Saturday, February 5, 2011

Summary of the meeting on Friday

Hey Guys,

Good job everyone on Friday--and thank you for making time out to come while you were working/after your night shift/had to go to a night shift/and i-could-have-slept-in-today.

Our next task is to put everything together, and then send it to me so I can co ordinate/start putting things together in a proposal.. So basically, whatever was outlined in  the previous UHN email regarding your sub topics, and this post, please take it in view of how you would be writing your section for the proposal. (I will explain as I go along this post). Please, I would STRONGLY, suggest to read the proposal that was already in our blue folder given to us at the research days. It will give you an overall idea of how everything should be put together.

A little review on our meeting

IN ADDITION TO YOUR ALREADY OUTLINED TASKS IN UHN EMAIL (previously sent), in summray, I would like to add a few add on's which appeared after our Friday meeting.

1) Paulette, Jess & Liz
-Good job about finding everything out! We did all agree on the Ning---it is certianly the most cost effective and seems easy to use. Liz brought up a good point that we should make the layout simple so that the our participants aren't too focused on the outside shannanigans, but rather the fact that there is an online support system out there.
- Jess thanks for all those websites. However, as I discussed with paulette, perhaps also contact UHN's IT department to see what's already available HERE, at UHN. So I believe she did contact the IT department...perhaps she can provide any updates as to what happened after that? By contacting UHN IT, may they can support UHN nurses and help us set it up for free?
- There is also SIMS department at UHN, perhaps contact them too to make sure everything is covered and we know what's out there. Just in case you guys did not have the contact info (and perhaps they are available today too?)

For urgent matters, please contact us at the SIMS Customer Care Centre (x. 4357) OR HELP@uhn.on.ca.They are situated at:
LuCliff Building
700 Bay St., Suite 1500 (corner of Bay & Gerrard)
Toronto, ON
M5G 1Z6Phone (416-340-4800x5091) and fax (416-340-4083)

- One thing I can suggest is to talk to An, as she is covering the part "what kind of support systems are ALREADY in place", and together you guys can write up that aspect?

- In general, I was thinking while writing your summary, (co ordinating with An as you guys are writing similar parts?), start out broad, what's out there and who can we contact. Narrow down to what's at UHN, who can we contact (perhaps these two aspects An can cover), and then you guys write up what we will use in our research?..


Sam & Chao
--Good job !!--you found some really good articles. I think that, that could really support our theories.
-- I'm glad that articles were found supporting all organs and their trajectory...however Chao if we could either find articles that tell us that we should re assess coping in 1 month OR the more suitable option as Terri suggested, was to contact the co ordinators themselves and kind of get a time line for all the organs and about their improvement in well being, so we can base our evaluation timeline based on that. You can always give their names in your part when you are writing the reason for picking those timelines, as they are also valid sources. Then we can finally average out the evaluation timings for all organs.
- Sam --again, when writing your part of the proposal, you can write, coping can be problem focused, and emotional..as per our research.. we are assessing emotional (and then eventually integrate it with the rest of the research we are doing) :)


Tenzin
- Even if we don't find specific articles about online support and coping in TX PT's, then you can just state that in your part when writing it up. Again, remember to check back with Sam/An re: the definition of online support/coping and perhaps that would narrow down your research when finding articles.

An
- Continue down your research--you found some good resources out there!!
- co ordinate with the other members of the team that are doing research along your lines--save everyone extra time researching
- So again, when writing a proposal, make sure start broad and narrow it down & focus on our research. In individual remember to write co ordinators' names too (you can also email and ask further about the type of support provided NOT JUST at UHN but elsewhere as well--this info then you can relay to liz/jess/paulette when they are writing their part.

