POZ Community Forums
Main Forums => Living With HIV => Topic started by: Peter Staley on June 28, 2006, 09:23:15 am
-
As posted in today's AIDSmeds newsletter...
The Institute of Work, Health and Organisation in the University of Nottingham in the U.K. is currently undertaking a research project with AIDSmeds.com and we would like to invite you to participate in the study. The aim of the project is to investigate the impact of online support group participation (i.e. forums, message boards, and chat rooms) in the quality of life of people living with HIV/AIDS. We would like to receive feedback from you about your experiences of receiving online support and how it affects your life. Your response will help us to understand the experiences and needs of HIV/AIDS individuals who participate in online support forums. Results would be published in academic journals and we believe they would serve as important tools in guiding the design and evaluation of intervention initiatives to improve the quality of life of people living with HIV/AIDS through effective online support.
The survey won't take long to complete and the target is less than 25 minutes. Most of the questions can be answered with a click. If you have been HIV-positive for at least one month and are aged 18 or above, please click the link below to access the survey. You views will be treated in strictest confidence and we will not identify you from your response.
http://www.surveymonkey.com/s.asp?u=800992277081 (http://www.surveymonkey.com/s.asp?u=800992277081)
It would be great if you could also help us to forward the link to other HIV-positive individuals you know – the more responses we receive, the better we know how to improve your life. Should you have any enquiries, please don't hesitate to contact Phoenix Mo at lwxkhm@nottingham.ac.uk. Thank you very much in advance and we are looking forward to hearing from you!
Peter Staley
Founder
AIDSmeds.com
-
Done Peter, and it took less than 25 minutes to complete.
-
Okie Dokie,
Done and done. It didn't take 25 minutes though.
Mark
-
I even surprised myself by some of the responses.
-
Where's the link to the full study protocol and details of how people with HIV have been consulted in the survey design (University of Nottingham?)
-
Done, I'll take Tim Horn as a thank you ;D :P
-
I did it. It didn't take 25 min. and it was very easy.was glad to help out.
Love,
Wendy
-
Done Peter.........and relatively painless. Glad to participate as always.
Thanks for the opportunity........... :-*
-
done... it was simple.
I'm confused as to why it links to a webpage of AIDSMED.COM (a very generic looking site) at the end of the survey instead of aidsmeds.com.
-
Ditto,
Done here as well.
-
Done here as well !
The Canuck
-
I'm confused as to why it links to a webpage of AIDSMED.COM (a very generic looking site) at the end of the survey instead of aidsmeds.com.
Thanks, Dingo -- I've notified the University of their link error. The f**king owners of "aidsmed.com" refuse to sell the domain to us at anything close to a reasonable cost.
Peter
-
Ditto. Did mine!
Dan
-
So who exactly is Phoenix Mo, cos s/he's not listed as a UoN staff member (a student?) - lwxkhm@nottingham.ac.uk is a non-standard UoN email address.
The survey as it stands contravenes 2 pieces of UK/EU legislation and UK research guidelines, plus it's on a non-secure internet connection which means anyone can see the info. Surevymonkey, not secure, effectively public
All this may not matter 2 hoots to people, but us guinea pigs should know what's what before we click.
Is Prof. Coulson involved?
-
Newt -- you and your conspiracy theories! We checked them out, and it's all kosher.
Phoenix Kit Han MO
Msc in Health Psychology
Project supervisor:
Dr Neil Coulson Neil.coulson@nottingham.ac.uk
However, I'm not familiar with U.K. laws, so feel free to complain to Coulson if you think the survey is unethical in any way.
Peter
-
Got notification in the e-mailed newsletter...done, simple and easy, didn't take 25 minutes, guess I read fast and didn't have to think about answers; always honest here.
-
There's no place for sarcasm in research on HIV subjects and, being a partly gracious and for certain the sexier queer, I will set your "conspiracy theroy" comment aside...
1. This is a student MSc project.
I reckon the rough ride most other student projects get arriving here, the only reason this one is carrying any weight is your reputation, Mr Staley. Most people like to be helpful. I like good ethical standards in research. I do not wash the hands of the shop-keeper after I buy a chocolate bar.
All well and good, then, huffing aside, it's a kosher STUDENT project.
2. As a standard, online surveys collecting personal health, finanancial and psychometric information should be done via a secure internet connection.
People may not care (iindeed, why care, they's not that secure) but it's a UK standard. An important STUDENT learning point.
3. Yes various privacy directives etc have been ignored so I will email Prof C tomorrow. An important STUDENT learning point.
People will make there own minds up about participating. I guess most people with think I'm an arse. Tough I guess, I'll buy a t-shirt with a pic of an arse on it. The whole pic before hand and I wouldn't be so damn prickly (which is of course the right way to be with studies, from a community involvement perspective)
-
I also received notification via the AidsMeds newsletter.
I did also take the survey.
All done! All good
Kelly
-
More than Happy to participate.
-
Done.
It was easy and took way less than 25 mins.
-
Done! That wasn't so bad. ;D
- R
-
That survey made me realize how fortunate I am and how alone I am. All my choice however.
BB
-
I did mine too.
A few years ago I participated in the "Managing Meds" study (not an online study) that was conducted by the University of Pittsburgh School of Nursing. It was a study that looked at why some people were adherent with their meds while others were not. A lot of the questions in the Managing Meds Project were almost identical to the questions in this online survey. So, there was nothing new here for me.
-
Finis! I appreciate the due diligence efforts and affirmations even if after the fact.
-
Why can't I access it?
I double-clicked to the opening page (uNIV. OF Nottingham AIDSMEDS STUDY Introduction), read the intro and then clicked "NEXT". NOthing happens. I tried this morning and tonight from both here (Forum) and from the Aidsmeds Newsletter. Nothing happens. If no one else is having problems, I guess it's my browser?
I'll try again tomorrow and see what happens.
robt
-
Sorted,
John(UK)
-
Done, good refresher for me.
-
.
-
Newt's concerns are being answered via email, as will yours (I hope).
-
I forwarded the link etc to the UK-CAB (activist) mailing list and at least a couple of people will take up points on methodology, and, er, relevance of questions direct with the researcher/supervisor. Phoenix Mo was kind enough to email me the protocol and I have sent my comments direct.
People who want my take on the study method as it stands PM me, but I warn you, I am biased, I think its full of holes.
An important outcome of me bitching is discussion of forming a UK panel to assist/review/consult UK students planning to do research on people with HIV.
- matt "8 hrs Glasgow-Gatwick no food, no drink, are you kidding BA?" the newt.
Now playing - some hip-hop track or other