started a support group, need ideas..

[The Noob]

ok, we have been at our clinic since october 2010. we would all sit in lobby and chat and get support that way. someone had to do it..so we started a support group. son and i printed out 50 flyers, hubby took some to other patients, son and i hit every place in town we could and also paper. i made a website and email also. we dropped some off at hospital, fire/ems/police station, nursing facilities, you name it.
the only trouble we had in giving out/placing these flyers was at our clinic. huh??

anyway, our first meet is in about 2 weeks. so far everyone is supportive. was wondering if anyone had any ideas for me?

its as hot as blazes. hubby has last criteria for list tomorrow. should find out about donors any minute now.

i feel pretty good about this effort as its badly needed. i am compiling a list of some stuff to make up a newsletter. just a few pages. we did a small newspaper before and i have alot of experience running groups and writing, just not in this.
was thinking getting some green metallic ribbons for cars would go over?
any feedback would be great!
  to all of you..

[Ang]

my


for the newsletter, make it 75% about anything but the illness,jokes,diets, hobbies, etc
25% about the illness, advances in treatments,meds,clinics,news basically  etc etc

support group- play it by ear, see what the people want, could just be a get together, how ever often,

just don't talk shop.

good  luck

[jbeany]

Planning a general ESRD group, a D group or a transplant group?  Can you make a quick poll up of what those who show up are most looking for?  Financial info?  Medical info?  Treatment options?  Diet and recipe help?  Got a group name?  A mission statement?  A regular meeting place?

Not surprised about the clinic balking - lots of them throw tizzies when IHD members try to share info about our support group here.  "You don't actually believe the stuff you read on the web, do you?"     Sometimes I think they prefer everyone uninformed and too muddled to even ask questions.

[The Noob]

very good advice and i agree on all. yes on group name, meet place, after polling all for months seems like support, info on medical, and advocacy is top 3. try to make group same as in lobby. pre-D, treatments,possible transplant, options, education, many there with varied experience in all so will make group diverse.
my hope is to get this off the ground and established, delegate aspects, etc.
one of most responsive was county office. to help ems/fire and all learn about patients. bless their hearts.
in my experience, the first meet is usually small, then word gets out, new people come out later, word gets out more, more come.
the main drive for this is that there is nothing around for these folks and alot of them don't have the internet. and there is nothing like talking with them that have been there.
one thing i hear repeatedly is that D patients and family become isolated from their former support system and that so few are aware of what D really is and what has to be dealt with. it generally takes a little bit to get a group established. but we have to be in town anyway.
oh yes on making newsletter mostly light hearted with a small emphasis on other D news.   i was telling them some of the "ignorant things people have said to you" thread yesterday and they were all laughing! it was so true!
have to go to city for stress test today and will put some flyers out there too. all you can do is offer!

[Kitty Cat]

At my husband's dialysis unit, they used to have a monthly support group. They would talk about whatever somebody had on their mind, but would also bring in guest speakers, such as a nephrologist for folks to ask questions that they feel more comfortable in a group setting.

These meetings were wonderful, as mentioned, many of these folks do not have outside support so the feeling of somebody being in the same boat was awesome. Unfortunately, the social worker who set this up moved and it's never been restarted again.   

I wish you all the best with your group! Everyone will enjoy it.

[The Noob]

well, son and i handed out 50 flyers. everyone was supportive. except the local paper. guy called me rude as heck, sarcastic, asked ridiculous questions, nasty as all get out. i was dumb founded. actually had the statement at me "so what kind of an outfit are you that you want FREE publicity in our paper"..
stuff like that. then says why do i want to do this when i don't live in town? well, alot of the people don't live in town, in fact many live outside even of the county. i did my best to school him but he finally said he would not run even a small blip in community news unless he could come in and interview several people at the clinic, and they had to live in the city.

our head nurse is on vacation, so desk receptionist will not post flyer till she returns, though head nurse had no problem with our group and posting flyers, etc anything they could do to help. hubby took some flyers in today and they were gone when he came out. hopefully taken by patients/caregivers, and not the receptionist. why the resistance?
i gave alot of info on flyer and website. all about us, what we want to do, what its for, even quoted some stats. even after all this i get "what is this for?"

[okarol]

I hope you get a couple people - it doesnt take much to share experiences and get support. 

