age that are goiong through similar situations. Do you have a support group for young people.

Hi, Erik, we are sorry to hear about your diagnoses. Our Kids Express Program helps adults with cancer communicate with their children about their illness. It also offers private consultations with a social worker familiar with these types of situations, and support group meetings for parents and for children whose parents have cancer. For more information, call them at 212-639-7029 or go to: http://www.mskcc.org/cancer-care/counseling-support/parents. You may also be interested in this tip sheet for teens who have a parent with cancer: http://www.mskcc.org/cancer-care/patient-education/resources/teens-who-have-parent

Thanks for your comment.

I cannot access MSKCC.net same problems as Rebecca

Hi, Catherine, we are sorry you are having trouble logging in. Here is a link with instructions on how to sign up, including the "unique key phrase" it will ask you to enter when you first register: http://www.mskcc.org/cancer-care/counseling-support/connections-online-community

Hopefully this is helpful, but let us know if you continue to have difficulty. Thank you for your comment.

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