I have only been on dialysis for a year now and have wondered many times if there are support groups that are offered in other areas of the country. Unfortunately, there are not any in my area at this time, although I have thought about starting one on many occasions. I think a support group could really be beneficial in sharing different information on kidney disease and the different things available.
For instance, I didn’t know anything really about dialysis, home dialysis, buttonholing and so forth. This could be valuable information to other patients as well if they only knew about it and that the information was available.
Do you belong or would you join a local support group in your area if one was available?
All our dialysis, transplant and pre-ESRD services are under the same renal organization. This includes a number of social workers who, among other things, take turns running 7-week support groups every month or two. I often attend these. Out of hundreds of patients in the system in this city and region, they are often lucky to have 3 show up at the meetings. In winter, people stay home because it’s too cold, or it snowed, or it might snow. In summer, people stay home because it’s too nice to go to a support group meeting, or if it’s not nice, they don’t come because it’s raining, or whatever. I think support groups are valuable resources, personally, but few people seem to think so.
Pierre
I think support groups are valuable resources, personally, but few people seem to think so.
Thanks Pierre for the response. I had wondered what the turn out would be for something like that and I can understand fully the reasons you listed for people to miss a group meeting, but I, like you, think a support group would be a good way to share different aspects of our disease with each other.
It has been the same situation where I have lived and dialyzed. Most of the patients will not attend. Once we did get a support group going and it was successful for a time. We got the nephs and other professionals to teach on a subject each meeting once a month and we had catored meals provided free by a pharmaceutical company. One meeting the whole room was full and patients and family members asked questions after the presentation.
I believe the main thing that prevents support groups from succeeding is the lack of education IN the unit. Our neph told me that the meetings were a good thing, but more patients would not come as they were too uneducated. I told the neph not to look at numbers, but if he wanted more numbers than he and the staff must educate IN the unit at the teachable moment. He just laughed as he had the attitude that most patients don’t want and can’t handle education. I believe this is a very wrong attitude on behalf of the neph and staff. Without education on an ongoing basis, patients become dependent.
After the support group folded, the neph came to me and asked me to please keep it going -it had been a good thing. I had to tell him I would not, for without education IN the unit, I had nothing to work with.
I consider this site to be a patient support group. It is the next best thing to having a group in person.
At NKC we have bi-monthly support group meetings, which I don’t get to and quarterly cooking classes which I have been to and I try to organize a social gathering a couple times a year. My impression is that the cooking class attracts more dialyzors than the support group.
Personally I like online support … for instance posting here or posting to the Dialysis_Support listserv. Just reading the posts is supportive because it gives me perspective but I understand the value of getting together in person.
I just last week reserved the Mercer Island Community Center for Sunday August 6th. I hope that bar-b-q and door prizes will get 200 dialyzors and their families to show up. I’ve been hosting summer picnics and winter holiday parties pretty regularly for the last 8 years – last year was the first year I didn’t organize something, well except the Expo. Usually I don’t plan any sort of program at these summer or holiday events but this year I think I will include a pitch for home dialysis. In the past these events were unofficial and I organized them on my own but this year it is a more official NKC event and will be supported by NKC’s Regional Councils. I think getting some official support will help keep it going so they don’t depend entirely on my time and energy.
From my experience what you call the get together is important – it’s all about the branding. How about a monthly/quarterly potluck? – bring your favorite renal friendly recipe. I would think that most providers would be able to offer some financial support for the event. A potluck wouldn’t need a lot, money for paper plates and such or a flat amount per attendee - $5 a head allows a pretty nice bar-b-q when you add in community donations. Then see who comes and get a couple people to help plan the next one – have a date/location already in mind so attendees can mark their calendar.
Make it fun and try to get people to get in the habit of participating. Once there is a foundation of people engaging you can organize all sorts of useful events.
I’ve heard of clinics that had very successful support groups for home dialysis (PD and HHD) patients when they did them the way Bill suggests with a topic and sharing recipes and potlucks. It becomes a social outing for them. I believe home patients don’t see the clinic the same as in-center patients. For home patients, the clinic has positive associations. Patients feel like empowered individuals who feel respected by the staff and doctor for what they know and do.