[okarol]

Here's a PDF from The Renal Network, Inc. about establishing and running a support group
http://www.therenalnetwork.org/services/resources/pdf/SupportGroup_bklt.pdf

[The Noob]

hey it won't let me open it. but thank you just the same!
i've started and ran so many support groups for so many things over the years. i know how to do it and am used to some resistance at some point from somewhere. its that everyone wanted it, i was willing to get it going, now some of them are afraid of offending the clinic? don't understand. i gave mucho accolades to the clinic and docs in flyer and website. the head nurse is on vacation but already voiced her support with enthusiasm. i am thinking the receptionist might be taking flyers off table. well i can't worry too much over it. if nothing else, i did what i could.
if it doesn't go over, well thats ok, at least i tried. at any rate my family will attend and even if no one else shows up we will enjoy a nice meal!

[okarol]

Clinics don't seem to want patients to get together. Maybe put flyers on the car windshields at the clinic?

I have copied the text from the PDF but it will lose the formatting, so hopefully you can still get something out of it.

INTRODUCTION
Definition
A support group for kidney patients, family members, caregivers and interested
individuals can be defined as a forum, where group members are provided with the
opportunity to meet regularly to discuss topics related to kidney disease, share
information and experiences, and to provide and receive support.  It also helps
group members discover they are not alone and that others have the same or
similar problems.
Purpose
The purpose of a kidney disease support group is for group members to:
Receive emotional support in a safe, welcoming environment
Share thoughts, feelings and concerns
Learn from one another’s knowledge and experience
Problem solve 
Establish friendships and gain a sense of belonging
Become educated and informed
Develop skills needed for personal growth and development
Development Planning
Participation2
DEVELOPING A KIDNEY DISEASE SUPPORT GROUP
Establishing the Support Group
Organizing and developing a kidney disease support group takes time and effort. 
The following are some issues to consider in the development of a group:
Membership - Participation is voluntary but it is important to consider and
define group membership. A kidney disease support group may be open to
all individuals who are diagnosed with or are affected by kidney disease. A
targeted kidney disease support group for new patients may be open only to
patients who have been diagnosed within the last year. Such a group could
be extended to include caregivers as well.
Location - Kidney disease support groups can meet in a variety of settings.
It is best to meet regularly in a neutral, community- based setting where
group members can be assured privacy. 
Meeting Day and Time - Group members can provide suggestions based on
their schedule. Sunday is the only day when there is not scheduled in-center
hemodialysis which makes it the preferred day for some people. Others
prefer to meet during the day or in the evening.
Meetings are usually one to two hours in length. If more time
is needed for specific individual issues, the facilitator and
interested group member can schedule a mutually acceptable
time to discuss the issues further.
Cost - There is no charge for membership.
Confidentiality - All information shared at the group meeting will be kept
private and confidential.
Leadership - Kidney support groups will be facilitated by a trained
professional and may be co-facilitated by one or two group members.
Group Size - Although group size varies from meeting to meeting, for group
members to have the greatest benefit from the group experience, it is
recommended that group size not exceed 10-12 members. If the group
becomes larger than 12 members, it is recommended that group members
and the facilitator consider dividing into two groups. 3
Group Content and Process - The focus of a kidney support group is to
provide members with emotional support, to offer members the opportunity
to discuss issues related to kidney disease, and to share thoughts and feelings
in a safe, welcoming environment. The facilitator and group members can
plan for educational programming to augment and provide balance to the
meetings.
GROUP TYPES
Groups can be targeted to:
A specific age or gender
Individuals who are coping with an illness
Family members, friends and interested individuals
Groups can be open or closed:
Open groups welcome all individuals at any time.  Individuals can
choose to attend when they have a concern and need to problem
solve, when they are in need of emotional support or to attend an
education presentation or social event.
Some of the benefits for selecting an “open group” are that
the group is designed to be inclusive, enabling new
members to share their thoughts, experiences and feelings
at a time that is convenient for them and enriching all group
members with added insight and support.
Closed groups are for only those individuals who are committed to
participating in the group and who have agreed to abide by the
group rules developed by the group leaders and group members.
Potential members may be screened to determine if they would be
appropriate for the group.
The benefit of a “closed group” is that the group is usually
smaller and more cohesive. Group members tend to be
