I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: natnnnat on May 27, 2010, 02:54:00 AM
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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
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I will bring the tar.....who'll bring the feathers??? :rofl;
ok. ok....this is ro
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:welcomesign; to IHD. Your research sounds interesting AND respectful as well as potentially useful. I hope that we can be helpful to each other.
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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 :welcomesign;
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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!
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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.
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Hey Moosemom!
You can be our resident renal anthropologist!
:thumbup; 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-)
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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.
:welcomesign;
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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
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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.
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Hi Natalya,
:welcomesign;
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.
;D
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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 :grouphug;, a group of sharing and caring people. Looking forward to your input.
Bajanne, Moderator
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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! :rofl;
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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 (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 (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...)
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You love my whining? Oh, you are SOOOOO going to regret saying that. It's my forte.
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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! :2thumbsup;
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.
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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.
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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! :rofl;
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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 :puke;!!! (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?
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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.
;D
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Hey Poppylicious :-)
Got some emails, and sent you some, will resend via PM.
(awfully rude English bint: hee hee hee!)
x
n
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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 :thumbup; :angel;
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Count me among the perpetually interested, nat! I would love to see the draft!
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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
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rocker you're more than welcome to take your clothes off for me and I'll be happy to test you in any way you like!! :rofl; :rofl; :rofl; :rofl;
:shy; :shy;
Seriously though it's always encouraging to read the boffins are working on this stuff. I feel this is the future way to go, and even though it may take decades, some of us here may yet benefit from the results of work being started now....
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Dear Rocker: Please do get your gear off! Not that it will help science or anything, but I just think if you want to, you really should nude up! The wonderful thing about the internet is you could be nude at the keyboard all the time and we'd never know.
RM: Doesn't that sound like a wager? ;)
Cariad: I had this lovely draft of a draft of a draft, and then I showed it to my supervisor who has me back at the grindstone. Watch this space... [she said, immeasurably nervously]
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Dear Rocker: Please do get your gear off!
Way ahead of you there.
Not that it will help science or anything, but I just think if you want to, you really should nude up!
Last year we moved to a more rural area. We only have a couple acres, but the closest house is like half a klick away. So now, I generally don't worry about nonsense like....covering up if I have to walk into the yard. It drives my daughter crazy "Moooom! Could you...oh god she's naked again."
The wonderful thing about the internet is you could be nude at the keyboard all the time and we'd never know.
If only I didn't have this compulsion to tell...
- rocker
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Hi dear people.
I have been very busily writing a lot lately, and recently sent out 78 individual requests for consent to quote from posts across three renal discussion forums. Now I have something to show for it, which I will be presenting to two different medical sociology conferences in September.
I have posted three pieces of writing up at http://godbold.name/experiencingdialysis/?page_id=127
With grateful acknowledgment to all who agreed to be quoted, and to you all for not kicking me out of the forums... yet!
At that website address (my research blog), there are two short pieces:
1. “Come back and post often”: making sense of kidney failure and dialysis via online renal discussion boards.
http://godbold.name/experiencingdialysis/wp-content/uploads/2010/08/GodboldBSAMedSoc42-v4-draft-with-consent.pdf (http://godbold.name/experiencingdialysis/wp-content/uploads/2010/08/GodboldBSAMedSoc42-v4-draft-with-consent.pdf)
A set of slides presented to the British Sociological Association’s Medical Sociology Group Annual Conference 2010, in Durham, UK, 1-3 September 2010
2. An evolving “normal”: making sense of renal dialysis via online discussion boards
http://godbold.name/experiencingdialysis/wp-content/uploads/2010/08/paper-hid9-normality-draft2_withconsents-Aug24.pdf (http://godbold.name/experiencingdialysis/wp-content/uploads/2010/08/paper-hid9-normality-draft2_withconsents-Aug24.pdf)
A paper presented at the “Making Sense of Health, Illness and Disease” conference in Oxford on Saturday 11th – 13th September 2010
And a longer piece, on which the short pieces are based:
Control of an evolving normality: making sense of kidney failure and dialysis via online renal discussion boards
http://godbold.name/experiencingdialysis/wp-content/uploads/2010/08/paper-medsoc2010-v2-24Aug2010.pdf (http://godbold.name/experiencingdialysis/wp-content/uploads/2010/08/paper-medsoc2010-v2-24Aug2010.pdf)
This last piece of writing is much longer than the others (warning: 18 pages) and is more of a draft - less refined - than the others.
