Researcher seeking interviewees

[AndreBR]

Hi,

I'm a first year sociology student at UC-Santa Barbara. My research interests concern the experiences of chronic kidney disease patients. I'm particularly interested in discussing the main challenges of having a chronic kidney disease, and how this forum has helped you overcome such challenges.

If you're willing to take part in a Skype interview (or phone), please let me know via PM or email: abuscariolli@ucsb.edu.

The interview suppose to last between 30-45 minutes. Don't hesitate to contact me if you have doubts.

Many thanks to kitkatz who allowed me to post this message!

Andre

[lulu836]

Absolutely NO!

[cassandra]

Just asking, why a Skype interview? Just email would work wouldn't it?

[AndreBR]

Hi Cassandra,

The advantage of a Skype or Phone interview is that I can make more open-ended questions and elaborate on them as the interview progress.

But I understand that some people might not feel comfortable having a Skype talk with someone they haven't met before. I'll talk to my supervisor and discuss the possibility of doing an email interview, or perhaps, using an online survey.

[kristina]

Hello Andre,
Perhaps it might be a good idea to give people the opportunity to answer your questions via a questionnaire ?
I can well imagine that some people in ESRF might feel sensitive about dialysis-related sociological questions, especially since dialysis is such a huge shock when it comes along and then the adjustment to dialysis-life (i.e. liquid-restrictions plus dietary-restrictions etc), plus the honest realization of the reality that dialysis is really a life-support, can often be very difficult to adapt to ...
Good luck wishes from Kristina. 
P.S. It would be wonderful if there could be some sociological input to create more public understanding to dialysis-related problems. That could go a long way and could be ever so helpful to dialysis-patients !

[lulu836]

I have a question............for the "researcher".  How did  you find this board?  What gives you permission to invade our privacy by even being here?  Why do the geeks always go for the gimp forums? 

[iolaire]

Why do the geeks always go for the gimp forums?

On travel forums you get university students doing studies on airplane loyalty programs and the like.  So I don’t think it’s only medical related forms.

[Simon Dog]

As a first year student I doubt he has the funding to pay the traditional amount given to someone subjecting themselves to a 45 minute interview.  When dialysis companies survey me, the going rate is $50 to $100/hour for my time.

But, he sounds legit - and will probably not conclude by offering to sell dialysis oriented timeshare condos or the like.

I would gladly do an email survey, but not carve an hour of unpaid time out of my day.   Too busy running too follow up appointments from my transplant.   

What gives you permission to invade our privacy by even being here? 

If his original post is truthful, and it probably is, Kitkatz gave the permission.

[kristina]

I have a question............for the "researcher".  How did  you find this board?  What gives you permission to invade our privacy by even being here?  Why do the geeks always go for the gimp forums?

Please tell me : what is a "gimp-forum"? I have never heard this expression before and : what do you mean by asking the researcher Andre why s/he "invades our privacy" by joining IHD ? What is private about ESRF and what is private about IHD? I do not understand what you could mean and as far as I am aware, IHD is well known through the Internet as a very decent ESRF-forum, where ESRF-sufferers can come along at all times and exchange their experiences.
You sound as if you have not experienced ESRF for too long? I only ask because I have been in ESRF most of my life and unfortunately I had to witness in my time many ESRF-patients who suffered terribly and unfortunately many of them are not with us any longer and because of that, I am always very glad and grateful if anyone, just anyone i.e a medical student, a qualified doctor or, as in this case a sociology student asks for some ESRF-information. I shall always be glad to answer their questions without any bother, because there might come along one day the person who brings our medical dilemma out of its misery and may start researching how to find a way forward to assist our miserable medical condition of needing constant life-support from one dialysis-treatment to the next, always in fear of an infection etc.
I shall always be grateful towards anyone who wants to find out more about ESRF and wants to research in order to assist and if they pick my brains and it might give them an idea and/or inspires them, how to go forward in a more constructive and better way, it is always worth my time.
Best wishes from Kristina.

[Simon Dog]

what is a "gimp-forum"?

One definition of "gimp" is a person with a medical physical impairment, most often used to describe people in wheelchairs, using walkers, etc.   An expansive definition could include ERSRD patients.

[kristina]

what is a "gimp-forum"?

One definition of "gimp" is a person with a medical physical impairment, most often used to describe people in wheelchairs, using walkers, etc.   An expansive definition could include ERSRD patients.

Hello Simon,
Many thanks for your kind explanation, what "gimp" means, it is very much appreciated as I have not heard it mentioned before. Mind you, I am not sure if it might be a good idea to include it into my vocabulary, as it does not come over as a respectful enough expression to describe someone's personal catastrophy  ...
Many thanks again for your kind explanation from Kristina.

[Rerun]

He asked the permission of both Administrators.  Why not educate people on Life with dialysis.

Rerun, Admin.

