Hi! PhD student and Renal wife from Oz

[natnnnat]

Hi.  My name is Natalya.  I'm the wife of a kidney transplant recipient.  I'm also a PhD candidate in Sydney, Australia.  I am investigating how renal patients and their companions make sense of kidney failure and dialysis.  I found IHateDialysis in November last year and began reading the posts while I planned my research.  I quickly realised how much I was learning from them and changed my project because of that realisation.

I am joining IHD with two hats: one as a “renal-wife”, the other as a researcher.   My PhD project involves me learning about how people make sense of dialysis, which I hope to do...
1. in renal discussion boards like this one, by reading and participating, and 
2. through ongoing private “pen-pal” correspondence with renal patients or their companions.

If people don't tar and feather me out of town, then this will probably be the last time I make a big deal about my research in a thread.  Because my research is focused on the “normal” interactions already happening in the discussion boards, my intention is to try not to disrupt “business as usual”, while learning what it is like to take part in the discussions.   I won't go around asking research questions (much).  I want to be a “normal” member – as normal as possible anyway - making comments in reply to people's threads, based on my own and my husband's experiences.  PhDs take awhile so if I fit in alright, then I expect I will be around for at least a few years.

I am interested in the experiences of renal patients because my husband (Gregory) is a kidney transplant recipient.  His kidneys failed in 1986, when he was 19.  He was on PD for a year, in-centre haemodialysis for another four years, and received a transplant 18 years ago.  I also had a very dear friend James for over 20 years, who had kidney failure.  He was on PD and received a kidney transplant after only about a year or so.  James died in 2009 from cancer. 

What are the aims of the project
To understand how people make sense of renal failure and dialysis.  How do they cope (and not cope), what helps them and what hinders them? 

What good will it do?
Understanding how dialysis patients and their companions make sense, if there are common processes they go through, will be useful because it will help to know how to support them.  Maybe this will be useful straight away to IHD.   This will also contribute to understanding how people make sense in general.  There is a wealth of information for dialysis people on the boards, maybe there are also lessons to be learned here for the medical and counseling communities.

What does it involve?
There are two parts to my project
1.   My participating in renal discussion boards like this one

• I will read a lot, and post when I think I can contribute.
• I don't expect to just include the whole discussion board in my research.  When I start to get a sense of what threads would be useful for me to study, I then want to ask the people who posted to them, by private message, if they will permit me to include their post in my research.  I will write examples of what I want to say about the posts, so that people can see how I want to use their posts and send the writing with my request for permission.
• That way people will know if they are being written about or not (if you haven't heard from me, you aren't) and have a say in whether they are written about or not (if you don't give consent, you won't be included)

2.   Pen pal correspondence with renal patients or their families

• This is for any renal patient or their companions, even if they don't post to discussion boards.  It involves people sending me emails when it suits them, and receiving emails back from me.  Alternatively I can set up a private blog space to hold our conversations. I hope you will check out the details about being a pen pal at my website below.

 

Anyway, thanks for reading this far.  I hope that you will see some value in letting me stay in the community a little while, and you will see that I am a sincere, respectful, honest person with experiences worth sharing, and a genuine desire to learn from (and contribute to) the years of experience here.

Please visit http://godbold.name/experiencingdialysis/ anytime, where there is more information about me and the project.  Or post here, or send me a private message.  I want to hear your opinions, especially if you aren't very keen on the idea – if people don't like “being researched”, I would like to know, so that I can leave you in peace, with respect.


Natalya Godbold
PhD candidate
Centre for Health Communication
Faculty of Arts and Social Sciences
University of Technology, Sydney
Australia

[aharris2]

I will bring the tar.....who'll bring the feathers???   








ok. ok....this is ro

[monrein]

   to IHD.  Your research sounds interesting AND respectful as well as potentially useful.  I hope that we can be helpful to each other.

[Rerun]

Hello and welcome to IHD.  This sounds good to me.  I'm alone with no partner.  I hate dialysis but know it lets me live 3 days at at time.  My faith is born again Christian and His promise of a better place after death keeps me balanced without being pushed over the edge everyday.  You sound committed and I like that.

I hope you find this site helpful.  PM me anytime.

Rerun, Moderator          

[MooseMom]

I can't make any sense out of renal disease.  Dialysis makes sense only in that it keeps you alive.  You will get a myriad of responses, views, opinions and experiences because even our renal diseases are unique amongst us.  And we are each of us unique.  Some of us cope much better than others.  I think that at this point in time, I am one of the "others".  Our coping mechanisms have to be flexible because our conditions and circumstances differ from day to day.  I am trying to get on the transplant list, and the process is emotionally taxing because I know that it will be someone else, not me, who will decide whether or not I can just wait to get a new kidney.  That's not an easy thing to cope with.

If you want to ask me any specific questions, feel free to do so.  I am not easily insulted, so with me, you do not have to worry about being "respectful".  You'll probably get a lot of the answers you need just by reading and interacting with us.  You can be our resident renal anthropologist!

