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

IMPORTANT MEETING!

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

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.

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 :)

HI.. its mo..

Hi people,
yes.. its Mo. im finally in town again.. and playing catch up. i had a few ideas.. i'll run by rida tomorrow night. if she's on shift with me. I do like where the ideas are all headed. It sounds for very interesting themes that we can eventually branch out into. Support groups actually are out there for many of our CF patients.. but they have to also keep in mind their Cepacia status. The minute they become cepacia positive, they can no longer be a part of the group as they cannot be in contact with cep negative people. In fact, they are completely ostracized.. because they can't even get in touch with other positive people. In case they catch each other's bugs.. and therefore cause even more trouble for a potential donor/recipient situation. Yeah.. ask me more about this when we are at work.
i'm just catching up.. feel a little slow in the game.. sorry. am gonna try really hard here.. my mind is buzzing with wedding stuff as well.. cause its in less than 8 months and i'm probably freaking out a wee bit right now.. so please dont hesitate to jump in and fill me in on the blanks going on around.
thanks for being patient..

Additional Comments

I too like the idea of “ the effectiveness of virtual support groups amongst young adult transplant patients (perhaps we could even narrow down to a specific organ, such as lung transplants?)”. I think it has “an edge” to it, it’s specific, and it’s also an area that is relatively new/interesting, and warrants further research. But, this is a call Rida has to make (Rida, what do you think? If I’ve gone off on a random tangent, I apologize).

I started looking up articles related to virtual networking (support) amongst younger transplant patients, as well as the psychosocial needs of transplant patients making the transition from pediatric to adult healthcare settings. This is what I found so far:

Basically, I found some articles that could support the ‘purpose’ of our study: We know that many of our younger patients are those diagnosed with CF, making the transition from pediatric to adult medical care, and in doing so they are not being adequately supported. The article by Tuchman et al. (2009) state that despite the importance of health care transition for patients with diseases such as CF and the existence of transition programs around the world, little is known about the factors that can yield a successful transition to adult care. Existing research has focused mostly on only 1 aspect of the transition process (the attitudes and practices of clinicians and CF centers) and has not fully address the host of other factors that are influential in a successful transition (i.e. emotional well-being, relationships, expectations about adult care), and there is a need for more research to identify evidence to develop transition programs and policy. The transition and transfer process needs to be integrated into the patient and family medical home. The article by Webb et al. (2010) also state there is no consistently applied standard of best practice for the targeted healthcare of patients transitioning from pediatric to adult transplant units. There is evidence that a significant proportion of graft loss in renal transplant patients occurs in the young patient age group, and it is possible that this is related among other factors, to the loss of psychosocial support as the patient is transferred to the adult care system. It has been shown that patients show improved resilience if a good network of friends and other support is established. One of the key points raised in the article was that the provision of recreation activities, such as transition camps, where trust can be built up with the new adult unit, is seen as an effective means of providing the ‘safe’ environment for young patients. Such initiatives allow patients to interact and network with other patients, and help greatly in the transition process.

Perhaps the objective our study could be the following: our study could measure and compare the psychological adjustment/coping between young adult transplant patients enrolled in a virtual community support group (available in-hospital, or post-discharge??) relative to those enrolled in an in-person support group/standard care group?

I found an editorial from Zelikovsky et. al (2010) which describes a virtual community software created by Bers et al, which was designed for adolescent transplant patients. The goal was to provide an opportunity for adolescents to creatively express their identities and concerns related to chronic illness, offer a means of support, increased social networking, and promote a sense of community. They could write stories about their transplant experiences, express their fears and frustations, share their hopes/accomplishments, and receive additional education on topics such as adherence to medical regimens and transition to college. The editorial did not state the effectiveness/outcomes of the intervention (I have to go back and look at the original article), however it did list the many potential advantages, which we should keep in mind, for the use of virtual communities, namely: overcoming barriers such as 1) transportation, 2) cost, 3) accessibility. Patients may live far from health care site and may not have means of transportation or may not want to incur additional costs in travel. Being able to log in for a few minutes, at a time that is convenient, in the comfort of their own home, may be more appealing, for young adults. Particularly for those who are shy or socially awkward and may otherwise avoid social interactions would be able to anonymously and freely communicate with others who have similar health problems.

Potential challenges: there would have to be a means for monitoring access to the virtual community, to ensure that only patients who meet specified criteria for age and health condition have access. There would also need to be clear guidelines for participants with regard to patient privacy and confidentiality (websites would have to be pass-word protected, the passwords distributed by the transplant center directly to their patients). There would also have to be a plan for dealing with crises including threats, suicidal ideations, accounts of abuse or cyber bulling/harassment on the site. Finally, participants must have access to a computer and Internet, which may pose as a barrier for younger adults of lower socioeconomic status. 

This is just the results of my initial lit search, was not sure really what topic we are trying to focus in on...I apologize if I’m way off.

