Kidney Support Group

Gus wrote:

The most viable soultion is that in-center clinics install wireless laptops so patients and staff can visit this website…they won’t be able to visit any other websites but only this one…

Hey Gus I like this idea. We wouldn’t want the old folks looking at porn sites, it wouldn’t be good for the heart :slight_smile: Just kidding :slight_smile:

When the clinics do not share the options available and the resources out there for patients, it is important that they found them another way. We can’t force the clinic to provide this information, although I would love to see it happen, it isn’t practical.

I guess for my clinic, until I go home, and then even after, I could provided the Newsletter. This however would not address other clinic’s and the lack of information being provided in those units.

I don’t think we can or should make judgments about what any dialysis patient can or cannot do. Just like on home dialysis, there are people on in-center dialysis who take care of homes, work, and do fun things. There are others who prefer to stay home. Some like to talk on the phone and others don’t. Some like to write/type notes. Others don’t. It sounds so obvious, but you can only do what you can do.

There are many older people who know how to use computers and use them to learn or keep in touch with friends and families. I don’t think we should assume that older people can’t learn how to use a computer. [Just look at me – ha!] In fact I just looked up a statistic and as of January 2006, over 205 million (out of 299 million) people in the U.S. were Internet users according to Nielsen/NetRatings. If true, this means that there are very few people who haven’t used the Internet.

We’ve been pushing for some time to get clinics to set up computers in the clinic or at least in the waiting room. I’ve heard of clinics that are doing this, but it’s possible that no one on this board has been to any of those clinics.

And so far as getting the word out about Home Dialysis Central, from a link on the home page, you can order free post cards to share when you go to clinic meetings or outings where staff or patients may attend.

Hey, my 86 year old Mum spends her days designing websites on her laptop!
Beachy :lol:

Beachy,

That is just great to hear. Too many times we stereo-type elderly people.
I have decided when I hit the golden years if I’m not already there when I fill out a form in a medical situation and am ask for age I’m going to put N/A
Not Applicable.

I wouldn’t limit use of computers or the Internet to education about kidney disease and treatment. First, there are times you might just want to play a game of solitaire or do work, or a project for school, to read something about some other health condition that you or a loved one has, to look up travel information, or to look at Amazon to choose a book or CD to order. Education is great and I want people to know about their illness and treatment, but I want people to be able to do their jobs and schoolwork and have some relaxation time too.

I’m concerned also that if the clinic only allowed people to visit certain kidney education sites, it might be that corporations would only let people visit their site which in a way is like censorship. Even if they allowed commonly used sites, as you said, everyone doesn’t know about Home Dialysis Central and I’d worry that they’d not have it in the “acceptable” sites. If the clinic didn’t offer home dialysis, it might have another reason not to tell people about our site. To help people know reputable sites, the clinic could provide a list of helpful sites and hopefully people would learn how to search to find others that the clinic didn’t know about.

If you were thinking that limiting to just kidney topics, you would keep patients off Internet porn or other sites, the clinic could set rules for using the the Internet during dialysis and have patients sign a contract. In the contract it could list the types of sites that are not allowed to be visited using the clinic computer and Internet. You could set up a filter that would prevent access to those sites. However, from what I’ve heard, you have to be careful about the filters that you set because some might not let people read about breast cancer simply because breast is in the search.

Other suggestions for how we can get this going?

I wouldn’t limit use of computers or the Internet to education about kidney disease and treatment. First, there are times you might just want to play a game of solitaire or do work, or a project for school, to read something about some other health condition that you or a loved one has, to look up travel information, or to look at Amazon to choose a book or CD to order. Education is great and I want people to know about their illness and treatment, but I want people to be able to do their jobs and schoolwork and have some relaxation time too.

That’s reasonable. Perhaps if it were limited no clinic wouldn’t be interested in installing limited access. Good point there…

I’m concerned also that if the clinic only allowed people to visit certain kidney education sites, it might be that corporations would only let people visit their site which in a way is like censorship. Even if they allowed commonly used sites, as you said, everyone doesn’t know about Home Dialysis Central and I’d worry that they’d not have it in the “acceptable” sites. If the clinic didn’t offer home dialysis, it might have another reason not to tell people about our site. To help people know reputable sites, the clinic could provide a list of helpful sites and hopefully people would learn how to search to find others that the clinic didn’t know about.

This brings to mind that the clinics most likely to allow it are those that offer home dialysis only. Hmmm, it may prove to be a hard task, convincing a clinic to offer that resource to their patients. If clinics with a home training center and have access to the net and willing to accept a free laptop for their center, maybe that would work…unless they just runoff with the laptop…hehe

If you were thinking that limiting to just kidney topics, you would keep patients off Internet porn or other sites, the clinic could set rules for using the the Internet during dialysis and have patients sign a contract.