It contains more quotes, and is more detailed.
I am posting these to the boards so that people can see what I am writing about, and in the hopes that some people might read them and may even send feedback. So far I have been able to incorporate feedback into the writing, which has improved some parts... with thanks to those who provided feedback - and those who took the time to read the earlier drafts.
Re attributing quotes to contributors: I found that most people chose not to be named, which meant that the few who did give a name for attributions stood out. I think maybe this isn't what most people would want. People who asked to be attributed, I will contact you privately again to double check, and if you do want a special mention I will do so. I prefer to assume people want anonymity until told differently, in this instance, repeatedly.
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Interesting reading there :) Hmm, I think I spied a typo of my own quote in there ("By" for "My") or maybe it wasn't me who wrote it in the first place! :rofl;
Anyway, about atributing people to quotes.. I think what would look the best is whatever you do, be consistent throughout. Seems if most people don't want to be named, then just don't name anyone (unless there's a special case). I think that way everyone's treated the same. Just my 2 pacific pesos on that one anyway.
A lot of good work...
.... though I'm still a bit distracted thinking about rocker naked
:shy;
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Natalya, dear, I looooove this!
I am at page 14 of the longest one - I'm impatient, so I skipped straight to this one - and I have many, many comments to make. I think I'll send you a private message once I get through the lot. I love analysis. You've done so well. It's lovely to see all these quotes in there, and though I remember many of the conversations and often know which people said what, the quotes take on a certain poetry, and dare I say grandeur, when they are placed in this academic setting. (Funny how that happens....)
I'll finish up and send off a PM, hopefully before the weekend is out. But truly, well done here.
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Well Done!
This is a giant step in bringing together academia, medical practitioners and patients. A lot can be learned by everyone. My takeaway is that the patient is the essential part of any successful chronic disease therapy.
In the case of online message boards, patients have filled a gaping need for education and support by doing what Epoman did, after being disappointed by the quality of what was out there, he did it himself in creating IHD as an unedited forum for everyone, then others followed/joined in. You've done a great job of identifying it, analyzing it, translating it with psycho/social academic corollaries and now publishing/presenting it. IHD and other sites mentioned are a huge step in the evolution of the provision of dialysis/renal replacement - we are all better off because they exist.
Now, we just need to be taken seriously.... It is the respect that you have shown in your paper(s) that will help us the next time a tech, nurse or doctor scoffs at us with "What you read on the internet".
Thank you.
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First, heartfelt thanks to the feedback from various people, who may have corrected errors or have given me the impetus to continue with their friendly comments. Most recently Meinuk, such fine feedback as this isn't just encouraging, there are many thought provoking comments and suggestions that come from messages like these which have been sent to me privately or posted here. Cariad, I need to reply to your PM which is similarly helpful and most appreciated. And a really thought provoking line from Stacy w/o an E which I will be pondering for some time to come. I wanted to report back on how the last few weeks' jaunt in the UK went.
So I’m back from my first walk and talk. I went to the UK, first to a medical sociology conference in Durham (northern England - BSA MedSoc), and later to a smaller conference in Oxford (Making Sense of Health Illness and Disease). People seemed to be interested in the papers I presented, they asked interesting questions and were generally kind and warm in their reception. They were really interested in the way people are using social media online to form communities and share knowledge outside of the established medical venues, and seemed to think that the idea of normality and tactics of control were very useful. I have a few ideas about expanding on those themes, and also on a few others... But medical sociologists are a kind of ‘easy’ audience for this kind of work. A harder audience would be a medical audience, who would I think be more critical. But I think it will be more relevant for the purposes of supporting renal patients, if I talk to renal practitioners... renal nurses for example. So next year (now that I have some practice under my belt) I think I should try to go to renal conferences ... if they will accept my submissions! So I have a great many things to think about now. It was worthwhile making the trek overseas.
