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.

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

Online Forums and Sites

Here's the ones that already exist...


http://www.transplantbuddies.org/html/index.php


http://www.oetsg.com/

Jalowiec Coping Scale

Here's the ITNS link that shows the Jalowiec Coping Scale

http://www.itns.org/pdfs2009/Research_Tools_1_20.pdf

and here's the ITNS site I got it from


http://www.itns.org/ITNS_research_resources.php

-P :)

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 

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 

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