How has IHD helped you as a transplant recipient, donor, or family member?

[JRA]

Note: Thank you Karol for supporting this research project   



An open invitation to everyone in the IHD community

Dear IHD members,

My name is Jamie R. Anderson and I'm a graduate researcher working on a dissertation. For the past 5 years I've been researching transplant issues in Japan and around the world and am currently conducting a study (together with colleagues) on how online support groups empower patients and their families. As part of this research project, we would like to invite you to participate in a short survey to collect your thoughts and feelings on how online spaces like this forum have affected your ability to meet your health needs (or have helped you better understand the situation of family members dealing with illness). We are also interested in how participating in online forums has affected your ability to make informed treatment decisions, and has affected your relation with primary caregivers. Below is a short description of the study.

Study Description: A study of patient empowerment through participation in online support groups
Looking for:

A) Recipients, donors, family members. 

B) Who are pre/post-operation.

C) Who have used online transplant forums for support and/or information gathering purposes. 

D) Who are at least 16 years of age.

* We are especially interested in attracting participants who frequently read forum posts but who rarely (or never) post questions or responses.

Time Required: The survey takes roughly 15 minutes to complete.

As a token of our appreciation, all participants in this study will be entered into a drawing for one of four $25 Visa gift certificates.

Every precaution will be taken to ensure the privacy of individual forum members and to respect the stated policies of the forum. All data collected from the survey is strictly for research purposes and will be erased from our computers upon completion of the project.

At the completion of the research project, we would be happy to share any findings of the research with any interested members in the forum community.

**** Please feel free to recommend this survey to any acquaintances who meet the criteria listed above. *****

Survey links:

DONORS     
https://spreadsheets.google.com/viewform?formkey=dEtReHJ4MGRBYmRfUVNyV1dmcXF5c2c6MA

FAMILY MEMBERS
     https://spreadsheets.google.com/viewform?formkey=dHRLUXJVUWNIcG1MRUMxZ3dKVU4wYnc6MA

RECIPIENTS
     https://spreadsheets.google.com/viewform?formkey=dGVjZkFLRE0tbV9rZ0tUME8wY0NzNnc6MA


Thank You in advance for your interest and participation!       

Jamie R. Anderson
Doctoral candidate

Kyoto University Graduate School

Department of Human and Environmental Studies

[JRA]

Just a quick update on the survey progress:

In the past two weeks, we have received 75 responses from members of IHD (Transplant Stories) and other transplant message boards. There are still 5 weeks remaining so if you have not yet filled out the survey, you still have a chance to participate.

Please feel free to recommend the survey to others, to tweet it, or to post it to Facebook, etc..

Below is the link to the survey page on the net:

https://spreadsheets.google.com/viewform?formkey=dHkxd0h6QlpLTHFVbUxVX3laNkxjSGc6MQ+

Hopefully, by the time this study runs its course at the end of December we will have over 200 responses, at which time we will post results to the forum.

Thank you for supporting this research.

Jamie R. Anderson

[JRA]

Hi everyone,

Thank you for your continued support   We are now at 180 responses from members of IHD (Transplant Stories) and other transplant message boards. There are still 3 weeks remaining so if you have not yet filled out the survey, you still have a chance to participate.

Please feel free to recommend the survey to others, to tweet it, or to post it to Facebook, etc..

Below is the link to the survey page on the net:

https://spreadsheets.google.com/viewform?formkey=dHkxd0h6QlpLTHFVbUxVX3laNkxjSGc6MQ+

We are well on our way to reaching over 200 responses by the end of December.

Thank you for supporting this research.

Jamie R. Anderson

[JRA]

Hi everyone,

Thought I would bump this topic back up to the top one last time for those who may not have seen it. There are still two weeks remaining to participate in the survey posted above. Last week, we broke 200 responses but hope that many more people have the chance to participate.

When all the results of the survey are collected and analyzed, I will start posting the findings.

Thank you again for your support ~

Jamie R Anderson

[JRA]

 

Hello everyone,

I just wanted to post a note to thank you for your interest and participation. To date, we've collected 230 responses!  Unfortunately we've come to the end of the survey period and on the 31st of December, the links will no longer be active. Therefore, if you have 10 minutes to spare and would still like to participate, now is your chance. For those who are interested in seeing the results of the study, we should have all the data sorted and in a web-friendly format sometime towards the end of January.

Thank you again for everything and hope you have a wonderful holiday season.

Jamie R Anderson

[okarol]

Thanks Jamie. I hope you will post a link to the results when you can. 

[RichardMEL]

Thanks for the bumps so I could see this and put my entry in!