[monrein]

I'm not easily insulted either and I too appreciate directness but I like research that "respects" the informed consent of it's "subjects" in order to not inhibit the freedom of the forum.   I look forward to your posts Natalya and to learning more about your and your husband's experiences with ESRD.

[natnnnat]

Hey Moosemom! 

You can be our resident renal anthropologist!

I am so delighted with this idea, I want to make a tshirt:  "Renal anthropologist".  And you're spot on, my project is online ethnography, aka participatory fieldwork. 

aharris2: come to think of it, if it were just feathers, that might be fun.  8-)

[cariad]

Hi again, Natalya, and welcome. I have a masters in anthropology. There are so few of us anthropologists, renal or otherwise. I have often considered going back for my Ph.D now that my transplant is behind me. I would probably focus on renal issues as well, but for me it would have to center around transplant - it's really all I know. I've had little theories kicking around in my head for a few years.

I'm so glad you've joined us. If I can help at all, I would be honored to do so, though I had a very short dialysis career. You can always email me or cull my posts. I look forward to getting to know you better.

 

[Henry P Snicklesnorter]

.

[RichardMEL]

G'day Natalya (& Gregory) and welcome to IHD! 18 years going strong with a transplant is fantastic to hear! He must treasure every day he has free of dialysis, and to spend with you of course!!!

I think I get where you're coming from with your research, and I hope it comes together for you!!

RichardMEL, Moderator

[Jean]

Hi Natalya, and welcome to IHD. Doesnt bother me a bi tto be asked bout dialysis. Oh, wait, I am not on dialysis. But, I am stage 4, so someday I will be. Hope you can get all the info you need here.

[Poppylicious]

Hi Natalya,

 

My Blokey (husband) has been on dialysis for eleven months (haemo, now attempting peritoneal but it doesn't yet seem to be working well enough) after being diagnosed with kidney failure quite suddenly/unexpectedly not long after we were wed.

I quite like the idea of having a private blog.  I do blog, but I'm wary of how much detail I put into it because Blokey might read it and sometimes I just want to b!tch about him/the situation.

 

[Bajanne]

Welcome to our community, Natalya!  So glad you joined us.  There is lots of information here, as you have seen already.  we are open to anything that will be of benefit to those facing this renal challenge.  You are now part of the IHD family , a group of sharing and caring people.  Looking forward to your input.



Bajanne, Moderator

[MooseMom]

I believe it has the possibility to colour the nature of peoples participation. It certainly does in my case.

It doesn't in my case!  I'll just keep whining as usual!

[natnnnat]

Part of what makes sites like IHD work is that feeling that Henry describes, that you can talk safely and honestly, the feeling he describes that you can speak without being silenced by officialdom is like Epoman’s reasons for starting this site, “to stop having his posts censored or deleted by corporate run or sponsored dialysis site […] have a voice on the internet free from censorship”  (from the front page at http://www.ihatedialysis.com/).  If he or others feel that I remind them of such a corporate sponsored presence, then they may self censor their posts.  I think Henry has given a good description of what internet researchers call perceived privacy.  Even though this is a public space, people feel in some ways like it’s a private space, (they are posting from home, there is a the feeling of knowing the group of people “present”)… especially when a space operates to allow members to support each other, this is a really important thing.  IHD is about creating an archive of experiential knowledge about dialysis, but I think the feeling of have a safe space to speak in is pretty important.

Henry, does it make any difference to know that I can’t use any of your posts (not in any way) without your specific and individual consent?  Members can contact me and ask that I never incorporate any of their posts in any of my work, I might do that for you up front, unless you ever say otherwise?  I’ll probably read them, but they are public.  But not incorporate them, on any level.  Does that make any difference to your feeling researched?

Regarding scrutiny from officialdom, maybe I should comment as well, that I’m not supervised by a nephrologist or the like, with connections from hospitals or governments or such.  My funding is a commonwealth PhD scholarship supplemented with tutoring.  My supervisor Dr Michael Olsson is a lecturer in information management; we’re closer to sociologists or archivists than anything else.  My co-supervisor Prof Rick Iedema is a professor of health communication, with a critical approach to the hospital system.  One of the projects he is working on at the moment is called the 100 patient project, its about hearing from people who have experienced medical errors, including sometimes where someone died, and learning how clinicians and hospital administrators handled communicating the event.  He has done a lot of work around "open disclosure", working with clinicians to help them find ways to explain errors to patients and their families.  Here are links to my supervisors' profiles at UTS: 
Michael  http://datasearch2.uts.edu.au/fass/staff/listing/details.cfm?StaffId=1656
Rick   http://datasearch2.uts.edu.au/fass/academic/group/communication/details.cfm?StaffId=2491

Know also that in my writing, I won't be allowed to identify anything which could be connected with any hospital, clinic, ward, nurse or doctor, GP, company, brand, event, or the like.   If people ask me to identify them I can, but otherwise I can't identify people either, instead I would talk about "participant A". 

The warm welcome from many members of IHD… well you all know how amazing it is to be welcomed so warmly as people are welcomed here.  I want to try to work so that people who don’t want to be scrutinised, aren’t.