Barriers to organizing a support group for in-center patients include schedules, rides, and the fact that many patients seem to want to get as far away from the clinic as possible when they’re not actually on dialysis. One of the “advantages” that staff tell patients is associated with in-center dialysis…Do in-center dialysis and you can separate your life here from your life at home. You can leave dialysis up to us (the professionals) and not have to see a machine and supplies in your house to remind you that you’re on dialysis. Of course this assumes that the pills and the diet and feeling sick and exhausted after treatment doesn’t remind someone that he/she is on dialysis. Why would an in-center patient want to return for support to a clinic that is associated with pain, feeling sick, having no privacy and feeling depersonalized?
The National Kidney Foundation affiliate has had gatherings in Kansas City that are attended by home and in-center patients as well as some staff members. Some are informal like walks or picnics. Others are more formal like our “patient of the year” dinner. Patients can bring family members and everyone seems to enjoy them. I’ve never heard of any problem getting the different groups of people together. These are more social outings instead of “support groups” per se, but people gain support from each other at them. Of course some people never participate, but that’s their choice and their loss.
Sounds nice and all, but I think it has to do with the kind of people who join these gatherings, I mean c’mon…
The people most likely to go to these gatherings are the extroverts, those who like to be around people and talk… …and those who don’t go are most likely those who are introverts…perhaps a few ambiverts may also go to the gatherings…
Why would an in-center patient want to return for support to a clinic that is associated with pain, feeling sick, having no privacy and feeling depersonalized?
Our support group meetings were held away from the unit on Sunday afternoons inbetween church or family meals which is a day that all patients are off dialysis, we got the transportation guy to provide transportation to patients who had a problem in that respect, we had beautiful, free catored meals each meeting etc. Although we had nice times of socialization at our meetings, they were primarily for education.
I think you are correct that patients don’t want to hear anything dialysis on their day off, but I believe that is because they associate dialysis with lousy txs and care. They don’t know that dialysis can be any better than that and they can feel in control of their txs. The more assertive patients did come to our group, but without education IN the unit at the teachable moment, I believe most patients take on a welfare-type mentality, a learned helplessness/dependency and are in denial about their prospects for good txs/care. As long as nephs and dialysis staff skip education, or give incomplete medical info thus fostering dependency, most patients are lulled right into this learned helplessness/dependent mindset. Patients become controlled, and sadly, I think this is exactly what most corps, nephs and management want.
If patients have graduated from school, held a job, maintained a home, raised a family etc., they certainly have the capacity to learn how to do self-care or get into a home program. If patients were better educated and supported by the medical staff and were expected to do all they can for themselves as a requirement for receiving txs, more patients would get involved in their care. It is natural to fear the txs., but when education is provided, it takes the fear away. So, I believe the medical ppl have created this situation by labeling patients as non-educable and by not providing competent education and support.
The people most likely to go to these gatherings are the extroverts, those who like to be around people and talk
You may be right about some of the people, but everyone didn’t mingle and some were brought by families who thought it would be good for them. The last couple of years we’ve had 300-400 people there of different ages, races, socioeconomic status, and I’d bet some of them were introverts. I don’t think you can meet everyone’s needs. Some people like to meet with people in groups, others like to talk in person with someone one-on-one, others like to meet people online or by phone. And still others don’t want to be bothered. In my opinion, you give people an opportunity and let them choose to participate or not. Maybe if they don’t participate this year, someone else talking about the fun they had (oh, did I forget to mention door prizes?), the one that didn’t come last year may come next year.
If patients were better educated and supported by the medical staff and were expected to do all they can for themselves as a requirement for receiving txs, more patients would get involved in their care. It is natural to fear the txs., but when education is provided, it takes the fear away. So, I believe the medical ppl have created this situation by labeling patients as non-educable and by not providing competent education and support.