Mo & Terri
-- We were provided with some good insight about King's theory being the most applicable to our project--not just because it influences our nursing practice and the way we think, but also assists us with the methodology in how we want to plan our out research itself.
-- We were a bit torn between Roy's theory as it could see be directly applied to our research, but  Mo & Terri feel that they can back us up better with King. So then we had a delimma; to go with the theory that dr. Parse AND helen (the two judges) have been pushing us towards (Roy) and not be too comfortable backing it up, OR apply King (NOT suggested) and back it up BETTER. That's when an email was sent to Dr. Parse and Helen to provide us with further information re: what they think.
-- One thing that we discussed and should try to remember to ask the judges is --is it okay if we use both theories? I think this idea was discussed--perhaps we could be provided back with feedback as to what happened to that.
-- One more thing: not sure if you guys remember the email that I sent out some time ago, regarding what Helen sent me. It looked something like this:

Summary of Research Based Literature on
< topic description ie Patient Education>     
Authors         Purpose         Sample  Measurement     Findings       
. Anderson (1998)

I was discussing this with Terri & I'd have to agree with her analysis on this. So basically the above thign describes/assists us in finding conclusions from the articles we have found (Not sure if it would be too helpful now as most of us are done the lit review). But basically at the top goes the topic you are researching, and then kind of make a column/table that goes like this:

Column 1-- Authors
Column 2-- Purpose (of the study)
Column 3-- Sample-- I think this needs to be looked at even now because it is an important one
Column 4-- Findings


Ps-- Paulette & I were discussing and I think for the purpose of our proposal/eventual study, we will stick with FRESH post op's (for all organs) only, as that will then not screw up our research on the "trajectory" aspect of our proposal, and later on when actually conducting the study if we don't have enough new tx's, then we can change it up and include all pt's.  (Too bad the study wasn't done now eh, the way tx's are going now a days?)

-- this is a reminder to myself too (along with everyone) to include demographics in our "sample" size and why we are only choosing discharge pt's only.


Okay I think that is all for now.... I am proud of how much we have accomplished so far and am greatful for the continued dedication--Honest!!

What's next?
- Read the example of proposal in our blue folder given to us--notice the way their statements are backed up, notice how not all literature applies to their topic but they made it apply, notice the format, structure

- please write up your part and send it to me Wednesday Night (DEADLINE!!) so that Thursday Morning I can wake up early and start putting it together. This includes (startng yesterday--more than half a day, this weekend, and I know most of us are on nights, but perhaps till wednesday night it would be okay ish time as I know for the most part, the research aspect is done.

- The way the timeline is in MY head (and you can have your schedule for tx out for this one, otherwise it'll get complicated)
----> I have stuff in by Wednesday Night, February 9th
----> I start putting stuff together Thursday, February 10th
----> Working the weekend, so allow myself a leeway and work on it Monday February 14th (maybe sunday night?)
----> Give it to Terri to edit, because she stated it might take her half a day, so she can have all of tuesday February 15th to edit it as it's a big proposal
----> After Terri, we give it to Colleen to edit (and as we all know she is insanely busy) so perhaps from wednesday to friday (feb 16-18), colleen can edit it
----> after friday, for the weekend, we can take suggestions by colleen and revamp our proposal (i want to get it to her before friday so not only does she have sufficient time to edit it but also she won't work on it on the weekend so if we have it before that weekend, we can utilize that time to actually work in it)
----> that still gives us 5 days (between our shifts) before march 2nd, and good leeway time because what I described above is strict and ideal schedule, and if things go one way or another, we need a bit of leeway time too.


PLEASE please I want us all to win this, not just for us our unit, but for our patients too. Please don'r rush it---rushed work makes for not so good work. so PLEASE, once again, I am asking you if you are not happy with the deadline, and feel rushed and would like to give your 100% to this, we could push your INITIAL deadline to hand stuff TO me by Satuday night (as no point handing it in before that I will be working anyway), and from THERE on we can start our series of (fortunate) events, but all the dates would be pushed back.


Let me know!!
I don't know if anyone is awake right now after reading all this, so I'm gonna go too.

Keep me posted, esp about the dates/deadlines ASAP, because then those need to be set and expected to follow.

Thanks :)

-Rida.