committed to attending the meetings and to working on
goals and personal growth. 4
Marketing the Support Group
Promotion is an important factor in recruiting group members. Before promoting
your group to others, it is important to:
Create an identity by giving the group a name
Establish a mission statement (e.g., to provide support, encouragement,
education, etc.)
List the group's services (e.g., meetings, newsletter, etc.)
Select a contact person and provide contact information (e.g., telephone
number, email address, etc.)
Create a flyer or a brochure that can be easily handed out to prospective
participants. This information can also be used to make a poster or bulletin board
announcement.
To let other know about the group: 
Inform dialysis facility staff of the support group meetings and ask them to
identify and encourage appropriate patients to attend. 
Encourage word of mouth recommendations by patients committed to
attending the support group.
Promote general interest by holding an open forum or sponsoring a social
event.
Planning the Meeting
Be organized 
Prepare an agenda. This could include: main topic(s) for meeting, speakers
or discussion leaders for each topic, approximate time allotted for each
topic and information about next meeting.
Set up a table with a sign-in sheet for group members. Provide name tags
and a schedule of future support group meetings.
Display educational materials, newsletters, books, Web sites, contact
information for renal organizations, governmental agencies, The Renal
Network, Inc. and information/flyers on upcoming events.
Develop a communication system to alert group members if the meeting
needs to be canceled. 5
THE MEETINGS CAN INCLUDE:
Sign-in
Welcome/opening 
Introductions 
Review of  the agenda 
Reminder about confidentiality 
Review of group rules, such as, no crosstalk, keep discussion as one
group, provide positive feedback, no aggressive behavior (cursing,
yelling, shouting)
Topic discussion by invited guest or facilitator 
Members open discussion and sharing related to the specific topic
Summary of key discussion points 
Plan for the next meeting 
Closing 
Group Process
The success of the support group relies on each member of the group
understanding the support group process and committing to:
a. Promote individual participation
b. Maintain a balance of power and influence 
c. Respect each viewpoint as valuable 
d. Manage differences and avoid conflict   
A support group is meant to:
a. Create a secure, non-judgmental environment
b. Focus on sharing thoughts and feelings
c. Provide support, encouragement and motivation
d. Help each group member to move beyond their current situation to adjust to
life as it has changed.
A support group is not meant to:
a. Substitute health care services
b. Be a gripe or gossip session 
c. Be an encounter group or therapy session     
The following table outlines some of the obstacles which may threaten to limit the
success of the support group.  For each barrier to participation identified, some
possible solutions are suggested. 6
It is important to remember that problems may occur at any time. A sudden change
in group dynamics or a change in a member’s schedule may precipitate a sudden
rash of issues.  Facilitators must be prepared to identify problems and help the
group brainstorm solutions at any time in the support group’s lifespan.
Barriers to Group Participation Ways to Promote Group Participation
Lack of commitment/readiness Design meetings to:
a. Provide information on relevant topics to
members; address member needs and
interests first
b. Plan creative and fun ways to explore topics
(e.g. have a cook off contest as part of a
nutrition talk)
c. Create an informal and social atmosphere
by placing chairs in a circle or around a
table
d. Offer kidney-friendly refreshments
Transportation a. Choose locations on a bus route
b. Hold meetings at the dialysis center
c. Schedule meetings before or after treatment
d. Encourage car pooling
Scheduling issues a. Have the group meet on Sundays to avoid
scheduling conflicts
b. Alternate days and time of meetings to
accommodate different shifts.
c. Offer more than one groups session
Location Consider other locations close to the majority of
the group members such as the dialysis center,
library or church.
Confidentiality concerns a. Have group members sign a confidentiality
statement.
b. Facilitators address this issue and remind
group members that everything that is said
at the meeting stays at the meeting.
c. Allow trust to develop over time.7
Inability to communicate a. Facilitators use group leadership and
clinical skills.
b. With participants reluctant to disclose, help
with group processing and building group
cohesiveness.
Stigma, labeling Facilitators address this issue in the group with
questions, such as, “How do you feel about
coming to the group?”  “Is your family
supportive?”
Group is not meeting individual or
group needs
a. Facilitators discuss with the group members
their goals for meetings, topics for
discussion, individual needs and the group
purpose. 
b. Redefine goals as needed
c. Provide opportunity for anonymous
feedback
d. Refer group members to appropriate
resources.
Evaluations
Group members, either through informal discussion or by participating in a needs
survey, can provide input to determine:
Has the group experience been beneficial?
What has been helpful; what can make the group more effective?
Is there a need for education or resources on specific topics? 
