Re: Ethics of user testing and people with cognitive disabilities

In the testing case I posted, this was a person with whom our family has a
long standing relationship, who has no legal guardian, who can decide for
herself whether she wants to participate or not, and who gave permission
for me to test, understood what I was doing and that I would share the
results of the test..

Cheers,
David MacDonald



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On Mon, Jul 11, 2016 at 9:15 AM, lisa.seeman <lisa.seeman@zoho.com> wrote:

> Hi Josh
>
> This is a great thread. I think an issue paper on user testing for COGA
> use groups would be a good idea. Not having any user testing with people
> with cognitive disabilities might have the result that they will never have
> fully useable services.
>
> I have not done a lot of testing, but a technique I have used is to avoid
> any language that suggests the user fails. For example, "can you see how to
> buy shoes" becomes "did the designer make it clear how to buy shoes". In
> other words, the implication is the design is at fault not the user.
> Limiting the amount of fail question to two, however they have been
> rephrased, is probably a good idea as well. I would always end with asking
> them to do tasks they can manage.
>
> Of course, informed consent is always a requirement.
>
> All the best
> Lisa
>
>
>
>
>
>
>
>
> ---- On Mon, 11 Jul 2016 13:14:52 +0300 *<josh@interaccess.ie
> <josh@interaccess.ie>>* wrote ----
>
> [Chair hat off]
>
> In a previous thread the issue of user testing with people with cognitive
> impairments has been brought up. I thought this could be a good time to
> share some of my own thoughts in this area. As some of you may know, I ran
> a user testing lab in the National Council for the Blind of Ireland for
> around 10 years. During that time I ran user tests with a wide range of
> users, not just those who are blind/VIP. In that time I did a small amount
> of testing with people with cognitive impairments, mental health issues
> etc. I found this a difficult group to test with due to my own concern
> about the ethics of doing so properly.
>
> One very strong reservation I have about this whole area is simple. Does
> the user have the ability the objectively separate the tasks they are
> asked to perform in a test (and the natural success/failure when trying to
> completing these tasks) from their overall 'sense of self'? What I mean is
> that will the user be able to realise that their actions are being
> objectively observed without any 'judgement' on their performance?
>
>  I would hate to think that a user would come away from a user test, where
> many tasks were failed (which is great usability information) but feeling
> worse about themselves, or as if _they_ were some kind of failure. In
> short, I think user testing is a bit of a performance, within an
> utterly contrived environment. Some people take to this well, others don't.
>
> This is a very thorny issue but one I want to flag. I don't think testing
> should take place at all without a strong framework about how to deal with
> these sensitive situations. Sometimes you may have to make a call not to
> test, if it isn't in the best interest of the user test participant, even
> if they may be a perfect candidate for 'rich data'. I've made this call not
> to test in the past, and my overall take away was that I am largely
> uncomfortable doing this kind of testing, unless I'm sure it is in the
> participants best interest, separately from whatever the secondary need of
> a project/client is.
>
> Thoughts?
>
> Josh
>
>
>
>