Student Rsearch again; Privacy or Social Interaction

[Zach]

Thanks for the upbeat assessment Mitch.  We all love you so much.

 Go stauffenberg!

 

[Designstudent]

thanks everyone for your input    although we have been rather quiet during your discussions dont take it as if we are not listening, we have been checking the posts constantly and are getting VERY useful feedback from you all.    currently we have moved into our ideation phase, which basically means that we start sketching out ways that these problems can be possibly solved and eventually narrow them down to what we believe to be the best solution (which dosent happen overnight! more like a few weeks).  once we get some sort of direction, or something that we feel is a little concrete we will somehow make it available for you all to critique (whether through emails or posting images online), and then go back and make revisions. 

so please, continue with all the feedback and comments and we will be chiming in periodically! 

thanks,
alan and tony

[jbeany]

 

so please, continue with all the feedback and comments and we will be chiming in periodically! 

thanks,
alan and tony

It's been a month and a half.  The semester is almost over.  How's the project going?  Do we get to see the finished results?  Offer suggestions and comments on what you came up with?

Inquiring minds want to know!

[RichardMEL]

At my unit we have volunteers that come around every month or so and offer a foot massage.. so sounds like we have it good down under

The main problem with a lot of these ideas is a) space and b) cost. It may be different for private units, but definately for public ones, like the one I use, space is important, and there just isn't a budget for some of the niceties (personally I am planning to donate $10,000 to the unit anonymously slated to improve the paitents' experience, and see what happens). We have mostly TV's for each paitent but about 2 remotes in the unit (for ~10 or so stations) and the headphones are limited and don't always work, so some people just turn their TV volumes right up. For me it's all a bit useless as I have bad eyesight so a TV way above isn't much help to me, so I don't watch it. Wireless access to the 'net would be neat, though for me with one arm imobile, and being a touch typist, I don't think that would be very helpful to me, though I could possibly watch DVD's, so perhaps laptop power at stations might be a good idea - even a normal power socket so we can plug in phone chargers, laptop, DVD player, whatever.

We don't have tables attached to the chairs but we get thos hospital issue tables - the ones on wheels that you swivel around and have adjustable height, so that is pretty good.

I definately agree a cubicle system would be great - then I could leave my pillow, blanket etc there instead of carrying to and fro all the time. The problem as I see it is, as I suggested above, space, and administration of keys and lockers. We have some permanent patients but a lot of in patients from the hospital and some just starting waiting to go to a satellite unit, so there can be a lot of movement. I think they may have ~30 on the books at any one time, so if you allowed a cubbyhole for each that's a lot of space.

I definately agree on the comfy chairs... I sit in those and I come out with a sore lower back and horrobly sore butt (I guess I don't have enough cushioning there ). Even when I use my own pillow etc it doesn't help a lot.. so half the time I want to get the heck out of there more because my back is killing me more than I'm sick of the needles.

call bells and noise reduction headphones are a great idea. I bring my own in to listen to my ipod on and they help a lot!

[kitkatz]

I feel used.....where are the researchers?  They just take information and go, huh?

[stauffenberg]

While I agree that enough space should be provided in the patient's area for a friend to visit, I don't think that dialysis units should be designed to facilitate interaction between the patients at the cost of privacy.  Some patients are very ill, others are not, and the sick ones frighten the healthier ones with the prospect of the same thing eventually happening to them.  Patients are also extremely varied, and some like television and loud noise, while others like to sleep or read in quiet.  A dialysis center is like a shipwreck on a desert island -- a number of people who had nothing in common before the disaster are suddenly forced to be together.  The best solution is to screen the people off from each other, rather than bring them together.  For this, booths and headphones are helpful, especially since many dialysis patients are hard of hearing and so have the volume on the televison up way too high.  On the other hand, nurses complain that with individual booths they cannot see the patients well enough to intervene in an emergency, so some compromises are necessary.

As to the cold temperatures, some dialysis units are deliberately operated at abnormally low temperatures in order to raise the patients' blood pressure and reduce the chance of severe hypotension when too much fluid is withdrawn too quickly.

[meadowlandsnj]

.  A dialysis center is like a shipwreck on a desert island -- a number of people who had nothing in common before the disaster are suddenly forced to be together. 

