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.
Well, that was the question that Dr. Parse kept on raising in regards to messageboards and also was question I had asked in the "burning questions" section- how are we going to spin it so it is unique for us?
ReplyDeleteI was thinking of ways to strengthen our argument-
1) We can argue that we are setting it up from the beginning so we can track the progression and usage of our board. We can identify prevalent themes from the beginning of our "creation" as we will have sole "control" over it.
2) We can say that we are piloting with our patients only as we are able to control other variables in our TGH patient population, including most importantly, standard of care. A messageboard would be supplementary to our current standard of care, and thus, we could measure how a messageboard could affect our patients' coping abilities.
We need to keep it TGH specific in order to control for other variables. Otherwise, we will be uncertain about what we are measuring.
-Liz
Hi everyone,
ReplyDeleteI had quick discussions with Susan K. And Edilyn, L. Regarding our projects and asked them for any suggestions or who should we contact for more info.
So far, there are a number of support systems :
- Liver foundation http://www.liver.ca/Patient_Information/CLF_Support_Programs.aspx
- Kidney foundation http://www.kidney.ca/Page.aspx?pid=255
- CF foundation http://www.ccfftoronto.ca/aboutCF.htm
- Civitan Toronto Lung transplant: http://torontolungtransplantclub.org/
- Mentor program in UHN,
- Peer support group http://mervsheppard.blogspot.com/2009/05/toronto-lung-transplant-support-group.html
Most of the support organizations have their local chapters, events, facebooks
I agree with Liz in terms of building local TGH support system. Maybe not all of recipients use our discussionboard but a lof of them will need this because it build a sense of communitbecause it build a sense of a community when they go through the same surgeries and standard of care or same hospital.....
I will contact a few patient assessment coordinators and recipient coordinators for more info.
I would like to know whether anyone in our group have contacted with them or not, so they don’t receive the same email requests for info. ...
An
^ hey An, good start :)
ReplyDeleteyou wanted me to make sure if you are on the right track, and I am not sure if you have already done this, but make sure you review literature that outlines other support programs that are out there for all tx patients in general, not just TGH. when you write a proposal, you have to be aware of what's already out there (not just at UHN) which im sure will come up (if available) during literature reviews...suhc as online support? peer supporT? etc (as outlined in the UHN email) Let me know if I can be of help with anything.
Liz--ive emailed helen about both of our views. you bring up some good points, and we can def. use them, but my only concern is re: what dr. parse said "it has to be applicable to everyone".
ReplyDeleteSo anyway ive emailed helen about it, ill update you with what she says :)
Hey Helen,
ReplyDeleteHow are you? Hope all is well :)
Thank you for your continued input--appreciate it.
I was a bit concerned re: something in our research. There are online support groups out there for transplant patients, like on facebook, so how is ours unique? well one thing is we are actually studying effectiveness of the online support which I don't think there is much out there on. Is that something worthy in the eyes of the judges? besides, I am glad that there is at least SOME stuff out there re: tx online support, because that adds to the feasibility of putting our plan into action...correct?
My group wanted to also say that we are different because we are monitoring our patient population on a forum we created at TGH...specifically, as one group member put it:
"1) we are setting it up from the beginning so we can track the progression and usage of our board. We can identify prevalent themes from the beginning of our "creation" as we will have sole "control" over it.
2) we are piloting with our patients only as we are able to control other variables in our TGH patient population, including most importantly, standard of care. A messageboard would be supplementary to our current standard of care, and thus, we could measure how a messageboard could affect our patients' coping abilities.
We need to keep it TGH specific in order to control for other variables. Otherwise, we will be uncertain about what we are measuring."
What are your thoughts about this?
My only concern is that I remember Dr. Parse saying that our research has to be broad, and not just applicable to a specific population if we wanted the research to be carried out and published.
SO SHEEEE SAIDDDD:
Hello RIda, It is quite acceptable to research existing interventions with different populations and at different organizations. It is also helpful to duplicate others interventions in different settings. What works well in one setting sometimes does not translate to others - which would be an important finding. I also expect our population is quite different. As you say, lots of online support groups, but maybe never evaluated or published. It would make a significant contribution to nursing knowledge, as well as to our patients! Dr Parse's comment should be read as: transplant patients, but you might just enroll patients with particular kinds of transplant. We want to be able to generalize the findings from our sample ( patients with xx type of transplant receiving care at TGH) to the population of interest ( transpant population).
Does that help?
Helen
& then III was like HOOLD up:
So how would the findings from our particular research at particular TGH be broadened to apply to transplant population in general? can we do that? i was just being really finicky because I know for research to be actually acceptable everything has to be re done... for example whatever conclusions we draw from our research would be based on particular methods/population numbers based on TGH only...for it to apply to other populations.. may cause other researchers to think "well there could be other confounding variables at TGH that might have affected the results and these findings may not apply to tx patients in other areas"
Does that make ..sense? hopefully?
& SHE WAS LIKE:
HI, What we do is to collect demographic information on our study participants and compare this with the larger transplant population.. if it is quite similar, then this strenghthens the generalizability. If it is very different, then we say so.
Helen
;) i tried to make it high school drama ish to add spice to the research lol