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Re: UPDATE: User research involving persons with mental health conditions

From: lisa.seeman <lisa.seeman@zoho.com>
Date: Wed, 18 Jan 2017 15:33:07 +0200
To: Bernard R.M. <r.bernard@soton.ac.uk>
Cc: "public-cognitive-a11y-tf" <public-cognitive-a11y-tf@w3.org>, "Thad C" <inclusivethinking@gmail.com>
Message-Id: <159b1c618ca.dcfabd997432.2496560194216188851@zoho.com>
That is great Bernard, thanks!

Would you be able to schedule a call at regular  some time, once or twice a month with Thadd and others so we can coordinate and avoid duplicating any efforts?
Maybe send me and Thad any times that we could meet biweekly or once a month that are free.


All the best

Lisa Seeman

LinkedIn, Twitter





---- On Wed, 18 Jan 2017 10:23:56 +0200 Bernard R.M.&lt;r.bernard@soton.ac.uk&gt; wrote ---- 

Hope all is well and that everyone enjoyed their holidays. 
 
It was noted in the meeting minutes that there are some difficulties being updated about the mental health user research work. Apologies for not communicating to the group directly. I wish I could attend the COGA meetings on Monday but as mentioned during my first call to the group, I must attend another long-standing meeting that cannot be changed at the moment. I do follow the email threads nonetheless. 
 
Thaddeus volunteered to contribute on the work surrounding mental health conditions and I have been chatting to him several times by phone and had a few exchanges via email over the last few months about this user research document. On our last call in December before the holidays we discussed how we are going to include PTSD into the user research paper for mental health conditions. Last week Tuesday on the 10th I sent him concrete details about how we can achieve this. Thaddeus replied and confirmed he can action the items (i.e., data collection) relevant to him. It was planned for me to do the analysis afterwards. However, he highlighted an issue yesterday that we have to work on before this work on PTSD moves forward. 
 
The plan surrounding my wider contribution to this work has not changed since agreeing to join the group. I spend 100% of my everyday work on this user research. I plan and conduct research involving people with mental health conditions, analyse the data collected and then present it in primarily two ways: scientific paper and COGA user research document focusing on people with mental health conditions. 
 
I have recently finished collecting data from: 
 
· an expert survey using personas of Web users affected by depression and anxiety where 26 mental health professionals participated; 
 
· interviews with 21 persons diagnosed with depression and or an anxiety disorder; 
 
· interviews with 7 people who have never been diagnosed with a mental health condition as a comparison group to isolate challenges that are not shared across groups; 
 
· usability study involving 5 persons diagnosed with depression and or an anxiety disorder using an online therapist matching service. 
 
I am currently analysing this data and will interrogate the findings and present the final results in three ways: two scientific papers, COGA contribution and an ITU contribution as well. Results from these final two studies will be finalised by March when my PhD ends and will be slowly integrated into the COGA user research document before this time. This will not include the PTSD aspect though. This will take a bit longer. 
 
Last year my systematic review of literature revealed only 13 papers which form this body of research and many do not directly involve persons from this group so there is not much to draw on otherwise in terms of expertise or research. Additionally, preliminary results from the data I recently collected show many new challenges using the Web no one could’ve easily guessed or have previously noted. For example, the reported challenges mostly relate to socio-cognitive deficits (e.g., impaired affect regulation, difficulty processing emotional cues) and not neuro-cognitive deficits (e.g., impaired attention and problem solving). Therefore, directly involving this user group is incredibly helpful when seeking to uncover actual challenges they face on the Web. However, this research takes time. In this case, until March. 
 
My hope is that we produce a user research document which benefits from the valuable input of persons affected by the aforementioned conditions about their actual difficulties and can be confidently used to inform other work within COGA. For instance, when extending COGA’s scope to those at the other end of the spectrum - people without mental health conditions who experience moments/shorter periods of overwhelming grief, sadness, anxiety or stress. This group also faces unaccommodating websites that test their resilience in such moments. For example, when booking an emergency flight at short notice to visit a severely ill relative or making a large last-minute financial transaction online that could result in penalties if past due. 
 
I wish everyone a great week ahead and welcome any feedback and questions. 
 
All the best, 
Renaldo 
Received on Wednesday, 18 January 2017 13:33:40 UTC

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