• Have you seen this survey about online social communities and internet usage as it pertains to support after a cancer diagnosis?

    Asked by GregP_WN on Thursday, July 24, 2014

    Have you seen this survey about online social communities and internet usage as it pertains to support after a cancer diagnosis?

    @Ejourneys came across it and posted it, I will share it for her, here is the link to the survey>>https://www.surveygizmo.com/s3/1707941/cancersurvivorstudy It is a fairly long survey, but it's simple. They are studying the usage and benefits of online support sites like WhatNext and others, interestingly, they don't have us or any of the larger online sites listed. If you take the survey please write in WhatNext.com as a source of online support that you use.

    Thanks for supporting WhatNext!

    5 Answers from the Community

    5 answers
    • Jalemans' Avatar
      Jalemans

      With my cancer type there are no support groups because there are so few people. I feel like this group IS my support group!

      over 7 years ago
    • GiGiJudy's Avatar
      GiGiJudy

      There doesn't seem to be any support groups for people with bladder cancer who have had bladder removed and have a urostomy. Would be nice as sometimes I feel very alone.

      over 7 years ago
    • meyati's Avatar
      meyati

      It looks similar to one that I took-it lasted almost 4 months every 6 weeks or so, I got a lengthy section every 6 weeks. Whatnext wasn't listed then. I was actually contacted by ACS-with them wanting to know about Whatnext.

      One thing I complained about in survey that I did last year is that ACS has poor communication. To me it looks like the local office, at least, has someone that collects a pay check, possibly health insurance, ACS pays rent, utilities, probably goes to paid conferences, and this person and this office refers you back to the national office.

      Apparently somebody at Whatnext, went over the online cancer listings, and I received an Email from Whatnext asking me to visit the site. The invite didn't have any name on it. Whatnext was exactly what I was looking for. I can move around the site without needing to log in on a separate site. Here I don't have to log again in to ask a question. I don't have to log in again to list or up date my history. I found the ACS site so bad that when I tried to access one of the affiliate sites, ACS but a block and I had an error message that ACS didn't approve of that site. I complained, I guess a lot of other people complained or they got the contract worked out. Now you can go from one site to the other without being blocked.

      Another thing at Whatnext, I'm free to talk to people with different types of cancer. Then I'm making friends with different people. On the ACS, it just didn't seem to work that way. I didn't know that I was supposed to go around the cancer clinic and get everybody's name so I could look them up on the ACS sites. Another thing is that we can be off topic here. We can talk about music, dogs, vdeos, lost socks.

      over 7 years ago
    • meyati's Avatar
      meyati

      They do ask for your income. You probably can skip it and just click submit. I did skip some questions, where they were inane to me, or didn't have appropriate answers.

      What I didn't like was that they lumped doctors, nurses, nurse navigators, technicians, and counselors together in one group, and they lump together oncology staffs with all types of medical practices.

      I listed Whatnext where ever I could, as the main social media where I get information, support, make friends, follow cancer care of others, etc. Thank you all of being supportive of me, even if it is a like and comment about my running poem I wrote about my lost sock.

      over 7 years ago
    • kalindria's Avatar
      kalindria

      OMG, that was a LONG survey...

      over 7 years ago

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