Friday, February 4, 2011

Info from Ashleigh regarding e-support technologies

Hi All, sorry I've been absent but I've been sick for the past few days. Here is a summary of the info I recieved from Ashleigh:
  
-        Ning is a website that allows you to create your own social website (similar idea to facebook and it is user friendly for patients familiar with Facebook platform). Pricing & info here: http://about.ning.com/plans/
o   The group on Twitter agreed that it would be a good resource to look into.
-        What about BBS (BulletinBoard Systems)? This technology isn’t “new” but it has been proven to work in this capacity.
o   This stands for Bulletin Board System (http://en.wikipedia.org/wiki/Bulletin_board_system)
o   Search for “open source” BBS systems as these will be free.
o   There was discussion about whether or not you would need the forum to be moderated by an “expert”
§  Some said yes but others said that it can be led based on patient involvement/input.
§  Some moderation is important to ensure “trolls” are kept out. (Here is the description of a troll: http://en.wikipedia.org/wiki/Troll_%28Internet%29)
-        Check out a group online called: http://www.tudiabetes.org/ which is very active using twitter
-        www.caringvoices..ca is an online community for cancer survivors- hosted through PMH
-        Other suggested sites to look at:

-        A Special Interest Group SIG or electronic Community of Practice (eCoP) could: http://www.ewenger.com/theory/
o   Set up an email based e-network for sharing news, ideas, tools, relevant literature, asking for help and feedback on project ideas and other documents such as organizational policies.
o   Organize online events such as Webinars and Twitter chats 
o   Share a group blog to share ideas.
o   Share contact details and interests so people could make contact with each other for small group professional conversations using e-media and perhaps Skype.
o   Organize face to face events and meet-up perhaps in conjunction with significant Public Health and Health Promotion conferences.
o   Develop position and discussion papers on key issues.
-         
-        Igloo is a Canadian social network that typically charges but also allows free access for not for profit agencies (http://www.igloosoftware.com/free) the barriers to this are that you can only have up to 25 users in this account. If you want more than 25 people, the pricing increases tremendously.
-        Wall.fm is another FREE social networking site creator http://wall.fm
-        This website gives a list of different free social networking software: http://www.vivalogo.com/vl-resources/open-source-social-networking-software.htm
-        Skype could be used if you want video or audio features.

That's all I have for now, Jessica :)

Wednesday, February 2, 2011

E-support Proposal (Sneak Peak Before Friday!)

UHN Research Challenge

e-support proposal:


In order to create a medium for e-support we should first identify what is already insitu, both at UHN and other facilities. Again to re-iterate, the purpose of our research is to study the effectiveness of e-support on coping in post transplant patients.
Although there are many and varied forms of social media sites and forums on the web, the following sites were particularly interesting to us.
https://webmail.uhn.on.ca/exchweb/bin/redir.asp?URL=http://www.caringvoices.ca/en/
https://webmail.uhn.on.ca/exchweb/bin/redir.asp?URL=http://www.transplantbuddies.org/
https://webmail.uhn.on.ca/exchweb/bin/redir.asp?URL=http://myplanet.planetcancer.org/
We would like to use a program called Ning to set up our e-support. (http://www.ning.com/). This site will allow us to easily create a forum where participants in our research study can sign up with a secure login and discuss issues with other patients. Costs for this type of e-support will be minimal (as our sample size will be small, i.e. < 150).

Estimated costs = $2.95/month. If conducting our study for 1 year, total cost = $35.40
Estimated timeline to set up the site would be 1 day then regular maintenance of the site. My suggestion for moderating the site would be that we take turns on a bi-weekly basis checking the site for 1) usage – ensuring that participants are actually posting on the site and 2) inappropriate comments or information, such as profanity, harassment or abuse. As creators of the site we will have to power to delete any inappropriate comments from the site, but posting of topics will be solely from the research participants. There will be no medical advice given on this site from health care professionals and this will be made aware to subject participants at the beginning of the study as well as on a disclaimer on the actual site. 

Sunday, January 30, 2011

Hey guys,
great work on eeeeeeeeeeeeeeeverything :) Proud of you guys!

Please check your UHN email for an update regarding the discussion from Thursday and what is expected for our meeting this Friday. Please make sure you check it asap as it outlines our discussion with Helen and our assigned tasks. I know I said that I will post it on this blog but I remembered Helen saying to "cc:" her in our emails so she can monitor our progress and guide us through this so I thought that was a good idea.

