[NIFL-LD:4630] RE: Spanish Screen - request for help

From: Nancie Payne (napayne@worldnet.att.net)
Date: Fri Mar 11 2005 - 13:22:22 EST


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From: "Nancie Payne" <napayne@worldnet.att.net>
To: Multiple recipients of list <nifl-ld@literacy.nifl.gov>
Subject: [NIFL-LD:4630] RE: Spanish Screen - request for help
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Glenn,
I understand the dilemmas, however, whenever humans are involved, especially
in surveying such as this, one needs to be up front and ethical.  Better to
do it the right way in the beginning than have the data -- even general data
-- viewed as incorrectly collected or unethically gathered.
Nancie

-----Original Message-----
From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of Glenn Young
Sent: Friday, March 11, 2005 5:55 AM
To: Multiple recipients of list
Subject: [NIFL-LD:4628] RE: Spanish Screen - request for help


To Nancie and Varshna

Prehaps research project is the wrong term ... And prehaps it is .. Maybe
you can help

So the question is simple ... 

	How many people given the screen scored "at-risk"

	Be delivered on the front line by Spanish Speaking persons

	Report would be in gross numbers -- x number of screens given ... Y
number of 	people scored "at" risk ..

No other demographic or such break down ... Just trying to get some gross
numbers to start ... So we can draw attention more to the issue.

We would run the numbers through LDA of Western New York ... And to SUNY 

I am fully aware that there is limited resources to follow-up (both money
and professionals) ... That is the problem I am trying to address with the
"research" .. And so if we can't follow-up with good diagnostics ... I don't
want to set up either the programs or consumers with expectations they can
not fulfill ...

That is why I am suggesting that the screen be used to try and simple see
how many "score " "at risk" ... 

So perhaps this is just "data collection" rather then "research project" ...


I am not trying to get around "human research protocols ... But I we don't
want to put programs or people at risk for things we can not deliver ... But
we need to know what is going on .. So it a "chicken and egg" issue? 

Suggestions?  thanks

Glenn Young
505 East Braddock Rd # 608
Alexandria VA 22314
703-684-1750
gyoungxlt@comcast.net
 

-----Original Message-----
From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of Varshna
Narumanchi-Jackson
Sent: Thursday, March 10, 2005 7:15 PM
To: Multiple recipients of list
Subject: [NIFL-LD:4626] RE: Spanish Screen - request for help

Nancie and Glenn,

Thanks for the follow-up and feedback.  Glenn, could you please be more
specific about the parameters of your research project?

What are the research questions you are testing?  What protocols would you
suggest programs follow?  How would you want the data reported?  Who gets
the data, and how would it be analyzed?  How many would constitute a
sufficient sample size? Would the results be published...

Sorry to be obnoxious, but I think more information at the front end would
offer programs a better opportunity to evaluate the benefits of
participation.  Texas has a sizable and politically active Spanish-speaking
population, so it will be necessary to weight the benefits against the risks
of engaging participants without informed consent and without backing from a
major research institution.

Thanks, Varshna.

on 3/10/05 5:18 PM, Nancie Payne at napayne@worldnet.att.net wrote:

> Hi Glenn and all reading this message,
> 
> Unless I read the information incorrectly I believe you must inform 
> the participants in a research project that they are being involved in 
> a research project and the type of project -- I believe it's called 
> "Informed Consent" and it is part of the required protocols under the 
> code of ethics and right to privacy process when involving human subjects.
> 
> -----Original Message-----
> From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of Glenn 
> Young
> Sent: Thursday, March 10, 2005 10:07 AM
> To: Multiple recipients of list
> Subject: [NIFL-LD:4621] RE: Spanish Screen - request for help
> 
> Thanks for the question ...
> 
> Since this would be anonymous ... There would be no issue for the 
> program as far as follow up ... Research such as this,  is often 
> conducted with no implied follow-up or the participants ... Since the 
> participants would not know what this is about ... There should be no 
> confusion ... They can be told that this is just a survey being 
> conducted on past education and other history ... For data collection ...
> 
> I think there should be NO statement in anyway to the participants 
> that this is a screen for learning disabilities or anything of the 
> sort ...  Since many of them will not know what LD is, and this would 
> cause confusion, and also many may have a negative connotation of the 
> term "disability" which could get a lot of false negatives ...
> 
> Also .. If we told them it was a LD screen, then, your right, they 
> would expect some kind of follow up ... Or want to know the results 
> ... So that is why, for this purpose ... Getting some "gross" numbers, 
> we need to keep it simple, and anonymous and with out participants knowing
what it is ...
> 
>  
> I hope this answers the question ..
> 
> Glenn Young
> 505 East Braddock Rd # 608
> Alexandria VA 22314
> 703-684-1750
> gyoungxlt@comcast.net
>  
> 
> -----Original Message-----
> From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of Varshna 
> Narumanchi-Jackson
> Sent: Wednesday, March 09, 2005 8:02 PM
> To: Multiple recipients of list
> Subject: [NIFL-LD:4619] RE: Spanish Screen - request for help
> 
> Glenn,
> 
> Aren't you worried that such screening without appropriate follow-up 
> might be confusing or upsetting to participants?  I would wonder why I 
> am being asked a bunch of questions if nothing comes of it.  If I were 
> to recommend this idea to some program directors, what would be a safe 
> response to the question?
> 
> Sincerely, Varshna.
> 
> 
> on 3/9/05 10:34 AM, Glenn Young at gyoungxlt@comcast.net wrote:
> 
>> The only thing that would be reported from the data
>> collected is that the   screen was administer to X number of
>> persons, and that Y number of persons   were found to have scores
>> based on the screening design that indicated there   could be LD.
>> 
>> 
>> If there is actually a significant finding of those at risk for LD 
>> through this screen, it may stimulate additional research in this 
>> area. (And any report on the findings will be filled with caveats on 
>> the
> whole issue.)
> 
> 
> 



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