You could say this website is also like a shipwreck on a deserted island.  None of us knew each other  before this website was founded.    I think we gain strength from each other and give each other confidence. 
I'm glad I was on that ship and
found this deserted island out in cyberland.

[RichardMEL]

I have to say that there are a couple of us in my unit who have bonded to a certain extent.. like the young guy I always joke with (and the staff) about heading to the pub for a few beers (this is a guy who puts on 5-6kg a session oops!) and we have a bit of fun. For me, I quite like the interaction and specially with the nurses... sort of turning a place that could be (and is, at times) fairly grim into something more pleasant. Don't get me wrong, I don't mean to be laughing and cracking jokes right through a 5 hour session, but sometimes a bit of fun can relieve just that "oh god another 3 hours to go" feeling. I guess maybe I am lucky because just about all the staff in my unit are really friendly and good natured and that helps.

We also have a few "visitor" chairs scattered about and people can and do visit. My only issue with that, and specially when I have visitors (and I think I get more than most which makes me feel a bit funny) is that I know the other patients don't really want to hear our conversation about family, finances, whatever... Like last week my brother was visiting me and he started talking about what the Neph told him about chances for transplant ops... and I had to stop him mid way and quietly suggest that given other patients here perhaps it was not so smart to be quoting stats and stuff because who knows what they are going through or where they are at etc.. Perhaps even they can't have a transplant and that would make them feel worse..I don'tknow but I thought it was considerate.

Having said that sometimes I think visitors are a welcome change. The other day an inpatient was in and his wife and young kids visited.. Must have been scary for the kids though they seemed to handle it OK, but it did bring a bit of life and colour (no, not noise! ) to the place.. and in that kind of situation I'd be all for it - I mean you're stuck in there, maybe doing dialysis for the first or second time, and if you can see your loved ones for at least part of that time.. well wouldn't that be great?

In a way a unit is its own sort of community... Heck, I see the crew at the unit far more than I see some "good" friends... so they do become like an extended sort of friendly group as well. Sure, if some want to do their own thing - no problem - but sort of like Cheers, it's kind of nice to come to a place where "everybody knows your name"

[Fighter]

Here are my ideas for a dialysis environment.
1. It is often too cold in the the dialysis unit and we have no control over our environment. It is either freeze or fry. Make it so we control our own piece of real estate's climate.
2. Do not put air/heat vents over the patients chairs.  How dumb is that?
3.  Personal TV for each patient with cable, game hook ups and games to be played.
4. Wireless internet.
5. Provide personal laptops patients can check in and out during their time there.
6. A table with a basket to hold my personal stuff.  The table needs to be able to tilt and be lowered to any height where the patient might need it.
7. A cup holder somewhere to hold my cup of ice or soda if I am so inclined to have one.   
8.  Have moveable lights so the patient does not have light in their eyes all treatment long.
9. Provide soundproof headphones so we can sleep through the noise.
10. A call button somewhere near so we can call a tech or nurse without having to yell.
12. Personalized DVD players to check in and out; with a library of movies.
13. A tech geek to trouble shoot laptops, games, movies and TVs on the spot instead of "tag and bag it" till we can get it fixed.
14. COMFORTABLE CHAIRS!!!! If you just found a chair that was comfortable to sit in for four hours and can be cleaned easily.
15.  A cubby system with locked tops so we can leave or personal stuff at the unit.  You need room for a blanket, a sheet, headphones, a book or magazine and pencil packs to hold pens and pencils for us.  It could be on wheels so it just comes with you to the chair.  If the table (mentioned above) was attached and could be disconnect to be used at any height that would be great.
16. Electrical systems that are up to code and are able to take the combination of machines, computers, and players without shorting out. Maybe put the dialysis machines on a separate electrical line from the computers and such we are using in the unit. I shorted out an electrical socket one day just plugging in my DVD player in my unit.
17. Space so my treatment does not have to seen or heard by every person in the place.
18. A soundproof area for the criers and screamers so we do not have to be awakened by them all treatment long.
19. A scale that really weighs you the right weight.  One that does not lie to you evertime you step on it. lol.

Just a few ideas, as I think of them I will let you know.