Moosemom:  I love your whining.
Cariad:  anthropology re transplants? Would be really worth doing, god what craziness!  I'm thinking hospital based ethnography following patient / family experiences would be really worthwhile, is that the sort of thing you have in mind?  I better not put this "renal anthropologist" tee shirt on then, I'll give it to you when you get started.  Maybe later I'll get one that says "renal ethnographer" ...

(edited 30 May to fix Henry's name [slaps forehead] sorry I called you Harry...)

[MooseMom]

You love my whining?  Oh, you are SOOOOO going to regret saying that.  It's my forte.

[cariad]

Natalya, you're such a sweetheart. I would do more interview-based research than ethnography, I reckon. I am interested in subjects like financial compensation for transplant, myths and beliefs about transplantation especially regarding donation, beliefs about 'cellular memory', and anything I do I would want to look at as internationally as possible. I am fascinated with how different cultures view transplant, and how ideologies from these cultures shape policy and treatment. I think you should wear whichever tee you like, with pride!

Henry, I have to admit I was a little surprised that you were made uncomfortable with this idea. I thought from our last exchange on the "press" thread that you wanted to get your story out, so to speak, to wider public consciousness. You're doing so well on dialysis, and the combined stories of people like you may point to some common theme that the whole renal community could really benefit from knowing. Certainly opt out of the project if you do not want to do it, but it seems like you're almost saying you don't want to participate here anymore if this project carries on? I believe each and every member who posts "colours the nature" of the forum, and our decisions to stay or go at any given time have a profound effect on the direction this place takes. I mean no offense by this, and I'm not trying to influence your personal feelings one way or the other. I am merely curious and would enjoy reading your further thoughts on the matter.

[murf]

natnnnat, how far down the track are you with your PHD? Proposal, Lit Review, Research, Writing up? When is your time-line to finish? All the best of luck to you. I have completed two Masters degrees in Education and have some idea how difficult a task you have. I started a PHD and finished my proposal. However, dialysis took over my life and did not have the energy to complete the research. Have read your website and would be happy to contribute in any way.

[MooseMom]

Hey Henry, I agree with cariad!  You have such a brilliant array of coping mechanisms in place, and I want to crawl inside of that brain of yours and grab some for myself.  You need to share, dude!

[natnnnat]

Hey Murf!  Two masters degrees is hardcore, well done you.   If I got sick now and had to stop PhDing, I'd be gutted!  I'd be furious!  I'd  !!!  (maybe that's an australian turn of phrase implying fury)   I've got 1.5 years left before I submit, according to the timeline.  Lit review "done" but ongoing, proposal done, ethics cleared... I'm in data collection mode with ongoing data analysis.  Craazy.

Cariad, I came across some articles about transplant and culture, let me go look for them... [mumbling]

Henry {blush} sorry I called you Harry.  I'm just ridiculous with names, even when they're written down in front of me I get them wrong hey?

[Poppylicious]

Hi Nat,

I emailed you but am unsure as to whether a) you recieved it, or b) you replied to it because my ISP has been playing silly beggars for the last two days and won't let me access my emails.  Tsk.

I just thought you ought to know so that you don't think I'm just some awfully rude English bint.

 

[natnnnat]

Hey Poppylicious :-) 
Got some emails, and sent you some, will resend via PM.
(awfully rude English bint:  hee hee hee!)
x
n

[natnnnat]

reposting this here so that my "project" stuff stays in the one thread.  Its an ex-librarian thing, related to filing and other forms of informational neatness.
Also I wanted to comment, as I say to EB below, I'm working on a paper for a conference in September.  So that means that soon I will send personal messages to people with a draft of a draft, asking permission to use quotes or ideas which have come from the boards.  That means, I won't be talking about your quotes or things you've said, unless you've seen what I plan to say and given the okay.  Also, once I've got the okay from individuals, and hammered out the draft a bit more, I guess I might post the whole draft?  I would like to do that as I would like people to comment.  Depends on what moderators prefer and whether people would be interested. 

I had read your introductory post and was interested by your research proposal. Do you have a reference chapter set up yet? I'd be curious to see it. (I'm a recovering academic.)

Hmm mm yeah there's an old literature review, but I'm reworking it.  I have a huge collection of papers, and a big fat Endnote library, which I'm refining into a collection of "renal experience" literature (the experiences of people who receive renal medicine)... there's also a lot of other literature about general patient experience (not necessarily renal patients) and also lots of great stuff from internet ethnography or about discussion boards.   So really I stand at the messy end of a recent literature explosion, and haven't incorporated the really useful stuff into summaries yet.  But I have to this month, because I'm writing up something for a conference in September.  So can I get back to you?  I have been thinking about putting stuff (i.e. some kind of overview of the renal experience literature) into the "news / articles" section soon anyway... when i get something shipshape written... or (depending on how masochistic your curiosity is) I could send you an annotated bibliography 

[cariad]

Count me among the perpetually interested, nat! I would love to see the draft!

[rocker]

Ooooooh, just found this thread.

I'm a caregiver.  I love being researched.  Do I have to take my clothes off?

Can I do it anyway?

Anything for science!

  - rocker