That’s a plan…an agreement of some sort

In the contract it could list the types of sites that are not allowed to be visited using the clinic computer and Internet. You could set up a filter that would prevent access to those sites. However, from what I’ve heard, you have to be careful about the filters that you set because some might not let people read about breast cancer simply because breast is in the search.

There are some very cool firewall filters out today…I think they do a great job. Like cable television is programmed to server channels, also access can be programmed to server addresses/channels…

Other suggestions for how we can get this going?

The question is, would a clinic invest in something like this? What about funds, would a clinic if qualified do this for their patients…clinic gets a free laptop for patients use? Perhaps it already has been done, how did that go for other clinics? There are unsanswered questions, so I think before diving into the idea some researching would be needed or even a test bed.

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Northwest Kidney Centers has laptops. Some other clinics do too. I don’t know if NKC got their laptops donated. I suspect it’s easier to get donated laptops for non-profit clinics (NKC is non-profit) than for for-profit ones.

The other thing is to get clinics to invest in high speed wireless Internet. However, since I believe clinics have to send forms over the Internet to Networks and CMS, having an Internet connection is more likely than it was when we first conjured up the idea. I’m not sure how many clinics are on dial-up vs. high speed and whether clinics have wired or wireless Internet access. MEI did an Internet study of patient Internet use, but I don’t remember if it asked if there was Internet access at the clinic. Dori can always respond to this and say yes or no.

Here’s an article I wrote for Nephrology News & Issues about starting the NKC laptop program:
http://www.speakeasy.org/~bpeckham/internet.html

And here is an article NKC CEO Jackson wrote after the program was five years old:
http://www.nwkidney.org/images/website/docs/InternetArticleNNI.pdf

People are free to use the laptops to play games it doesn’t have to be kidney related.

Hey Bill, I wonder how I missed these articles… :stuck_out_tongue:

Can you tell us how this project progressed? Did it work? What problems were encountered? For example, computer viruses, or any technical problems that resulted in high maintenance of the laptops? What about patients who want to use the laptop but don’t know how to?

Whats the current status of the project today?

From that PDF link:

The laptop program has enticed volunteers to our organization.
Of the 20 people currently helping, most are working
adults, who volunteer in the evenings or on weekends. A volunteer
solicitation in the Microsoft staff newsletter produced
excellent results. These volunteers teach patients how to use
the laptop computer, and access email and the Internet.

The availability of volunteers has enticed a number of people to use the laptops, people who you might think wouldn’t be interested.

The current status is that there is wireless internet access in all 12 of NKC units and because of a donation from the Gates Foundation of 40 laptops there are three loner laptops in each unit plus some reserve units for when one goes down. The program is pretty popular these days.

Also I think the program encourages visitors: some grandparents have grandchildren sit with them for their runs because the grandchildren can spend the time online chatting with friends or whatever. Of course dialyzors have first dibs on the laptops but I think there is usually a laptop available because about half the user bring their own computers from home.

This sounds very interesting, am gonna look more into this and talk to my clinic about it, they’re non-profit as well. Just maybe will start a new chapter over here on the westcoast based on your envision on internet access for non-profit dialysis clinics… :slight_smile: …any pointers or tips would be helpful…

Beth writes:

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.

It sounds like the meetings are both a nice social time and educational, but it does not benefit the majority of patients. Only an elite group of patients who feel well enough or have family members who can get them there can attend. It is good that the assoc. has worked to get the cost down, nevertheless, most patients are on a low ecconomic level and are unable to work, may not be able to drive a car anymore, or can not afford the gas to get there. It is difficult enough for them to get their weekly groceries let alone travel a distance for a function and pay for a motel.

It sounds like the assoc. has done some good things to make it possible for a small percentage of patients to attend, but I would like to see the kidney associations do more to promote education and find ways to hold functions that more patients could attend. It is not just the kidney associations, but the whole system could do a lot more when it comes to education, support groups and better txs. Then maybe more patients would feel better and feel like attending association events.

Beth write:

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.

You seem to be talking about pre-dialysis type classes? If the medical professionals don’t remember to tell the patients about the classes that is a problem that needs to be brought to their attention.

I always say I see so much on “paper” in the Medicare initiatives and the Network projects re patient education. On paper it’s all there, but in reality we have medical professionals with antiquated attitudes when it comes to educating patients and allowing patients to be a partner in their care. They take the path of leaste resistance, whatever will make their work day the easiest and allow them to be in control. This is a wrong attitude -it is not professional and does not afford quality medical care. There can not be good care without ample education and patient participation. Unless patient advocacy groups are formed to negotiate for medical professionals to abide by regulations and deliver true education, we will always have a mediocre system that skirts it’s responsibility of competent patient care.