Kitkatz, after reading your post I feel VERY lucky about being dialyzed at my center. It provides for points 2-3(TV, not games)-4-6(large table but height not changeable)-8-14(big time!)-15(each patient has his own locker)-16-19(I think!!). I'm trying to imagine dialysis without all these little things, I'm guessing it would be a lot tougher, especially without a comfortable chair and wireless internet access.

Of course if you were doing home dialysis you could set up your own environment the way you want it. I'm curious about what you guys on home dialysis do to make yourselves more comfortable and to make time go by faster. Do we have a thread about that?

About the social interaction, I'm in favor of a compromise: I like my privacy when I'm tired, have work to do or just don't want to talk but I also like to learn to know the other patients and the nurses.

[Zach]

It provides for points 2-3(TV, not games)-4-6(large table but height not changeable)-8-14(big time!)-15(each patient has his own locker)-16-19(I think!!). I'm trying to imagine dialysis without all these little things, I'm guessing it would be a lot tougher, especially without a comfortable chair and wireless internet access.

I think we all should move to Brussels!

[angela515]

Of course if you were doing home dialysis you could set up your own environment the way you want it. I'm curious about what you guys on home dialysis do to make yourselves more comfortable and to make time go by faster. Do we have a thread about that?

My home dialysis is PD, doing CCPD. I have my machine set up near my bed and when I go to bed at night, I hook myself up before laying down, I then lay down, and forget about the machine and watch tv until I fall asleep as if I wasn't even doing dialysis. When I wake up in the morning I disconnect, start the drain process, go get my kids ready for school, once they are gone, I come back, hook up my bags to the drain line, start the drain, go take a shower and get dressed for my day... and throw my empty bags away.

I'm sure if I did CAPD or if I did CCPD during the day, my set up would be different... but since I do it while I sleep... I really don't even think about the fact I am doing it.. it's just like second nature, get your pj's on to go to bed, hook up before going to bed too..

[goofynina]

My routine is pretty much similar to Angela's but i am on the machine 11 hours.  I used to be a night owl but now that i am on CCPD i go to bed between 9pm and 10pm,  any later than that then i have to be on the machine later in the morning and i hate that, to me it's more of a lose lose situation,  i have to go to bed early and i am still on the machine for a couple of hours after i wake up   oh well, i'll take it over hemo anyday

[angieskidney]

Of course if you were doing home dialysis you could set up your own environment the way you want it. I'm curious about what you guys on home dialysis do to make yourselves more comfortable and to make time go by faster. Do we have a thread about that?

If I was at home I would lay on my bed. More comfy than those chairs that slide your butt out and are impossible to sit back up in at the end!!

And also I wouldn't just have to stick to the bed but could move to my desk chair and come to the computer .. as I would have buttonhole by then using blunts and since it is in my lower arm I could move a tiny bit.

Right?

When I was doin CCPD at home I would hook up and go to bed and it would run for 8 hrs and 45min. I LOVED it! Man I miss that kind

[Designstudent]

hello everyone!
sorry for the long delay in replying.  we have been really busy,(on this project amongst other things), but we are at the end of this semester, we presented out final 'concept' to stryker medical and it went pretts well. we still have the first 6 weeks of next semester to nail down all the small details and make a model.  what we have so far are basically cubicle systems that can be customized, we also found that 'wiring' every cubicle with a pc and an lcd screen with bluetooth capability will provide alot of the entertainment needs, and are currently working on what would be the best way to navigate a computer interface with mostly one hand. we have also designed a new chair, although that came after the cubcle system so its not as far along, but i feel strongly about it.  right now we are preparing 'packets' (or booklets) of what we have done in this first semester, basically explaining the concepts and putting them all together.  these are being created on the computer so i will have a jpeg image of each page of my packet (we are doing separate packets for grading purposes), the question is what is the best way to show everyone? if i put them n a slideshow it would easily be over 10mb, so im thinking the bast way would be to upload all the pages in a zipped folder to an online filesharing source, such as rapidshare or tinypic or something.  if anyone has a reccomendation or preferred uplaoding site please let me know since i want you all to be able to see it.

ill post this update in all out posts in hopes that everyone gets brought up to speed!

thanks,
alan

[kitkatz]

About damned time!  LOL

[AlasdairUK]

One of the most important things to keep in mind is that no patient likes to have to watch right across from him for four hours, three times a week, a mirror image of himself so he can see either how he is deteriorating or will deteriorate in the future. This 'mirror image' is another patient, who should never have a dialysis station right across from a patient so that the two have to watch each other all the time. I had to watch one fellow for years as he gradually vanished before my eyes, first having a left foot, then a right foot, then a left arm, then a right leg, amputated, until there was more of him left at home than coming to the dialysis unit! The patient across from me after he died was an old woman who never said a word but stared at me constantly, so every time I would look up from my reading, I would find her still staring intently at me.

