Hi! PhD student and Renal wife from Oz

[RichardMEL]

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!! 

 

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....

[natnnnat]

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]

[rocker]

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

[natnnnat]

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
      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
      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
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.

[RichardMEL]

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! 

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
 

[cariad]

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.

[Meinuk]

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.

[natnnnat]

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.

[MooseMom]

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.

[Poppylicious]

... 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 ... 

I'm pleased that your presentations went well.  And that you liked the UK. I hope Gregory feels better soon.

[natnnnat]

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.

[natnnnat]

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. 

[MooseMom]

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.

[natnnnat]

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.

[natnnnat]

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.

[natnnnat]

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.

[natnnnat]

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

[MaryJoe]

   Good job Nat! Good picture, too! Uh, are we supposed to call you Dr. Nat now?   

[natnnnat]

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?     

[MooseMom]

I'm really pleased for you. 

[okarol]

  Well done!! Very happy for you!

[Poppylicious]

Hurrah!  Happy Graduation! Enjoy your Solitaire ... (what are your plans now, apart from lots of relaxation?)

 

[natnnnat]

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. 

[MooseMom]

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!

[natnnnat]

Thanks MM!