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« on: July 30, 2009, 02:53:18 PM »

Hello:  My partner (in need of a kidney transplant) and I are about to launch an informal support group for individuals in need of a donor kidney, those waiting for transplant, persons on dialysis, predialysis persons, post transplant individuals and all support persons.  (Have I forgotten anyone?).  Our one concern is that those on dialysis would not be the choice of those who attend dialysis clinic several times a week --- they would not want to leave the comforts of their homes and expend precious energy to attend a group that focuses on their hardships.
     We are new to these topics and surprised that a group does not exist. Perhaps issues in the above para. are the rationale behind the fact that there is not already a group peer support?  What is your experience?
     Beside having professionals attend as keynote speakers we intend to establish some "social" events among the group meeting agendas.
     Additionally, there will be a focus on donor awareness.
     If you have any suggestions we would enjoy hearing from you.
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #1 on: July 30, 2009, 03:28:47 PM »

Yes, I think you hit the nail on the head with your comments about the possible problems.  I know personally that even if there is a support group thing happening locally, I'm unlikely to want to 'use up' some of my day going to it.  Going to anything is a big effort and I try to save my energy for the little bit of work I do and social things.  IHD is perfect as a support group for me because I can do it from home, and when I want.  I would probably suggest you start with something simple like a lunch, and see how it develops.  It's wonderful that you want to help other people in your area.

Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
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« Reply #2 on: July 31, 2009, 04:35:17 AM »

During my training as a social worker in a hospital here in Toronto, I facilitated an ESRD support group in which the goal was for the facilitator role to eventually be passed over to the members in some fashion.  It was a successful group but not quite in the way we had envisaged it.  Those who found it most useful were those new to the whole business and for this reason they were not usually in a very good position to lead the group as there was much technical stuff that they still didn't understand.  It did not turn into an ongoing group but was well attended during the 4 months of its existence.
We had better success I think with a peer support program set up by the patient services committee of the Kidney Foundation.  We matched individuals with other individuals who shared similar situations...so parent of patient with another parent. teenager with teenager etc and we provided some training to these peer supporters about issues like clinical depression and so on.
The support group idea tends to be the most successful if it takes place in a location that the patients are at anyway (clinic for example) so an extra trip out is not required.
Good luck with this and I can certainly attest to the benefits for patients of a well-run patient centered group.

Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #3 on: July 31, 2009, 10:17:44 AM »

Don't know if you saw it, but this is what I posted on your other request for info about a support group:

"When  AAKP dissolved all its "chapters" last year, my friend and I were determined to keep our group going.  We paid to have a formal partnership drawn up so we could open a checking account.  We published the name (Kidney Beings Renal Support Group), and continued having our regular meetings.  When we meet folks talk about problems, goals, ask questions, etc.  Sometimes we have speakers (nephrologist, renal dietician, social worker, etc.).  We serve renal friendly snacks.  I'm not sure how formal you're intending your group to be."

We have a core group of folks who come to nearly every meeting, both PD and hemo, and a few transplantees.  We also have folks newly diagnosed and new to dialysis.  It has become like a large family.  We care about one another and publish a list of phone numbers and emails so folks can keep in touch, ask questions and get support.

Your idea of a support group is wonderful.  We need thousands more support groups.  Doctors and nurses only know book learning.  We, the patients, have been there, done that for years.  Feel free to IM me for any further info.  Good luck on your project!
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