[GA_DAWG]

Gimp is a term used most often as a pejorative, certainly not an endearing term. I agree wholeheartedly with Kristina. Inever efuse to allow interns or residents to accompany doctors for appointments, and often find them more comfortimg than the actual doctors and that they ask more, what I consider, pertinent questions regarding actually living with ESRD. I also agree with Simon about answering a questionaire that could be done over a few sessions, notin a 45 minute block. It CAN be tiring keeping other appointments. If those of us suffering this disease do not provide information to people trying to understand our conditions, how do we expect them to tailor better care?

[AndreBR]

Thanks for the comments everybody, they were very helpful! Indeed, a questionnaire that members can fill online seems like a better idea.

I'll prepare the questionnaire and post in this topic by the end of next week. I'll also send a copy of the questionnaire via PM to those who said they are willing to participate.

Again, thanks for the help!

[Paul]

Gimp is a term used most often as a pejorative

VERY pejorative. The disabled word equivalent of using the N word at an afro-carribean person. I am seriously upset with, and disgusted at, Lulu836 for using it to describe this board.

[kitkatz]

I gave AndreBR permission to ask the board for help in his research.  I do NOT understand the rudeness towards him and his study.  Why not let people study something related to dialysis through our board.  He talked to me through Skype for over an hour and is genuinely wanting to do his research on dialysis patients.  Please me respectful to our researchers when they come here.  He asked admin for permission first and contacted our moderators so he could reach me first.  He followed online site protocol. 

Please discontinue the  "gimp" discussion.  That word is offensive to many people.  Please use politically correct language.

kitkatz,Admin

[lulu836]

OK.............you folks win!  FYI..........its just a word  by us, about us, with no harm, no foul.  Get a grip, people.  Buh byeeeee.

[Mr Ken]

As a first year student I doubt he has the funding to pay the traditional amount given to someone subjecting themselves to a 45 minute interview.  When dialysis companies survey me, the going rate is $50 to $100/hour for my time.

$50 to $100 dollars for your survey time... That is a new one...... LOL.... Bet you do not get many offers......

Ken

[Paul]

When dialysis companies survey me, the going rate is $50 to $100/hour for my time.

Well I wish you would put me in touch with these people, the best I get is the equivalent of about $18 an hour, and most pay a hell of a lot less!

[Simon Dog]

When dialysis companies survey me, the going rate is $50 to $100/hour for my time.

Well I wish you would put me in touch with these people, the best I get is the equivalent of about $18 an hour, and most pay a hell of a lot less!

Unfortunately, it is a "don't call us, we'll call you" situation

One was a Medicare survey being done by a contract firm.  Two 30 minute phone interviews, $25 each.

The other was an unnamed dialysis company that flew two people out from SF to Boston to interview me (really).    We spoke for 90 minutes or so and I was not expecting any $$.   At the end, they handed me $100 cash and thanked me.

On the low end was as NxStage interview at the clinic - $25 for about 45 minutes of my time stepping through the Bluetooth features of the iPAD software for the cycler before it was released.  Still, it was over $30/hour and I found the experience very enlightening.  They had me follow their printed instructions exactly and wanted to see if everything would work with someone using only those

So a total of 4 paid surveys out of 3 offers.

Oh, there was also the time the chief medical officer from Fresenius came to my house to interview me, but that was a freebie.

[Simon Dog]

Gimp is a term used most often as a pejorative

VERY pejorative. The disabled equivalent of using the N word at an afro-carribean person. I am seriously upset with, and disgusted at, Lulu836 for using it to describe this board.

If an Afro-American is someone of African descent living in the US, would that mean an Afro-Carribean person is someone of African descent living in the Carribean?  Just trying to parse consistently.

[cassandra]

Gimp is a term used most often as a pejorative

VERY pejorative. The disabled equivalent of using the N word at an afro-carribean person. I am seriously upset with, and disgusted at, Lulu836 for using it to describe this board.

If an Afro-American is someone of African descent living in the US, would that mean an Afro-Carribean person is someone of African descent living in the Carribean?  Just trying to parse consistently.

Yes Simon, Afro means curly black hair. Basically all people descendant of one of the millions of black people involuntarily transported to the white world and used as slaves have 'afro' in the way they are discribed by 'mainly' white people. Very consistent I'd say.

[Paul]

Please note that the following post contained the tag"Last Edit: November 10, 2018, 11:14:28 PM by Simon Dog" (which will now have been replaced by the tag telling of this edit). What Simon Dog actually did was delete my post and replace it with one of his own. Although the post says it is mine, nothing here was said by me, it is entirely Simon Dog masquerading as me!

Afro-caribbean means someone from Africa or the Caribbean,

It is an interesting discontinuity in parsing, because when you use Afro-X, X means the current country of residency if X=US, but country of origin in X!=US.   Not sure if an Afro-Canadian is a black person from Canada,  or a black person residing in Canada, eh?

[Paul]

Afro means curly black hair.

While what you say is factually correct, in the term "Afro-Caribbean" "Afro" is actually short for "African".

[GA_DAWG]

Most slaves brought to the US passed through the Caribbean islands. There was a molasses to rum to slaves trade that used that route.