My only worry is that because our online support i think exists, especially that transplant website on fb where tx pt's can connect... how is ours any unique? I was discussing this with paulette, and she had a good point about the fact that "we can spin it in the direction that ours is specific to our patients (i.e. Toronto) and will 'hopefully' be successful because of the sense of community we are creating for them". It is a good idea, but I remember Dr. Parse saying that for any research to be published, it has to be applicable to the general population. SO.... we can't just include a small section of Toronto-nians only. It has to apply to everyone. So remember whoever is covering the "so what"... we have to identify how ours is unique and can be interesting/important/unique enough to win judge's attention and the prize so we can carry our this research/maybe some dreamy day be lucky enough to get it published.

Remember....every assigned task/topic of each indivudal eventually needs to be weaved together, for our research to make sense and be successful.

So till next Friday, you guy's can always email on UHN/post on this blog to ask/clarify any questions but other htan that, make notes to yourself so that we can share on friday because i am not sure if everyone will have time to read every update posted by everyone else :)

Take care,
I'm around :)
-Rida.

Saturday, January 29, 2011

Great News from Dr Jalowiec!

Dear Ms Dalton:
Thank you for your questions about the Jalowiec Coping Scale. Please note that I used the JCS in my own 10-year NIH study on heart transplant patients both pre-op and post-op, and it has also been used by other researchers for other transplant populations so I'm sure it would be useful for your study on all kinds of transplant patients.
The JCS is a generic instrument that has been used for over 30 years in more than 30 countries (including Canada) to assess how people cope with numerous types of stressors, including many different kinds of illnesses plus developmental, social, work, family, and catastropic stressors.
The JCS has 60 cognitive and behavioral coping items with a Part A and a Part B: Part A measures how much the person used each coping method on a scale from 0-3 to cope with a particular stressor as noted on the cover page (stressor written/typed in by the researcher) and Part B measures on a 0-3 scale how much the person feels that coping method helped to decrease stress (ie, its effectiveness).
The JCS has 8 subscales that measure 8 different kinds of coping patterns: confrontive, evasive, optimistic, fatalistic, emotive, palliative, supportant, and self-reliant; the JCS packet of materials lists which items belong to which subscales. Different types of scores can be computed for the JCS, which are also described in the JCS packet. In addition, reliability and validity information is also provided in the packet.
Further information on the JCS can be found in my 2003 book chapter: The Jalowiec Coping Scale in the book by Strickland and DiIoria.
Please note that there is a fee of $75 (in US dollars) for permission to use the JCS and to obtain the JCS packet of materials. Therefore, if you are interested in using the JCS for your project, please send a check for $75 (in US dollars) made out to my name (Anne Jalowiec) to the following address:
Dr Anne Jalowiec

Wednesday, January 26, 2011

Update following today's exciting meeting!

Hi guys- great meeting today. Really liked the discussion that we had during the meeting today... everyone was really enthusiastic and that was fantastic!

I talked to Rida and Tenzin tonight after my meal of all-you-can-eat sushi.  I'm not doing very well so I wanted to be able to contribute some thoughts here in anticipation of tomorrow's great discussion. 

Here goes:

1) lit review: Interestingly, there were not a lot of transplant-specific articles discussing the effectiveness of message boards on pt's coping skills.  However, oncology nursing journals provided a wealth of information that could be transferable to the transplant patient population when developing our own message board.  I'll email the articles to you guys, as well as a meta-analyses I found specifically on virtual communities and e-support groups and their interactions.  The meta-analyses referenced lots of Randomized controlled trials (RCTs) that we could "use" in our lit review as well. 

One thing I noticed from lit review is that qualitatitve studies can be done on message boards. Some of the articles I've included are qualitatitive studies so we could take a look at different methodological approaches to researching our e-support groups.  What the researchers have typically done is research an existing support group and extract key themes by analyzing messages that were posted over a specified amount of time. I thought this was an interesting approach too, as it was one that did not involve developing a research board, but rather find an existing messageboard to study key themes that we could learn about our patients.  It's not very exciting though... as I'm not sure if that's what the judges are looking for.  However, it would save us time from having to make a message board to begin with.

