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