Events are not free. One huge barrier to having large meetings for patients is that they’re usually run by charities. Charities depend on donations to do events. In our NKF affiliate’s case, a committee helps to plan the meeting, develop a list of who we might target for support, and seek donations of give-aways. Letters go out to solicit funds and prizes from dialysis providers, transplant programs, pharmaceutical companies, local foundations, and corporations that are not kidney related. It takes months to plan one event and it is way more work than most people can imagine.

As I’ve said before, it would be much cheaper and easier for clinics to have their own educational/support groups. Some do…I don’t know how many. Sometimes these groups are ongoing to years and some come and go as enthusiasm among staff and patients waxes and wanes.

If you want a support group at your clinic, talk with the social worker and offer to help organize it. This would take the full burden off the social worker who very likely has more work than he/she can do on his/her plate already. You may find that he/she has wanted to do this before but didn’t know how to get started with the time he/she has available.

I’d suggest starting with a survey of patients to see interest in a patient meeting:
– what days and times would be convenient for a meeting
– whether patients would prefer to meet at the clinic or off site
– how many say they would come
– whether family members should/should not be invited
– whether the group should have educational content
– what topics people would like to know more about
– whether there should be a pot-luck and recipe sharing component
– what barriers people have to attending such a group (schedule, interest, transportation, other commitments, etc.)

These are only a few things I’ve usually included on surveys like this. Be sure to survey both in-center and home patients. If you get little response, you could still have a group but it might not be as large as you would like. It could grow over time though as patients talk it up. Keep your expectations realistic to avoid disappointment.

As I stated before in a post somewhere back there lol, we had a successful support group at one of my units for a time. It was a small group, but the patients who attended really enjoyoed it and benefited. We had lots of education and fun times too. Sadly, two of the regular attendees died and after that the remaining members were off and on and the group finally folded.

I firmly believe like with home hemo and the fact that most patients have never even heard of it, that if the nephs and staff used every means possible to educate patients while they are on tx, more patients would get involved in support groups. When patients are constantly given the message that they can come to tx and staff will take care of them they become depressed and dependent. As Dori said, patient care in units is done by an acute care model rather than an outpatient model.

Probably every subject under the sun, but education, is discussed in dialysis! Not that patients don’t ask questions. But to cope with dialysis patients must be proficiently educated. Many patients are not educable types, naturally speaking. I truly believe, nevertheless, that education is completely essential to living well and coping with ddialysis. So, I think it is up to the clinics to educate at the teachable moment which means IN the unit and I feel they should come up with creative ways to impart education to those who are resistant.

Dialysis staff become dysfuntional when they tell patients they need to do certain things and then become nags when some don’t listen. They then label everyone in the whole place as non-compliant. They form these negative attitudes about all patients based upon some. I have heard nephs and nurses berate some patients like they were 3 year old children because their phosporous was too high. Sometimes I feel like I am in an insane asylum rather than a dialysis clinic lol! The professionals need to take a class in How to Talk to a Patient 101.

I think if someone is going to be in this profession, they should have to take required courses in how to relate to patients in a professional way and how to educate patients on their tx. Really and truly, I think support groups and nice kidney functions are outgrowths of education. We can’t get the cart before the horse.

I have heard of units that have wonderful, creative educational initiatives. It takes the whole village working together. This is the way it should be in every unit. But in other units everyone is blah and stressed and patient ed. is the last thing they care about.

In one of my past units, the SW took me aside and explained when she was newly at the job fresh out of college and raring to make a difference,
she suggested lots of ed. initiatives and the neph and staff told her, essentially, to kool her jets…don’t do all that… just do the status quo…patients can’t learn. They would block her from educating patients…give her dirty looks. It put her light out and she said she felt the only thing she could do for patients was help them with their transportation and medication needs and that’s what she did for years.

I’ve had some wonderful SWs and dietitians as well as nurses, but they have all been held back from educating patients as they would want to due to unit circumstances where they are usually overworked. I’ve had a few nurses who were true patient advocates who bravely risked their jobs to defend patient rights and resisted corner cutting. These are the ones who end up leaving as they will not bend to unit politics.

But back to education…anyone with a chronic illness who wants to achieve a sense of normalcy knows education is the key. The quality units know this, too, and practice it.

Well said, Jane. I couldn’t agree more.

Gus wrote:

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

Hey, believe me…as I get older I have some of the same problems in large rooms with all kinds of background noise. At a table that holds 8-10 people, I have to strain to hear too.

That’s why I think education/support groups with fewer than 20 people seems to be best. Sometimes the best groups are the toward the lower end of that. Our Missouri Kidney Program education classes usually have 10-20 people counting family members and the people feel free to ask questions and talk with the patient and professional speakers and with each other. It’s terrific to watch!

Can you get hearing aids that help?