2) "burning questions"
As we move forward in our e-support groups idea, I have a couple of logistical questions:
1) How are we going to maintain the message board? Is this message board sustainable? 
2) Who will serve as a moderator(s)?  Tenzin and I noted on some sites that a select group of pts actually acted as moderators (up to 5 people)
3) How will we "test" our message board?
4) Who will make our message board and what kind of costs are associated with it?
5) What will make our message board unique in relation to existing message boards?  Will we provide transplant-specific information on this messageboard as well? 

Tenzin also found some great websites showcasing existing e-support groups for transplant recipients. Really interesting and well constructed... definitely check them out! 

Anyway, I have to go to sleep... crossing my fingers that I'll see you all tomorrow!  Otherwise, here is a good start.

Cheers,
Liz 

Monday, January 24, 2011

Hi guys,
Found another review paper on the psychosocial experience in organ transplant patients. It talked about a lot of the psychosocial problems patients and families may face. Here’s what I gathered for lung patients.

It is broken down into 4 stages in the continuum of care:
1)      Pretransplant psychosocial problems:
-          Family forced to make adjustments
-          Changing roles
-          Anxiety about the future, losses of body integrity, comfort, independence, autonomy, privacy and control
-          Fear
-          Loss of income
-          Threats to economic wellbeing
2)      Prevevaluation psychosocial problems:
-          Worried about whether or not they will be eligible for transplant
-          Sense of relief after completing the evaluation
3)      Post-evaluation/preoperative psychosocial problems:
-          Burden of relocation
-          Possibility for hospitalization for pulmonary insufficiency and infection (physical confinement due to progressive disability)
-          Anxiety (wait time for transplant can lead to hopelessness and loss of control)
-          Guilt (someone has to die for them to receive the transplant)
4)       Post-operative/discharged psychosocial problems:
-          Unacknowledged anxiety on leaving the safety of the hospital
-          Estrangement from the community and family (unrealistic expectations from family)
-          Sexual dysfunction (medication-induced, body image issue)
-          Employment (early retirement, modification to work, unemployment)

The paper also identified 3 major psychological problems:
1)      Transient adjustment disorder
2)      Major depressive disorder
3)      PTSD

Psychosocial predictors of these problems are:  
-          History of psychiatric disorder
-          Low caregiver support
-          Low sense of mastery in the first 2 month post-transplant
-          Poor self-esteem
-          Use of avoidance coping strategies
-          Employment status
-          Caregiver’s health

I know we have settled on the e-support for lung patients from the East Coast. Maybe these are some of the issues we can look into. I think the first 2 stages are a good place to start. 

Engle, D. (2001). Psychosocial Aspects of the Organ Transplant Experience: What Has Been Established and What We Need for the Furture. Journal of Clinical Psychology. 57(4), 521-549. 

-Chao 

Monday, January 17, 2011


Hi guys,

Sorry about the late response. I’ve been trying so hard to get an accessible account to find articles since my UofT account was closed. I did some readings for social networking and social support for transplant patient and a lot of them has to do with social works rather than nursing, although there are a few good nursing articles out there as well. Anyways, I feel like we can take a look at what worked in other disciplines and kind of incorporate it into our nursing research. There is this particular article published in Social Works in Health Care in 2007 that talks about different factors needed in terms of social support that contributes to a better quality of life in transplant patient. A lot of it we can incorporated into a remote (or E-) social support for our patient population. 