Things to think about:
1) Which organ group are we focusing in on? Also, which stage (pre/post/both pre and post?)--I found an additional article that supports the idea of mixing pre- and post- transplants together within support groups/chat forums, as it proved to be beneficial for both parties.
2) For the virtual support intervention, when would it be implemented (during stay, or post-discharge), and what specifically would it comprise of?
3) How would we define "psychological adjustment/coping"--how would we measure it? (perhaps mixed methods, a quantiative survey/scale, plus a qualitative focus group/personal interviews)

Cya soon!

 Sam

Summary of my article & the offshoots from it

Hey Guys, This is Rida. Now I forewarn you this is a loooong post but ONLY because my article was super awesome, super pertinent to our topic, and also 30 pages long. Now i could have posted only the things pertinent to our research but I posted an overall summary just in case someone else springs an idea from one of the summary points. My article (if actually you get a chance, read it anyway because it has so many good points, especially regarding our research area topic) is by David Engle: Psychosocial Aspects of the Organ Transplant Experience: What has been established and what we need for the future.

Article Summary:

Transplantation is not considered a cure but an alternative form of treatment presenting the patient with ongoing medical and psychosocial challenges.

Psychosocial problems include struggles with family roles and relationships, sexual dysfunction, return to work, compliance to a necessary but challenging medical regimen, and the ongoing possibility of organ rejection--The recipient is caught in a situation where the technology, improved immunosuppression, and improved survival rates are available, but the certainty of staying alive until an organ is available is unknown.

The whole deal with tx is stressful. First acute injury (is a shock) and a chronic illness is a continues strain in losing relationships/finances. Then there’s the stress of “passing” the evaluation if indeed you are considered for an organ tx. & once they ARE listed, the waiting game is skyrockets their anxiety levels, for eg they might have to relocate to live closer to the facility that will provide organ transplant.

Transplant patients also know that someone has to die in order for them to receive a cadaver organ. Sometimes they may even wish an accident to happen, and then experience guilt that they have such thoughts

The recipient is caught in a situation where the technology, improved immunosuppression, and improved survival rates are available, but the certainty of staying alive until an organ is available is unknown. The recipient is caught in a situation where the technology, improved immunosuppression, and improved survival rates are available, but the certainty of staying alive until an organ is available is unknown.

Interesting note for research done on cancer pts: Peer discussion groups were helpful for women who lacked

support from their partners or physicians, but these groups were harmful for women who had high levels of support. It is uncertain whether this information holds true for transplant candidates, recipients, and caregivers. Given the fact that support groups, informational groups or a combination of the two have become standard practice in most transplant centers, we need to establish which groups have beneficial outcomes for which patients and caregivers

body image & sexuality—tx meds might not cause sexual dysfunction directly but indirectly; for eg weight gain from prednisone and hair growth from cyclosporine (esp in women) à negative feelings about one’s self

Patients often do not bring up sexual problems (Frierson et al., 1992; Raval, 1999), and doctors do not facilitate those discussions (Raval, 1999; Roche Laboratories, 1998; Tabler & Frierson, 1990).

researchers found that noncompliant recipients were at risk for an acute graft rejection at a rate of 4.17 times greater than those who were compliant. If some part of the transplant experience was negative, they were more likely to be noncompliant. Positive feelings regarding their physicians and the transplant experience increased compliance. Dew also found the quality of family relationships and the patient’s style of coping to be important to compliance.

There are few posttransplant studies designed to increase compliance in the transplant patient. Kober, Kachler, Broelsch, Kremer, and Henre-Bruns (1990) conducted a study following transplant patients for 36 months. They found that a support program did increase the patients’ compliance. However, we do not know if differences in teaching methods actually influences compliance after discharge. In summary, there is no clear data by which to determine what interventions have a positive influence on compliance in transplant candidates and recipients.

Several authors have suggested that the number of transplant patients exhibiting psychosocial problems is likely to be conservative and under reported. Dew and colleagues (1994, 1997) argue that it is difficult to get a good baseline of psychosocial problems pretransplant because patients may not want to jeopardize their acceptance for transplant.

They may fear that the disclosure of any such problems may lead to disqualification from the transplant list (Kelly et al., 1992). This underreporting may also happen posttransplant. They propose that recipients may feel compelled to report high quality of life satisfaction to the transplant team because of gratitude toward the transplant team and

because they continue to need follow-up care from that team. Others believe that recipients may manage posttransplant vulnerability

Needs for the Future

Those involved in transplant research need to shift their focus away from analyses of the psychosocial traits and states of transplant candidates. Hundreds of studies have established a large empirical understanding of those issues. A large number of predictive studies have also identified those who are at higher risk for posttransplant psychosocial

problems. Future quality of life research must be more methodologically sound, and must consider the validity of the subjective experience of the client. However, research must now focus on intervention studies in several areas.

