How to start a support group?

[Des]

I would like to start a support group at our unit.

I have noticed all the people are really "glum" and sad. I have two youngsters (18,14) in the group as well. The lady next door are just eating what she wants and never received any info on the importance of diet. I have a few that just shortens their time with an hour or  they just stay away.

I think a support group should not take too much time away from the families it should include the families and it should at first be social meetings, what do you think?

Do you go to a support group except IHD?
Do you think I should try?

The techs have already said that since I came the unit are somehow livelier and louder. heheheh but that is not enough.   

Any advise should help.

[Jean]

Des, I think that is one wonderful idea. Go for it. You bring sunshine to so many lives here, why not spread it around to more people.

[MooseMom]

Our local hospital puts out a monthly magazine, and on the back page, there is a list of all the support groups in the area.  There are loads of them, but not a single one for renal patients.  Cancer, yes.  Alcoholism, yes.  Huntington's, yes.  Nasty teenagers, yes.  Recently divorced, yes.  Breastfeeding, yes.  Bereavement, yes.  Stillbirth, yes.  Mental health, yes.  Asthma, yes.  Cardiac problems, yes.  CKD/dialysis, a great big NOPE.  I think that's very odd, especially since there is a dialysis center right there on the hospital's own campus.  So yes, you should try to start one.  Not everyone has access to IHD and would appreciate real human beings.

[alohacandy]

I say go for it as well.  It's always a challenge to find the "perfect" day and time for the group.  I find that a combination of education, food and support is the best.  A positive approach is key and you are to be commended for your spirit. 

[peleroja]

My friend and I run the Kidney Beings Renal Support Group here in SoCal.  Find a place, date and time, print up some flyers and give them out.    Have handouts (I have about 30 of them and will be happy to email you the list and you can pick and choose what you want me to send you).  Have some renal friendly snacks.  Expect the first few meetings to be less well attended than you had hoped.  If you are doing this solely for hemo patients, you may either want to vary the days or pick only Sunday when nobody dialyzes.  Do it again and again and pretty soon you will have bunches of people showing up (we just met on Saturday and had 16 people there).  I personally believe we need many more support groups.

[cariad]

What an exciting way to channel your energies into something positive for yourself and others through an otherwise hideous experience. Yes, you should give it a go, absolutely. I would talk to patients individually at your unit, to see who might be interested, and get an idea what they would like to get out of a support group.

 

[murf]

As a suggestion and if you have the time, what about a regular monthly newsletter with contributions from nurses, dietitians, patients and maybe even doctors. It could cover social tidbits such as birthdays, it could talk about health issues and maybe a section for recent transplants and bereavements. I know that I would look forward to such a publication at my center.

[okarol]

The one here was just started a few months ago and attendance is still light. It's on Sundays from 2:00 to 3:30 and hopefully more will attend as word spreads. Snacks are provided. Good luck!

[Des]

Well that dream was shortlived. The head of our unit just phone me and told me that I am allowed to have a support group but not allowed to contact or ask anybody in my unit to join or send out a newsletter to them or advertise in the unit at all as I am not a registered medical professional. I must start a support group on the net or somewhere else.   huh?!!!!!

I understand that they have some obligation of privacy to the people in the unit and I wouldn't want to be bothered by any Tom,Dick and Harry pushing crap on me while I am helplessly attached to a machine (talking about captive audience)
But surely this is helpful? And I will only be pushing once... when I hand out something to mention the support group?
So now I will have to wait in the parking lot to "catch" them before they go home and I will use some cloak and dagger stuff to get this thing running. heheheh

All jokes aside so what the heck now?