In between I had a week to kill and so I had to go to Scotland and Northumberland. I went to Northumberland because I heard there was a garden there worth seeing, and it was OUTSTANDING: the garden at Alnwick Castle. Wondrous. I also went to a place called Burford in southern England, and found the tombstone of an ancestor who died in 1794, in the local church: William Chevasse. He was a ‘surgeon’ according to the slab, I shuddered to think what he got up to with saws and drills in those early days. Not a renal surgeon, that’s for sure. I went looking for William on my Dad's request, he is right into genealogy. I took many many photos, I am always amazed by these old countries with their ancient walls and buildings, the markets in Oxford where I went window shopping were relatively modern buildings, but they were built just before the white invasion over here in Oz. Visited the queen at Windsor castle last thing before going to catch my plane home (only to find that the plane was delayed 12 hours).
I conclude that the jet lag is worse when you fly forward in time (towards Australia) than the other direction, it has taken me an entire week to stop falling asleep at 5pm. But its incredibly good to be home. Travel is all very well but you can never be sure what the next shower will be like and which platform your train leaves from.
xxx
nat - happy to be home with the man and the cats
PS: speaking of the man, a few days after I got home Gregory developed such a wretched flu that he's been asleep most of the time and is running a fever. It makes me very nervous every time he gets any kind of illness. Hmm, flu like symptoms, could it be.. [suppresses dire thoughts] Got him to the doctor yesterday and he's on antibiotics now. Mutter. And his mother is in hospital again, for god’s sake she nearly had renal failure herself and no one told me because they didn't want to worry me. ffksajfd sjfdlksjafdskj fddsalfdjsl fkl fdmkdljf ! She has a stoma and a colostomy bag, and then got cancer of a feminine form, so just finished a month of radiation. She couldn't keep anything down and got so run down that she took herself to hospital which is where they said she nearly had renal failure... just from dehydration? is that right? They stopped working for a little while and they had to feed a whole lot of saline into her. She's 77 and a real fighter. Anyway she's coming home tomorrow they say. Here's hoping she will come good again soon, it’s been a rotten year for her.
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Our local community hospital sends out a monthly magazine. The last two pages of each edition are devoted to listing various support groups. I've posted about this on another thread; there are support groups for every malady imaginable, but there is not a SINGLE one devoted to renal/dialysis patients. I find this particularly galling as there is a dialysis clinic on the hospital's campus!!! So I phoned the number listed as the one to call if you have any questions about any of the support groups, and I called and left a message bemoaning the fact that there is nothing for renal patients. I got a phone message the next day from a very nice lady who said that no, there's no support group of this sort in our area, but there IS a website, so "call me back if you'd like more information." I figured I've already found most websites that are helpful, so I didn't bother returning her call.
Yes, the challenge will be to present your findings to nurses and doctors who don't seem to care that much about emotional support for their patients.
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... and got so run down that she took herself to hospital which is where they said she nearly had renal failure... just from dehydration? is that right? They stopped working for a little while and they had to feed a whole lot of saline into her.
My MiL has been hospitalised twice (2007 & 2010) with renal failure. The second time they did lots of checks to make sure it wasn't genetic, what with Blokey having kidney failure too. However, they couldn't find a link and she recovered both times with no apparent side effects. And it WAS dehydration, both times. She always claims to drink lots, but actually she drinks very little.
I always find it funny when folk from other parts talk about England as being old. I suppose I'm just so used to all the quaint little churches and the old cobbled streets and the mismatched houses with their quirky windows ... ;D
I'm pleased that your presentations went well. And that you liked the UK. I hope Gregory feels better soon.