Here’s a little summary of it:

4 components to social support network:
1)      
 Domain support (ex. Family, friends, associates at work, organization)
-        Paper suggest that family is import, but for it to work it needs to augment people from outside of the patient’s domain of life
-        Family provides emotional support, but people from outside the patient’s domain of life can give more informational support
-        (E-social support group can help enrich that domain of support that extends beyond the patient’s domain of life) 

2)      Size of support structure (ex. How many people)
-        Not as critical as other factors)
-        (Keeping the groups small may work to our advantage because its more manageable and provides a good starting point for expansion)

3)      Relationship (Ex. What makes it work?)
-        Can be classified into 3:
1.      Concrete: physical material, resources, and financial support   
2.      Emotional: mental and psychological support
3.      Informational: knowledge support
-        (E-social support group can help with number 3 for sure because it brings together people with common life experiences. It also can help them allocate resource for them which in a way can provide concrete support as well) 

4)      Access and maintenance (Ex. How to keep the group running?)
-        There are 5 components:
1.      Criticalness (critiquing the patient’s performance)
o   The paper suggest that there should be at least one professional to help critique their performance (that can be done by an RN)  
2.      Direction (the patient’s own sense of being supported)
3.      Closeness (social distance)
4.      Frequency
5.      Duration
-        (E-social support group can accommodate all 5 of those factors, especially the last 3, because remote access a lot them to be more socially connected and they can meet when they want and for however long they want)

This pretty much summarized what we came up with in our last meeting, but now we have literature support to back it up with. 

-Chao 
PS. The paper is Contributing of Post-Transplant Social Support to the Quality of Life of Transplant Recipients (2007). By Cetingok et al.  Social Work in Health Care. Vol. 45(3) ß sorry its not in APA

Sunday, January 16, 2011

IMPORTANT MEETING!

Can anyone meet up Monday morning at 7:30-7:45am ish at work to discuss??
Please respond! :)

Friday, January 14, 2011

Time to focus it in laddies!

Hey guys,

How are you? I hope all is well :)

First of all, thank you for everyone that has been involved in the research and Sam, thank you for finding so many different articles and everyone else's comments as well. They are all insightful and I am honestly impressed.

However, as much as the literature review is informative, it can lead one astray too. It's honestly time to make a decision. January 26 & 27 are not far away and I really think it's time to focus.

So far, in all honesty, great ideas, but I have a keen interest in one specific area. This of course, will be a whole group's idea and not just mine, and once everyone agrees, we can solidify it further.

I've been thinking, reading, thinking and reading some more. So far, we have a bunch of great ideas, but because they are all awesome-tastic it's hard to narrow, especially since they are all intertwined with one another.

my fav ideas thus far are (These of course don't have to be the titles but just in a nut shell gives you an idea of what I am thinking of in that idea and after reading everything, could classify in those categories) :

- The contemplation of identity when a foreign organ is attached to your own and how e-support can provide emotional stability

Pro:
- new idea; intrigues me
- my original wish to make a difference lies here; to provide support for ovehwlemed tx patients and not just to win this competition

Con:
- new idea; might not intrigue the judges.
- attacking two ideas: not only the psychological impact of having another organ in you, another PERSON's but also the new idea of online support groups; need tactful and very carefully chosen evaluative tools


- Identity crises among an individual's own body while harvesting another's organ: The psychological impact resulting in decreased compliance

Pros:
- focusing on an issue that already exists and is very problematic as per paullette , such as med compliance.
- also continues on the topic of how pts feel when someone else's organs are attached to theirs; thus intriguing me
- we can still use e-support as our guide to increase compliance

Cons:
- when it comes to compliance, especially med compliance, we might need a little support/education/intervention from a healthcare professional
- how do we measure/try to improve that; the tools that need to measure that okay compliance is not better...it's not just about support group that will make them feel better but it's about med compliance rates too...again inviting two different areas to focus our research on : meds compliance + emotional happiness..i guess that can relate to other topics too
- is it only med compliance? what other stuff includes in compliance that this support will help us improve

- The transition of tx patients from pediatric to adult care: Interventions to bridge the gap

Pros:
- interesting topic; one that is not my original "I REALLY WANNA DO THIS", but one that I defnitely support and think that indeed, that it is problematic
- also can use our e-support idea
- to me, sounds much simpler to play around with; no age limits, everyone can join in& help each other out (the patients) ; young and old, all talking about their anxities/experiences, giving each other advice

Cons:
- might not appeal to UHN; the topic branches out to sick kids too (and maybe other hospitals); focus might be too big for UHN judges and they just wanna stick to UHN for now
- might also need a "facilitator" to help guide the patients about reality about what actually happens when you transition; this facilitator would most likely be a staff member to provide accurate information (probably an admin for the e-support group), which would then require someone to assume that responsibility, which would lead to extra payment to that person, and that is not what UHN wants to hear.
- not just facilitator about what to expect at UHN but, the facilitator needs to talk to sick kids (or perhaps other hospitals) to see what the gap is and how it can be bridged together --> more research.


