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8612Re: [cp] Summarize: About guidelines for moderators at cancer self care groups

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  • Matt Moore
    Nov 29, 2010
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      Abelone,

      As mentioned before, you might want to try the e-mint group: http://tech.groups.yahoo.com/group/e-mint/

      I know that some of the participants of that list are working with online cancer-related communities.

      I also have an acquaintance at Cancer Council Australia who may have some thoughts on this. Happy to forward on your request if you like.

      Regards,

      Matt


      From: Abelone Glahn <ag@...>
      To: com-prac@yahoogroups.com; Kaye Vivian <viviak@...>
      Sent: Tue, 30 November, 2010 12:53:41 AM
      Subject: [cp] Summarize: About guidelines for moderators at cancer self care groups

       

      I have now had the first session with moderators of cancer self care groups,
      and had through this network a very fine helping hand from Kaye Vivian, New
      York.
      She offered me guidelines for new and inexperienced moderators, guidelines I
      to some extent could use, rewriting for the specific group.

      I would like to add, that guidelines for people stuck by life threatening
      diseases should contain something about
      - Anonymity and the use of pseudonyms ( on one hand they would like to be
      identifiable, but on the other hand they would like to be anonymous)
      - the use of photos or other graphics to identify (same dilemma)
      - what to do when someone in the community leaves without explanation (
      someone might leave because he/she has been cured/survived, but when leaving
      without explanation the community might believe he or she died and get
      discouraged)
      - what to do when someone in the community dies ( what about relatives, who
      knows that a support group has been helpful but cannot access the community?
      What to do - or not do! - in memorizing a member. What is appropriate, and
      what is the most encouraging step to take - talking about survivors or
      talking about dead members?

      Interesting dilemmas with no easy answers.

      Best regards
      Abelone

      --
      Abelone Glahn
      mob: 2425 4852
      www.abeloneglahn.dk

      -----Oprindelig meddelelse-----
      Fra: com-prac@yahoogroups.com [mailto:com-prac@yahoogroups.com] På vegne af
      Abelone
      Sendt: 17. november 2010 07:07
      Til: com-prac@yahoogroups.com
      Emne: [cp] Looking for guidelines for moderators at cancer self care groups

      Hi everybody

      I am looking for guidelines for moderators of communities for cancer
      patients or moderators of other groups of people struck by life threathening
      illnesses.

      I am helping an organisation to build guidelines for their moderators who
      all of them are cancer patients themselves.
      Some of the dilemmas are
      - how visible should the moderator be without dominating
      - good ideas to pull or push information ore other sort of inputs to enhance
      the conversation
      - how do you handle people who only want to tell about themselves all the
      time, not listening
      - how do you get activities into groups with patients with a very rare
      diagnosis (not enough critical mass to have good discussions)
      - Boundaries between talk an counselling - how to avoid being expert at the
      same time as patient your self
      - how do you build trust when you don't meet physically.

      I have looked in older postings, and found interesting things on trust
      building, but I still need some help on moderation self caring groups.

      best regards
      Abelone Glahn
      Denmark

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