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I mentioned that I've been writing lately and that I need to put the papers up as per my ongoing promise to IHD. I actually have two papers this time, though only one is based on my research here.
The first is a draft which is being reviewed at the moment, and reviewers always want changes, so it will change. That means that if you have things to say about it, your comments could be incorporated too. Please let me know if you have things to say about this paper. I have obtained individual permission from each person quoted in the paper.
It can be accessed here:
http://godbold.name/experiencingdialysis/?page_id=127 Look for 1. Draft: “Tensions in Compliance and Lay Surveillance”, to be revised pending review
Abstract
Literature on patient compliance explores why patients fail to follow practitioners’ instructions. This paper explore perspectives on “compliance” held by renal patients who contribute to online discussion groups, using discourse analysis to investigate how they conceptualise knowledge, authority and the role of the patient. In the discussion boards, patients are sometimes seen to have better understanding of the details of their illness than practitioners, a focus born of inhabiting their situation and therefore having more at stake. Some patients set themselves the task of supervising their own care, and where necessary, double-checking the work of practitioners. This does not threaten bio-medical knowledge –alternative therapies are rarely raised online. But these counter-discourses do challenge professional boundaries by making it the prerogative of patients to use biomedical knowledge to oversee their own care. The paper explores issues of knowing, surveillance and authority, and the potential usefulness of patients’ overseeing their own safety.
The second is an introduction to an edited book.
Godbold, N. (forthcoming). ‘Developing Relationships to Counter Patient Isolation and Support “Empowerment” in Health Care‘. In N. Godbold & M. Vaccarella (Eds.), Autonomous, Responsible, Alone: the Complexities of Patient Empowerment. London: Interdisciplinary Press.
It can be accessed here:
http://godbold.name/experiencingdialysis/?page_id=127
Look for 2. Godbold, N. (forthcoming). ‘Developing Relationships to Counter Patient Isolation and Support “Empowerment” in Health Care‘ etc etc
It’s about how people are expected to be “empowered” patients and some of the issues and dilemmas involved in that conception of the role of patients.
It doesn't use any quotes from IHD, though it does mention another chapter which I contributed, which is more or less the same as paper 4 at that URL: "An evolving normal". I posted that one here already.
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Hello dear IHDers
I've been very busy lately with writing, and have papers to show you.
To see them, go here: http://godbold.name/experiencingdialysis/?page_id=127
You will be asked for a username and password (this is because I am not allowed to put them online publicly, so this is my workaround to give you access for comment)
username: IHD (case sensitive)
password: Visitor01 (case sensitive)
I know this is still not very secure, but all I really want is to ensure that someone encountering them via a google search won't be able to read them (unless they also found this post).
I have 'cleaned up' the list at that URL, so some of the older, less developed writing (slides from presentations) are gone now, replaced with papers on the same topic.
The topic of each paper is as follows, but I removed the details of the papers here in order to separate the username and password details from the paper titles, if that makes sense.
1. People provide and make use of each other's emotional cues, which are useful to know 'how to feel' about situations. Therefore, people need emotional as well as factual information.
2. When people swap factual information in discussions, they usually do so by embedding their ideas in examples from their lives - they provide 'messy' rich descriptions which are useful because they demonstrate how they have taken generic facts and linked them to the complex situations people live in.
3. People develop knowledge about their bodies and their illness in three ways - generic facts, specific understandings and lived experiences. As health professionals usually don't have lived experience of renal failure, they only have access to two of those three ways. Discussion of tensions between safety and compliance for patients and their companions, who may develop detailed understandings of their illness and of best practice for their needs, but need to negotiate interactions with clinicians so as to avoid being seen as 'difficult patients'.
4. How 'empowerment' for patients is not as simple as shopping around for the right doctor, or being given 'control' over decisions.