Also, you should insulate patients from the horrors to the left and right of them. No one wants to have to listen to other patients screaming because they are sensitive to the needling, nor does anyone want to have to hear the anguished discussions they have with their relatives who visit. In general, there is insufficient sound insulation, so the person who wants to read has to concentrate against a background of people groaning from crampings, some screams, conversations of mind-numbing inanity, and the blaring television sets of the deaf.

The biggest topic of dispute among patients is the lighting, since some patients want to sleep and other people want to read. The lighting has to be arranged so it is possible for each treatment station to be individually illuminated without disturbing others.

Finally, privacy is more important than sociability. Some patients develop diarrhea during treatment, but since their blood pressure is too low for them to be allowed to be disconnected, stand, and go to the washroom, they have to defecate in a pan placed under them. As much as some people might like to socialize, it is more important to preserve privacy. Also, other patients can be alarmed and depressed by having to witness the medical emergencies that occur at other treatment stations, and no one dying on dialysis wants to have to look at the corpse of another patient who has died from severe hypotension, stroke, or heart attack during the treatment.

How do you balance the need for privacy and the need to socialize?

A reasonable amount of social interaction between staff and patients makes the treatment time go by and makes the environment warmer and makes having dialysis less of a burden.

I have also at different times seen or heard all of what Staffenberg outlines and at the point you do really want to shut off from what is happening to them.

I do not think friends, family should be allowed in a dialysis centre. It is after all an infection control environment. I normally take in my laptop and watch movies with earphones. So I do not hear what is going on and can focus on what I'm watching. I am by nature a friendly person and speak to all the staff and to some patients. I have made friends, but I go for life saving treatment.

[angieskidney]

I however DO love company as I get it so few and it makes the time pass faster and people with colds or coughs are NOT allowed in anyways.

I would love my chair to also have a nurse call bell, and indicator telling the nurse which chair. I also would love a phone to call any number of dialysis chairs to talk to other patients if they want to talk. If they can't then they can ignore or hit busy / noaccept.

I really hate my chair and would hope for one that doesn't slide the butt out. Also a mini-garbage since the nurses and cleaning guy keep moving the garbage out of reach of me (We can eat in my unit).

Kleenex hole would be cool too!


For pic hosting I like photobucket.com

[Designstudent]

I however DO love company as I get it so few and it makes the time pass faster and people with colds or coughs are NOT allowed in anyways.

I would love my chair to also have a nurse call bell, and indicator telling the nurse which chair. I also would love a phone to call any number of dialysis chairs to talk to other patients if they want to talk. If they can't then they can ignore or hit busy / noaccept.

I really hate my chair and would hope for one that doesn't slide the butt out. Also a mini-garbage since the nurses and cleaning guy keep moving the garbage out of reach of me (We can eat in my unit).

Kleenex hole would be cool too!


For pic hosting I like photobucket.com

these are alot of the things we planned on implementing, although they are not in the presenetation at this moment, primarily because the for the concept presentation the sponsor and instructor wanted us to focus on a 'product', something tangeable, although we do have a system to address many of these needs you probably wont see them until we finish the model and final presentation, since it will mostly be handled as software or a interface device.  but we did focus on this since it is what would help most of you, the patients.

[Rerun]

I do not think friends, family should be allowed in a dialysis centre. It is after all an infection control environment. I normally take in my laptop and watch movies with earphones. So I do not hear what is going on and can focus on what I'm watching. I am by nature a friendly person and speak to all the staff and to some patients. I have made friends, but I go for life saving treatment.

My thought is:  If people (friends and family) don't see this procedure they won't know how hard you have it and will not even think about how a transplant could save you this suffering.