Has the time, schedule and location been suitable?
Ending the Group
If, for any reason, the group has to end, the facilitator needs
to work together with group members to bring closure by
addressing unresolved issues, offering a list of resources,
and, if appropriate, providing assistance in transitioning
group members to another group. 8
Expected Outcomes
Over the years, support groups have proven to be a successful intervention to help
patients cope with a new or existing diagnosis. Support groups have helped
patients to: 
Learn more about CKD and how to manage kidney disease
Adjust to lifestyle changes 
Stay physically active and socially engaged
Understand that other patients share the same challenges and have
successfully overcome them
Become more engaged in their treatment 
Family members and caregivers are also affected by the support group process.
Directly or indirectly, family members and caregivers gain knowledge,
implemented problem solving techniques, receive support, and gain strength in
knowing that they are not alone. 
Testimonial “I am not sure I could have achieved as much as
I have with my own nutritional therapy without the support
group at John Hopkins.  A support group can make the
difference.” 
Ahlstrom, Timothy P. The Kidney Patient's Book: New
Treatment, New Hope, page 256. Delran, New Jersey:
Great Issues Press, 1991.  9
RESOURCES
Suggestions for Group Topics
Quality of Life Issues
Accepting and adjusting to the CKD
diagnosis
Learning, problem solving, dealing
with the disease
Fitting exercise in your daily routine
Stress management
Family relationships
Sex and intimacy
Spirituality
Work issues
Vocational Rehabilitation
Treatment Choices
Dialysis – In-center hemodialysis,
home hemodialysis, peritoneal,
NxStage
Making the choice for access --
fistula, graft, catheter
The benefits of fistulas
Transplantation – Donor choices,
medications, rejection, insurance
coverage
Care and Treatment
Medications
Lab reports and lab values
Side effects – Leg cramps, shortness
of breath, restless leg syndrome
Living with CKD and heart disease,
diabetes, bone disease or other
chronic illnesses
End of Life Care
Advance Directives: Preparing for
the future.
Durable Power of Attorney for
Health Care, Living Wills, Do Not
Resuscitate Orders
Choosing palliative care or Hospice
Food and Liquid Choices to Remain
Healthy
The Kidney Diet: Recipes and hints
to manage your food intake
Coping with fluid restrictions
Psycho/Social and Addiction Problems
Alcohol/drug addiction
Mental Health Diagnoses
Depression related to living with
CKD
Coping during the holidays and
special family life events
Financial Issues
Medicare, Medicaid, SSI
Insurance coverage
Community Resources
Social Service Agencies
Food Programs, Transportation,
Housing
The State Board of Health
The Renal Network, Inc.10
Articles
Fadem,  Stephen Z. A Nephrologist as a Cancer Patient Finds Enlightenment in a
Support Group http://www.ikidney.com/article.php?id=20080118210158 
Spiegel, David, et al.  Effect of Psychosocial treatment on survival of patients with
metastatic breast cancer. Lancet. 14.2 ( 8668):888-891, 1989
Zarit, Steven H. et al. Working with Families of Dementia Victims: A Treatment
Manual, Los Angeles, UCLA/USC Long-term Care Gerontology Center, 1983
Renal Outreach
The Renal Network patient newsletter contains articles on patient advocacy groups.   
Starting a Patient Group is a short article focusing on the benefits of patient
groups. http://www.therenalnetwork.org/resources/resources/RO14_3.pdf     
Patient Advocacy Groups: They Really Do Work provides examples of how
patients’ attitudes and behavior can change when they feel they matter and they are
part of something important.   
http://www.therenalnetwork.org/resources/resources/RO14_3.pdf
Our Support Group at HDD describes a facility support group’s goal to educate,
promote good health and celebrate life.
http://www.therenalnetwork.org/resources/resources/RO17_2.pdf     
Helpful Web Sites
American Self-Help Clearinghouse   
This site houses a database with links to over 1,100 national and international
online self-help support groups. 800-367-6274                     
www.selfhelpgroups.org/   
HOPEline 
This Renal Support Network (RSN) program offers the opportunity for kidney
patients and family members to have direct contact with a caring and
knowledgeable patient who can share his/her experiences and offer hope. 800-579-
1970
http://www.rsnhope.org/programs/HopeLine.php11
On-Line Support Groups and Discussions   
Life Options provides links for dialysis and transplant groups and for groups that
focus on many topics that relate to chronic kidney disease. 800-468-7777
http://www.lifeoptions.org/links/links.php?sect=11 
The Self-Help Resource Center of Greater Toronto 
The goal of the center is to provide self-help, increase awareness of community
self-help groups and to facilitate the growth and development of self-help groups,
networks and resources. The center website has a resource link called How to Start
and Maintain a Self Help Group, which is translated into five languages. 888-283-
8806 (Ontario)
http://www.selfhelp.on.ca  The Renal Network, Inc.
ESRD Network 9/10
911 E. 86
th
Street, Suite 202
Indianapolis, IN 46240-1858
Phone: 317.257.8265
Fax: 317.257.8291
Patient line: 1-800-456-6919
Email at: info@nw10.esrd.net
Web sites:
www.therenalnetwork.org
www.kidneypatientnews.org
Published under CMS contracts
HHSM-500-2006-NW 009C
& HHSM-500-2006-NW 010C

