establishing a local cholangiocarcinoma support group

Presented by:
Mark Stephens
Patient Advocate
Cholangiocarcinoma Foundation

Topics


Definition of a local support group

  •  What a local support group is:
    • A place which offers patients in a similar situation a “hands on” level of support not available through email and discussion boards
    • Real time discussion of treatments, side effects and psychosocial issues with people sharing a similar clinical experience
    • A secure place where patients and caregivers can vent and discuss issues with others
  • What a local support group is not:
    • A substitution for expert medical care
    • (Alternative therapies discussed, some people very adamant about these – always discuss with your medical team)
    • A place to persuade others to do things “your way”
    • Something to take the place of advocacy organizations like Cholangiocarcinoma foundation, CanLiv, Patient Advocate Foundation, ACS, etc.
    • It is not a forum to proselytize to others

Why a local support group?

  • A local support group offers patients in a similar situation a human touch level of support
  • A support group offers emotional support to both patients and caregivers

Who to enlist to help?

  • Your Medical Team:
    • Physician: Enlist their support. Explain why you want to do this. You want their verbal or written (email) recommendation to talk to other staff, e.g., Social Workers, Support Staff
    • Nurses and Mid---level Practitioners: Second tier if physician does not show interest

  • Social Workers are the key to making this happen
    • Most large medical centers have 1 or more social workers available to cancer patients. Once you garner the physician’s support, approach the social worker
      • They may be leading multiple support groups
      • Be consciences of their time, especially outside regular work hours
      • Be prepared to assist; Offer to co---facilitate and do the leg work

  • Support Staff
    • Larger teaching hospitals may have Patient Advocates who can assist with copying flyers, communicating

How to recruit?

  • Your physician’s staff or department social worker should have email contacts for all relevant patients
    • If they cannot provide them to you (they will need to get permission first – HIPAA– then you draft the emails and the staff can send them out to patients
      • Blind copy all addresses and send to staff or self

Logistics – where & when to meet?

  • Find a neutral place, preferably at a local medical center
    • Check with Patient Advocate or Social Worker at hospital if there is a conference room you can use
    • If no space at a hospital is available, look at local restaurants which can provide a partitioned room
      • Keep in mind it should not be any exotic food, nor should you attempt to meet in the middle of the restaurant where others can eavesdrop
      • Check it out in advance for significant food odors, being mindful of those in the middle of therapy

  • If in a conference room, determine if refreshments are allowed
    • If so, ask social worker or staff if there is a fund to purchase bottled water, coffee, soda or donuts
    • Avoid high olfactory foods and hot foods
    • Determine if aXendees can bring their own food but set ground rules in your email communication
    • Don’t forget napkins, cups, utensils, sugar, sugar substitute, creamer, etc.
  • Be consistent
    • Secure the same place, day of month and time for each meeting
    • Once a month is usually sufficient considering patient’s therapy and social worker’s time
    • Lunchtime or early evening work best
    • Teleconference capabilities for those unable to make it to meeting

  • Check out conference room ahead of time
    • Are the any special considerations about the room?
      • Are there enough chairs?
      • If you were to need more, who would you contact to get them?
    • Is it easy to find?
      • Include directions in your email and on notices – don’t assume everyone knows their way around the center as they may becoming from other facilities
    • Bring some Kleenex®

Getting the word out

    • Email works best as it is instantaneous and offers for easy responses. Telephone is not good as some view it as too intrusive
    • Print off 8.5” X 11” flyers which promote the meeting and include date, time, location and who to contact if there are questions
    • Example Flyer

Where to post flyers

  • Ask for permission to post around the medical center in areas that CCA patients visit:
    • Exam rooms
    • Laboratories and draw stations
    • Chemo suites
    • Social Workers office
    • Dietitians office
    • Nurse’s station

Contacting others

  • Call other surrounding hospitals and ask to speak to Patient Advocates or Social Workers
    • Let them know of your group and that it is open to all patients, not just those from a particular medical center
    • Secure their email addresses and permission to send them invites
    • Ask if they know of anyone else who should be on the distribution list
    • Ask them to forward to their patients
  • Use Google to search for other facilities in the area which have cancer centers
    • Email followed up by a phone call is best way to contact other centers
  • Don’t forget to reach out to:
    • American Cancer Society local chapters
    • Cancer Coalitions
    • Liver Cancer groups
    • Cholangiocarcinoma Foundation

Really getting the word out

  • Put a notice on the discussion board on the Cholangiocarcinoma Foundation Website Discussion Boards > Cholangiocarcinoma Foundation >
  • Events
  • Notify Mark at Cholangiocarcinoma Patient Blog and he will post a notice on website (http://cholangiocarcinoma.wordpress.com/)
  • See if the cancer center you’re holding the support group at has a web based bulletin board to post a notice on

Notice of meeting

  • Send out email notice of first meeting 2 – 3 weeks in advance
  • Send out reminder email 1 week in advance of each meeting
  • “Blind copy” all addressees and send to your self or to social worker to protect privacy
  • Write all information in body of the email and avoid attachments which may prevent the email from reaching your audience

Day of event

    • At the introductory meeting and whenever you have new members join the group, it is always a good idea to go over some ground rules:
      • This is a forum for open discussion
      • Everyone should show respect for diverging opinions and beliefs
      • This is not a forum for proselytizing, persuading others of “better” treatment options or judging others
      • Cell phones and Blackberry's off
    • Keep it light at first!
    • Everyone should feel comfortable sharing as much or as liXle of their “story” as they want to
    • Ask for feedback – what the members of the group want to hear about, if they want guest speakers:
      • For example: Nutritionist, patient advocate, social work team (to explain services available)

After the event

  • Follow up via email
  • Ask for suggestions of what you and the social worker can do differently
    • Be cautious of too many divergent requests for location, food, etc.

Summary

  • There are many resources available to help you set up a support group
  • Be persistent
  • Be patient too
  • Have some fun with this

 

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cholangiocarcinoma, or bile-duct (bile duct) cancer, arises from the tissues in the bile duct.