[alohacandy]

Do you have a social worker at your unit who will be the liaison and help you put out the flyers, get speakers or whatever?  At our clinic I bring in the speakers and put out the flyers for the support group (I'm the Social Worker) and when my patients wanted to do a Christmas Party at the clinic, I printed out flyers, sign up sheets, etc. but they did all the organizing, preparing of food, entertaining, planning, etc.  Just last week, 2 of them asked me about starting a golfing group on Sundays (once a month), so I put out flyers and posters and so far we have 8 signed up and my 2 that wanted to start the group are going to let me know when they have the first golf game because I volunteered to drive a golf cart and drink beer        (Can you tell that I'm DEFINITELY not a golfer?)

[Des]

As this is a private "Frisenius" unit they don't have a social worker as everyone has to pay for their treatment or go somewhere else.

They are very high on liablity and they say that if a newsletter gets handed out in their unit they are scared that it will be associated with the unit. If advise given on the newsletter is crap and someone follows it, they might die and sue Frisenius. Like tips on diet and such.

So I can only send out "pre-authorized" booklets checked by their head office.

[alohacandy]

Is there a Kidney Foundation that would sponsor your support group away from the clinic?  Or would the hospital clinic be willing to start one and do they have a social worker you could talk to about this?  Or maybe a community health clinic?  And would your clinic allow flyers from that Foundation or Hospital  or Health Clinic to put out flyers inviting people to their support groups?  That way it would just be information about the meeting, not an endorsement.  There could even be a small statement at the bottom of the flyer stating that the group is not affiliated with the clinic or Fresenius Medical Care in any way. 
Fresenius DOES have some very good Patient Newsletters but it's too bad that they are so threatened about liability issues.  It's a big concern here in the United States....not sure how it is in other countries. 

[Des]

BRILLIANT IDEA ABOUT THE KIDNEY FOUNDATION!

I am on it.

will keep you posted.

[alohacandy]

Please do!!!! 

<I knew this old Social Work brain would be good for something around here!   

 

[Quickfeet]

As this is a private "Frisenius" unit they don't have a social worker as everyone has to pay for their treatment or go somewhere else

I go to Fresenius and my unit has a social worker.

[Des]

I am from South Africa in Kempton Park and we do not have a social worker.

[peleroja]

What about putting flyers out in other units?  Some cities have health fairs for free.  Any possibility of joining in?  Some supermarkets here in the states allow you to post flyers.  Any possibility for that?  I'll keep thinking!

[Des]

Please do... I need all the help I can get.

I am talking to the South Africa renal care ass. to see if they will let me do this under their "name" then I will be allowed to. But it is still in the planning stage.

D

[alohacandy]

With all of our brainpower getting dusted off and working together to help you with ideas..... plus I found my misplaced magic wand under my mound of paperwork...I think you'll get that support group going in no time!
  

[okarol]

This is from the American Association of Kidney Patients. There might be some useful tips here:

Support Group Guidebook

There are many benefits associated with developing and participating in a patient support group. A few are highlighted here:

    * Support groups provide a place to share common concerns and issues. Individuals who are going through similar experiences can provide encouragement and support to others in the group. 
    * Support groups provide valuable information. Through participation in support groups, people can take an active role in managing their kidney disease through increasing their knowledge of the latest treatments and techniques.
    * Support groups teach coping skills. The information and advice that groups provide can help participants cope with the effects of kidney disease. 
    * Support groups provide emotional support and reduce feelings of aloneness. People tend to feel alone, overwhelmed, and may not know where to turn for information.

If you are interested in developing a patient support group in your community, AAKP's Support Group Guidebook provides support groups and their members with enough information and guidance to develop, run and maintain a successful patient support group.

PDF available for download here: http://www.aakp.org/outreach/development/guide/

[Lillupie]

hi Des,
 First of all I still want to want to thank you. It was a while ago, but you filled out the questionaire to help me with my book on kidney failue.

 I too am starting a kidney dialysis support group. That totally sucks that you cant start a group. That is really what patients need. I posted it all over Facebook about my group. Maybe writing a letter to your center and stating that the groups is completely volunteers only and noone is obligated to go.


Good luck, I wish there was more I could do,
Lisa