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TransplantBuddies.org Forums » Buddies Blogs » How has this forum helped you as a recipient, donor, or family member? « Previous Next »


An open invitation to donors, recipients and family members

  Thread Original Poster Last Poster Posts Pages Last Post
Survey is now closedHostess Rise'Hostess Rise'01-06-11  01:51 pm
Face-to-face Vs online groups... which do you prefer?JRACiscoKidney0712-14-10  08:39 pm
Forum Leaders -survey for this websiteOrganic GalOrganic Gal12-05-10  02:32 pm
What kinds of research is lacking for recipients, donors and caregi...JRAOrganic Gal12-05-10  11:43 am
Survey ResultsJRADAP112211-27-10  08:44 pm
Co-link analysis... what's that?JRAJRA11-22-10  08:21 am
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Author Message
JRA
Member
Username: Researcher

Post Number: 5
Registered: 11-2010
Posted on Friday, November 12, 2010 - 10:47 am:   Edit Post Delete Post Print Post

An open invitation to everyone in the Transplant Buddies community

To all donors, recipients, and family members. We would like to invite you to participate in a short survey to learn more about your experiences with online transplant support communities. In particular, we are looking at how your participation in these groups has empowered you as patients, helped you deal with the pain of loss, or helped you share the joy of giving life. Please follow the link to help support research on transplantation communities. Thank You!

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 - 20 minutes to complete.

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=dHE0bkNXNGJxcUp4SWx3VUgxUi1lQmc6MA

FAMILY MEMBERS https://spreadsheets.google.com/viewform?formkey=dG5sWWFheHB6aEZSTU5lZ2RrUnp3YlE6MA

RECIPIENTS https://spreadsheets.google.com/viewform?formkey=dFNCalJITXBDakFVamoxVTJOanRQcUE6MA

Thank You in advance for your interest and participation!

Jamie R. Anderson
Doctoral candidate
Kyoto University Graduate School
Department of Human and Environmental Studies
Rise
Board Administrator
Username: Rise

Post Number: 14914
Registered: 05-2003
Posted on Friday, November 12, 2010 - 02:31 pm:   Edit Post Delete Post Print Post

Thank you Jamie

I encourage all to participate in this very quick and easy survey.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant


Join Facebook

Questions- Contact Hostess Rise

My Photos on Transplant Friends

Rita
Forum Leader
Username: Rita

Post Number: 445
Registered: 06-2003
Posted on Tuesday, November 16, 2010 - 08:45 pm:   Edit Post Delete Post Print Post

Hi, I did fill out your survey, however because I didnt feel comfortable answering my income it would not accept my participation without it. Sorry. Wish you the best.
Rita
Kidney Transplant 9/95
New York Hospital, NY
Dr. Wang

Rita's Page on Transplant Friends- see her photos
Organic Gal
Board Administrator
Username: Rise

Post Number: 14962
Registered: 05-2003
Posted on Wednesday, November 17, 2010 - 04:55 pm:   Edit Post Delete Post Print Post

Hi Jamie

I had no idea that we would have to fill out the income part. There was another member who sent me a private message regarding the income.
Can you take out that part please?

be well
Rise'
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Si Pham MD, Professor of Surgery---Jackson Memorial Hospital
Anas Hadeh MD, Cleveland Clinic Cystic Fibrosis Consultant


Join Facebook

Questions- Contact Hostess Rise

My Photos on Transplant Friends

JRA
Member
Username: Researcher

Post Number: 6
Registered: 11-2010
Posted on Wednesday, November 17, 2010 - 05:30 pm:   Edit Post Delete Post Print Post

Hi Rita,

Thank you for bringing this to my attention. I had all of the questions in the form set to "required" to let people know when there was any missing information that they might have unintentionally skipped over. I understand how income can be a sensitive topic so I have gone back in and edited all of the forms to no longer require an answer. I'm sorry you were not able to complete the form earlier but I hope that you are still interested in the study and willing to participate.

Best Regards,
~ Jamie
JRA
Member
Username: Researcher

Post Number: 15
Registered: 11-2010
Posted on Tuesday, November 23, 2010 - 08:31 am:   Edit Post Delete Post Print Post

Just a quick update on the survey progress:

In the past two weeks, we have received 75 responses from members of Transplant Buddies 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=dFdVWTBCbjRqMHN2YjVoVFM3U1hVSlE6MA

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
Member
Username: Researcher

Post Number: 20
Registered: 11-2010
Posted on Friday, December 03, 2010 - 09:36 pm:   Edit Post Delete Post Print Post

Hi everyone,

Thank you for your continued support. We are now at 180 responses from members of Transplant Buddies 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=dFdVWTBCbjRqMHN2YjVoVFM3U1hVSlE6MA

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
eccoblue
Forum Leader
Username: Eccoblue

Post Number: 1701
Registered: 05-2008
Posted on Saturday, December 04, 2010 - 06:42 pm:   Edit Post Delete Post Print Post

Great survey! Highly recommend it. Looking forward to the results.

Heart and Liver Tx at Cedars-Sinai on 02/01/2007
Email Kelli
Not So Brave on Amazon

RD Video of Kelli

Fall seven times, stand up eight - Japanese proverb

Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
JRA
Member
Username: Researcher

Post Number: 26
Registered: 11-2010
Posted on Sunday, December 05, 2010 - 10:35 am:   Edit Post Delete Post Print Post

Thanks Eccoblue ~

Glad to hear you liked it.

PS - I was going to write your proverb for you in Japanese but the board doesn't display kanji. Anyways, this is how you pronounce it ------> Nana korobi, ya oki ~ Fall 7 times, stand up 8!
eccoblue
Forum Leader
Username: Eccoblue

Post Number: 1704
Registered: 05-2008
Posted on Sunday, December 05, 2010 - 12:46 pm:   Edit Post Delete Post Print Post

Nana korobi, ya oki - I need to learn that! On the subject of Japanese, I like Anime art a lot. Also, Haikus are fun to write.

War and violence
they are for man not nature
yet flowers are near

I picked it up
from a wildflower one day
a small butterfly

I forgot to add something else to the comments on the survey . As much as I like the positives of Transplant Buddies ( My favorite place on the internet) there is something that bothers me emotionally and that is when you develop relationships with other members and become friends and they pass away, that is the sad part to all the happy parts. I'm grateful that this rarely happens, but I think of them a lot.
Heart and Liver Tx at Cedars-Sinai on 02/01/2007
Email Kelli
Not So Brave on Amazon

RD Video of Kelli

Fall seven times, stand up eight - Japanese proverb

Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
JRA
Member
Username: Researcher

Post Number: 27
Registered: 11-2010
Posted on Tuesday, December 14, 2010 - 08:13 pm:   Edit Post Delete Post Print Post

Hi everyone,

Thought I would bump this topic back up to the top of the list 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.

Thank you again for your support ~

Jamie R Anderson
JRA
Member
Username: Researcher

Post Number: 34
Registered: 11-2010
Posted on Saturday, December 25, 2010 - 10:03 pm:   Edit Post Delete Post Print Post

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

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