[The Noob]

hey thanks! and yes to all, its done. the things the patients/caregivers don't want is another nurse or what have you heading the group. they were very specific on this. their reasons were they already had enough "authority" types over them controlling and dictating to them.
we all agreed on the locale of the first meeting as its close by, cheap, friendly, no barriers, big bathrooms and they said we could use their separate meeting room at no extra charge. this is a preliminary meeting to discuss alternates for same.
i think your right in that the clinic may be resistant (at least until the head nurse gets back). one of the members who was gung ho is now worrying about us offending the clinic by starting this group, fears they may be asked to leave clinic???
i don't understand, but then again i do. the head nurse i ran all this by is very supportive. says she will print and distribute flyers for us, offer any freebies, etc.
we'll see if its the same when she gets back.
my husband says when i go to clinic, everyone talks and laughs and has a good time. we all hug and provide much support to each other, and many tell me they miss me when i am not there as i make them laugh and feel like someone cares about them.
hubby says when i am not there, everyone sits silent in the lobby and looks very depressed.
i know we get some "looks" from the receptionist and she'd probably wish i wasn't there because then everyone sits like good little inmates doing what their told.
i am not a loud mouth, trouble maker, or any of that nonsense. i've studied my interactions at the clinic over all this time. i bring in hot cocoa for one of my buddies and greet everyone coming and going, talk to them, hold their hand. some i have sat with long times explaining the process they are new to. now this one i got some vibes on from the staff because they basically handed this family a stack of papers and an internet address. the family does not have a computer or internet. i wasn't going into advanced medical explanations. we were talking (and i was listening) about the emotional side of it all. this is where the clinic has failed.

many of them discuss with me changes they'd like to see for patients as well as caregivers. they repeat them over and over. i feel for them. they know this and that i will advocate for them in a polite manner. and i have.
they would prefer i think to shelter in place, with me doing the battles.
hey thats ok, i can take it.

edit to add: several months ago hubby and i were at clinic maybe 10 mins, i was getting ready to leave as he had already gone back. nurse comes out, tells me i have to take him to hospital, his av access is plugged.
that was the one and only meltdown i ever had through all this, and i let them have it. no cussin, no blaming, just crying and ranting about the whole process. they were in tears too when i left.
i drove hubby to hospital for 19 hours of waiting (another story) for a 10 min procedure to replace his catheter.

i took a break from the clinic for a month. told he had to drive himself. when i returned, no one said a word to me. not for a few days. then the head nurse came in, held my hand, apologized for anything they hadn't done to help me, lack of support, etc. it was then she and i agreed there needed to be a support group. that was 4 months ago.

in the beginning of all this, even with medical training, we still knew so little about dialysis. i was terrified alot. and he was awful sick and back in forth in hospital. finally one day the nasty doc we had then, came in yelling at me.
i yelled back. nurses came running to see what was up. BUT i stood my ground and later we switched all of it somewhere else.

what is this mentality of "sit down shut up do as your told don't question"

if i had not been on my watch, my hubby may not be here today. i have caught many serious mistakes, and still have to watch. i try to be polite and firm. i have no problem being assertive.
maybe that makes some uncomfortable. i don't care. my husbands health is my top priority.
so there!
(thanks for letting me rant)

[peleroja]

My friend and I run a support group in Southern California.  We have a sign in, snacks, and usually a go round of how folks are doing and whatever questions they may have.  I have handouts, mostly from the internet.  If you're interested in the handouts, IM me and provide your email and I will email them to you.  Occasionally we have had speakers such as nephs, wound care doctors, dentists, etc.  Best of luck with your group!

[okarol]

  I was hoping you'd post peleroja - I know you've done a great job with your group!

The Noob - you sound like a natural leader - please let us know how it's going! 

[The Noob]

  thank you!