-          Noncompliance is a wide-spread problem among those who receive different forms of medical treatment. However, for transplant recipients, noncompliance can have serious and sometimes fatal consequences. Therefore, we must begin intervention research to establish empirically how to create better regimen compliance in this population. Children and adolescents are at especially high risk, and therefore, highlight the need for methodologically sound research studies.

-          Return-to-work rates are lower than expected for transplant recipients. Some have not returned to work because they would loose insurance or disability coverage. However, a large segment of those unemployed are physically able to work. We need intervention programs designed to increase the return to work rates. Support groups, educational groups, and psychoeducational groups are a standard practice at many transplant centers. However, there is no empirical basis to determine which transplant candidates, recipients, and spouses may benefit from such groups and which may not. We also do not know if peer support groups have more or less benefit than educational groups. We can no longer presume that what is typically being done is working.

-          Sexual dysfunction affects a large percentage of transplant candidates and recipients. Both physicians and patients find hard to deal openly with this issue. Better intervention is needed to educate both patients and physicians about the sexual issues and options so that patients and spouses are better served.

-          Finally, there is established evidence that caregivers of transplant candidates and recipients are at risk for high levels of stress. Now we need intervention studies that will help us better serve this sometimes forgotten population.In summary, we have established the overall benefits of transplantation, and have identified psychosocial problem areas and those at higher risk for psychosocial problems.Now we need to turn research efforts in the direction of intervention.

My Twist on it:

- So in order to put an angle on "support groups" idea. How about:

1. The meaning of having another individual's organ attached to your own body? (issues like it's never really "yours", life long anxiety about rejection as the organ isn't yours, thus life long meds, the meaning of borrowing a body piece from someone else for the rest of your life, tackles quite a lot of psychological issues)

2. Can organ tx lead to psychiatric illnesses? ("being on the edge" for every little fever, infection, skin lesion, etc"? increased anxiety as a result. OR do they develop OCD? Due to complete cleanliness, taking meds on time, etc etc).

Just throwing out some ideas that haven't been done before :) At least I don't think and especially after reading my article i really think we need something with an edge. I personally like number 1

 

Hey Everyone!
This is Rida. So I am going to start off my writing the list of questions that we had discussed during our meeting.
1) can support group affect compliance --> pt quality of life @ UHN

2) How would e-support (e.g. transplant support on fb) compare to face to face?
3) How do you (pt) view your tx pre/post support group?

So re: this research topic, I have discussed my concerns with quite a few of you. Or maybe a couple. Who knows. Anyway, I was caught in a catch-22. I know that you have to play it politically correct in order to get a research study started, but at the same time I don't want to conform to that just so I can win the prize; I actually want to help these pt's out and I actually really, really like the idea of support groups. BUT as you guys have heard (or perhaps revisited that research site again on your own time) some of the winners' topics were very different...specific...at an angle. You know? like the one of the first prize winners' topics were "the meaning of fear for individuals with autmatic internal cardioverter-defibrillators who have received shock(s): A qualititative descriptive study". Now THAT is something at an angle, something specific and to a point. Something "out there". Now GIVEN, they probably had lots of help in fine tuning the title to this after the workshops that helps you put together your research but still.
So that's my catch-22. I really really want support groups for the pt's because I know all of them would go since they have nothing to do at the hospital, but I it's something so mundane I don't know if it will catch the judges' attention. & yes as many of you have pointed out we can start with ONE tx group, but I don't know. Just doesn't cut it for me. I mean, I guess the closest that we can come to having an "angle" to our research was the second question we came up with posted above (re: the e-support). That's something specific; unique.
Anyway, I know each of us have to find an article re: this issue so maybe one of you can be further inspired with a specific idea and can post it here so we can further tweak this idea?


ORRRRRRRR

We should have a backup plan. & there was this one code blue idea that Terri wanted to do for years, so maybe we should have one another idea that could be as a backup right? So Terri did you want to explore it here/on the blog site. Also, Terri, you were talking about some...UHN..card thing that has statistics on it. Did you end up finding it?

Lastly, paulette did find an article, im not sure if she was inspired but something specific from it but paulette could you post your one research article's name/what it was about generally/what specific things you got inspired from it that could maybe help fine tune our idea? Also, so that nobody else would re-do that article.
Thanks!

New and Exciting Research Ideas

So in a little imprompt research discussion we've been thinking we need a more precise angle to our research question.

Comment on this post to share you ideas of a specific research question or idea.

Here's one:

Use of virtual technology as a psychosocial support system in transplant patients.

(i.e. transplant specific facebook group, blogs, online chat rooms). This would be targeted at the younger generation and we would also need to research potential barriers to forming an online community support group such as confidentiality, but this would be a feasible method of connecting patients from all areas on Canada (and even the world).

-Paulette