 Anyhoo, these are just my off shoots (i think i really like that word?) from reading everything. Everything that you guys provide (all reasons/statements/ideas) should from now help us narrow the focus down so we can finalize our topic asap.


I am still up for meeting in person :) Def think it's worth it. send that idea (in agreement with sam's ide aof meeting up) in UHN email as well.

See ya!
- The R.
just kidding
-Rida.

Monday, January 10, 2011

ideas for nursing research challenge

hi guys! happy new year if I haven't had a chance to see you guys on the floor.  I really like the ideas that have been floating around so far, and I'd like to add a couple of my own.  Here goes:

1. I really like the idea of evaluating quality of life post-transplant.  It would be interesting if there was a way we could evaluate longitudinally- i.e. at time of transplant, 3 mos and 6 mos and maybe even at 1 year post-tx (I don't know what our time limitations are).  This could be generalized to all tx groups. It would also be very interesting in comparing the different organ groups and whether the QOL varies amongst different groups.  We could conduct a survey using a QOL tool and possibly use the same one at 3 and 6 months.  The one issue that comes instantly to mind is repeated testing. Could be flawed as pts often are prepped when repeating testing and may answer as they assume is expected.  Does that make sense?  Anyway, that is one idea. 

2. I also really like the idea of using the internet as a support group tool, especially for lung tx recipients.  Combining with what Mo had spoken about in regards to different lung tx pts not being able to mix (because of cepacia status), it could be a great tool at increasing communication across different lung tx pts themselves and provide greater support all around. 

The one thing that I think will be a struggle is developing a support group that will provide adequate needs for all transplant groups.  We would have to conduct a needs assessment to really understand what pts might want from a support group.  The other issue we will run into is finding means for evaluation.  It could get tricky but I think we just need to think about it carefully.

Now, I just wanted to throw another idea into the pot.  Here is the reference from the article, found in the journal Liver Transplantation:. It was published recently in Oct 2010.

Miyazaki et al. (2010). Patients on the waiting list for Liver Transplantation: Caregiver Burden and Stress. Liver Transplantion, 16(10) 1164-1168. 

you can access the article remotely from home. I've also saved a pdf copy which I will email to you all as well.  All you have to do is go to UHN libraries from home and look up the journal title, "Liver Transplantation."  You should be able to navigate to get to the article, but let me know if you need help finding it. 

Basically, the idea behind this article is to look at caregiver stress and burden, specifically for pre-livers.  As we all know, pre-livers themselves are a distinct care group and create huge impact on both pts and their caregivers.  As pts deterioriate, caregivers often need to cope with changes to their loved ones that they do not anticipate, especially dealing with increasing encephalopathy, and body image changes (e.g. gross ascites, jaundice). 

The article itself focuses on caregivers and their coping with stress for pre-livers.  This is an interesting group to study and possibly, a support group for pre-liver caregivers could be very helpful.  Sometimes, pts deteriorate quickly and many family members are overwhelmed with the rapid decrease in mental status.  Caregivers are unsure of what to do and often seek out medical staff or admit their loved ones to ER as they are unable to cope with the pts at home.

From a clinical perspective, the management of a pre-liver patient can be very stressful..  I'm sure all off us (whether we have had years of experience or a couple of months) can echo how challenging care for a pre-liver can be.  The other idea I have is looking into research of an intervention for nurses faced with the challenge of providing care for a pre-liver. 

I know my idea once again has narrowed down the organ groups but i'm just throwing in my two cents.  Just wanted to make our pot of stew more juicy.... to be continued!!

Looking forward to all your excellent ideas!!!

Liz :)