5. People with kidney failure (or their companions) try to work out what would be 'normal' for most people in their situation, and also try to develop a sense of their own 'normal' experiences... which evolve in response to changes in health, such as changed renal function.
There is more to come soon as I am still writing up some other things.. and the PhD too. When the PhD is done, after a year or so it will appear online via a digital repository of Australian Phd Theses. Some people have asked to see it when it is done; I will post that URL here when it eventually comes out, and also send to those who have asked for it.
As usual, many many thanks for the support, hope you will be in touch if you have thoughts, ideas or complaints about what you see here.
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I've skimmed through the first two papers but intend to read them more thoroughly when time allows. They are really quite fascinating. You are right...dealing with kidney failure takes constant 'sense-making". I don't think I will ever read any IHD thread without thinking of your analyses.
I love the observation that people need emotional as well as factual information, that it is useful to know how to feel about situations.
I look forward to reading the other papers.
My fistula still seems odd to me, and this after having the thing for two years. Still haven't used it, but I'm told it's fab. But it still feels alien.
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These papers are very social sciency, my next plan is to find ways to publish versions of them for nephrology journals, turning theory into practical implications like, that people need time and the support of peers to work through making sense of renal failure... but also, that some people look for ways to control their situations... which had led me to a place where I was thinking and idea which you then raised in an thread the other day moosey
I was a bit excited about that and have to post about it soon... it was your idea that people need to be able to test their bloods at home, so that they can see how they are going with their diet for example, or if they need aranesp or not...
I have been thinking about that in terms of slowing down renal failure by supporting renal function with diet, and now I NEED that home testing machine myself because I am watching gregory's renal function failing bit by bit and very frustrated by the lack of blood tests... So this is something I'm thinking about for a next project.
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Hi dear IHDers.
I finally submitted my PhD on Feb 28th 2013. The night before I took Gregory to hospital with an infection that lasted three days, so it was not the calmest of times. I've already found spelling errors. Now it is being examined, which will take months.
Thanks to all contributors to IHateDialysis, Australian Dialysis Buddies and KidneyKorner, who generously shared their space, time and writings, and who have helped me learn to be a renal wife. Particular thanks to those generous members who consented to be quoted. Without your support there would be no Phd.
In Australia, a PhD is examined by three experts who read the thesis only, there is no opportunity for the candidate to 'defend' the thesis before a gathering of examiners and public hangers on. So once they have read my efforts, they will give me feedback and a mark each. So long as I pass, I will probably have to make changes according to their recommendations, and then resubmit. Or they might say its fabulous and there is nothing to be changed, which is a very unusual but possible result. Another, equally rare result, is to be told thanks but not to bother anymore, which is a fail.
If you would like to read it, it can be downloaded here
http://godbold.name/experiencingdialysis/?page_id=162
username = visitor01; password = visitor01
If you have feedback, I’d love to hear about it. Message me or use the contact me form at that URL.
Otherwise, a summary of my findings and recommendations appears below.
Summary of findings and recommendations
I have found that, as people make sense of kidney failure:
- People need repetition and time to develop understandings, find patterns in experiences and work out what is normal
- People need to make unique links from general information into their specific situations
- Hearing descriptions of other people’s experiences gives a person vocabulary to describe and understand their own experiences
- Understandings must be tested by time and experience, and
- Experience is closely related to authority
Recommendations
- Patients and families need ongoing exposure to ideas, because information is not ‘given’ in a single instant so much as understandings are developed over time.
- Patients and families need information from a range of sources, because repeated ideas from different sources create a sense of consensus and familiarity; also variations in stories gives us a vocabulary with which to make sense.
- Patients and families should be encouraged to network with their peers, because clinicians are not experienced at all aspects of being a patient – particularly, at making the unique, specific links which allow a person to live with chronic illness in their particular situation
- Patients and families could be advised to expect that making sense of renal failure will be ongoing, will take time, will involve constant change, and will involve trial and error. They could also be shown how to notice and respond to changes and encouraged to collaborate with clinicians.