The National Kidney Foundation affiliate has had gatherings in Kansas City that are attended by home and in-center patients as well as some staff members. Some are informal like walks or picnics. Others are more formal like our “patient of the year” dinner. Patients can bring family members and everyone seems to enjoy them. I’ve never heard of any problem getting the different groups of people together. These are more social outings instead of “support groups” per se, but people gain support from each other at them. Of course some people never participate, but that’s their choice and their loss.
Personally, I’m not too impressed with the kidney organization events. Any effort is appreciated, but ususally these events can not be attended by the average patient as they are too far away or require entrance fees that most kidney patients can not afford. They do not represent ongoing education or support. Like you said, they are more along the line of a social time, which can be nice, but is not meant to take the place of ongoing education and support. I think the kidney assoications would serve patients better if they got more involved in education on a unit by unit basis. Most patients aren’t interested in the association events or capable of attending when their daily needs for care are not met.
Certainly, it helluva fun no doubt about it! Its a great time to relax and let those hardened nerves soften…
I really encourage anyone on dialysis who has the energy and will to go to these events, its all worth it!
Beth, you know umm, one of the hardest barrier for me socializing in a sound healthy manner among so many people around me is communication. Having 90% of my hearing lost seems meaningless wandering around people not knowing what the heck is beeing said. :lol:
Like you said, the internet has become an alternative way to communicate and I must praise it as I have been benefiting greatly from it!
I think that many others who may be same position as I am or similiar may also benefit from the internet.
I sometimes wonder, wouldn’t it be cool that these social events stream live video over the net for broadband users? Just a thought… :roll:
Personally, I’m not too impressed with the kidney organization events. Any effort is appreciated, but ususally these events can not be attended by the average patient as they are too far away or require entrance fees that most kidney patients can not afford. They do not represent ongoing education or support.
This particular event is held in the two areas with the highest concentrations of patients in the state of Kansas – Kansas City and Wichita. The event is both educational and social. Last year, the speaker was Lori Hartwell who is a transplant recipient and she shared her thoughts about living with kidney disease. It used to be free to attend, but then we reserved over 100 meals that we’re eaten so we started charging $5 per person and some of the dialysis providers pay that for patients or family members pay for it. The meal being in a hotel costs over $15 so the NKF foots any part of the bill that isn’t supported by donations. It hasn’t been that easy to get sponsorship for patient events and organizations have limited staffing to do all the arrangements.
It would be easier and probably more personal if each clinic did its own event. However, the government warns dialysis providers not to give patients “gifts” worth $10 per item or $50 a year. The Office of the Inspector General believes anything over this could be an inducement for a patient to come to a clinic and there are penalties for violating this rule. It is possible that some clinics aren’t holding support groups or get-togethers because the cost could exceed these limits.
I can also tell you that I do education classes in Kansas City every other month for two weekend afternoons. We have patient as well as staff presenters. We get many fewer patients than are starting on treatment. What keeps me going is that those patients and family members who do take time out of their weekend to come rate the classes highly and say they’re recommend them to others. Hopefully they do, because it’s pretty obvious that the professionals who routinely get notices either don’t remember to tell patients or patients hope their kidneys won’t fail and they won’t need to know what we’re teaching.
Forget the group in person and lets go for the next idea=== WebCam meetings…
I like this idea Gus, but, you will run into some older patients who either don’t know how to use a computer or don’t have access. It is important for all patients to be able to obtain the needed information.
Bill Peckham
How about a monthly/quarterly potluck?
This is an excellent idea, except I would worry about how many would be phyiscally up to doing something like this.
What about an in-center Newsletter, has anyone ever tried this with any luck? My main concern is that if Nurses and Tech’s don’t know anything about NxStage, Buttonholing, and so forth, then I would expect the patients wouldn’t either. I would atleast like to see the patients have the resources available to them, for instance, this website. The Tech’s I have spoken to have never even heard of HDC and if they don’t know about it then the patients aren’t going to know about it either.
…and those who don’t go are most likely those who are introverts…perhaps a few ambiverts may also go to the gatherings…
Its a great time to relax and let those hardened nerves soften…