- For this, clinicians also need training and some hospitals may need cultural change.
These changes are worth making because
- helping patients and their companions to make sense of kidney failure contributes to their capacity for adequate compliance, their ability to contribute to clinical safety, and their ongoing happiness.
Once again heartfelt thanks to all those who consented to be quoted, and to all members of IHD for not insisting I be sent packing as soon as I introduced myself.
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Also I have a new paper to show you (I'm the second name in the list of authors):
Hor, S., Godbold, N., Iedema, R. & Collier, A. 2013, ‘Finding the patient in patient safety‘, Social Science and Medicine, vol. 0, no. 0, pp. 1-17.
http://hea.sagepub.com/content/early/2013/01/23/1363459312472082
In the last decade, the field of patient safety has grappled with the complexity of health-care systems by attending to the activity of frontline clinicians. This article extends the field by highlighting the activity of patients and their carers in determining the safety of these systems. We draw on data from three studies exploring patients’ accounts of their health-care experiences in Australia and internationally, to show how patients and carers are currently contributing to the safety of their own care. Furthermore, we emphasise the importance of patient–clinician collaboration in ensuring the success of these activities. We argue that it is no longer sufficient to discuss if patients should be involved with ensuring their own safety. Given that patients are already involved, we propose a new conceptualisation of safety and systems that acknowledges their involvement and supports patient–provider collaboration to achieve safer care.
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Hey guess what!!!? I graduated on Sep 30th, one week ago. Since then I've mainly slept and played solitaire.
Gregory says now there's a doctor in the family he doesn't have to go to the hospital to get his scripts anymore. Obviously I told him to make an appointment with my secretary and I'll still leave him waiting in the stairwell for three hours. I'll put a photo into the members photos section.
And here is the link to the PhD which is officially online now: http://hdl.handle.net/10453/23540
modified to add: link to photo in Photos of our Members thread: http://ihatedialysis.com/forum/index.php?topic=3727.msg468509#msg468509
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:clap; Good job Nat! Good picture, too! Uh, are we supposed to call you Dr. Nat now? ???
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Please don't! I'd prefer not to go around peacocking though I guess I just did that didn't I. I suppose a better answer is, whenever you want to make me squirm, you can doc it up all you want. In which case we might also want to acknowledge some of the other docs around here. DocHemodoc for example? >:D
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I'm really pleased for you. :2thumbsup;
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:bandance; :bandance; :bandance; Well done!! Very happy for you!
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Hurrah! Happy Graduation! Enjoy your Solitaire ... (what are your plans now, apart from lots of relaxation?)
;D
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Well I just got within a whisker of getting funding for a new project. It was about how people translate medical instructions into everyday self care, and I wanted to involve health professionals and policy makers to create recommendations to help people living with CKD or diabetes. There were 250 or so initial applications, and I got as far as the 26 people who were interviewed, but I just found out yesterday, I wasn't chosen for funding. They probably chose about 12 projects to fund over 4 years. Its tough competition. I'm sad about missing out but it was pretty amazing I got as far as I did, for a first funding attempt, and my project is social sciences; most of the projects that get funded are hard sciences / clinical research type stuff.
So for now its nothing much. I'm going to try again for that project with a different funding body, their deadline is in February. Its a bit crazy though because this next funding body is meant to be even tougher competition. I have been working casual jobs since February and I'll have to keep going with that. A bit of teaching here, a bit of library work there. If a teaching position comes up I'll go for it but they don't come up much, about once every few years. Usually at this point people go to the US or Europe for work, and I'm not doing that: I want Gregory to stay at Westmead Hospital, he knows that team and they are great.
This week my dad is still in town - he came for the graduation ceremony and then got the flu! Stayed in bed for about four days! So I'm doing my marking at home and thinking seriously about how to get a week off before Christmas to do... NOTHING AT ALL.
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I'm sorry to hear that you didn't get chosen for funding, but I hope that you will be successful in your next attempt! You do good work!
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Thanks MM!