5-stage process for social media change at #CSUN12

Interview Participant Using Social Media and Assistive Technology
Interview/observation participant using social media and assistive technology

Short Title: aOSN-cp model to assist social media change

Strap line: An aOSN-cp model to support online social network users with cerebral palsy when providers introduce change.

Conference: 27th Annual International Technology and Persons with Disabilities Conference (CSUN’12)

Type: Lecture | Session Length: 60 minutes

Date/Time: Friday, March 2, 2012 – 4:20 PM PST

Location: Madeleine CD, 3rd Floor

Session webpage: http://bit.ly/MakaylaLewis-CSUN12

Internet use in the United Kingdom is almost the highest in Europe, with over 65% of households accessing the Internet […]. Forty-nine percent of these users are using online social networks (OSNs) like Facebook, Twitter, Bebo and YouTube and are now making over 24 million visits a month [1, 2, 3]. Nevertheless, OSNs are often directed at people without disabilities. Existing human-computer interaction (HCI) literature suggests that OSNs have the potential to help people with cerebral palsy (cp) to overcome their mobility, access and communication limitations to enable communication independence [4, 5]. As conventional communication methods like face-to-face communication, telephone communication and text message communication are often difficult to use and can limit the opportunities for these users to engage in successful socialization […]. Therefore people with cp often see online communication especially OSNs as an attractive alternative [5, 6]. In spite of this, there have been no studies that solely look at OSN experiences and challenges faced among users with cp. The goal of this research was to address this gap in the research to make this community visible.

An exploratory interview study was carried out. The study explored the experiences and challenges faced when users with cerebral palsy use OSNs. Fourteen semi-structured interviews were carried out consisting of participants with different types of cp. The study found, among other factors, that abrupt and frequently changing online social networks slowed down and or prevented use [4]. For example during September 2011 Facebook.com introduced three functional changes that included a revamped friend lists, real-time news ticker and a subscribe button. Subsequently during the following month further changes that included a major overhaul of user profiles, new applications for playing music and watching videos were deployed. Such changes often affect assistive technology resulting in users relearning the number of clicks when using switches, making interacting with OSNs time-consuming. In spite of this, the study also identified that the technology is a vital way for users with cp to communicate with friends and family and would continue to play a key role within their lives.

To further explore the affects of abrupt and frequent changing OSNs a longitudinal web 2.0 monitoring and analysis study was carried out. The study identified how OSN Twitter.com changes, specially # Old Twitter to # New Twitter, are introduced, their affect on users, and the factors that encourage change acceptance and non-acceptance. More than 950,000 tweets mentioning #(hashtag) New Twitter were posted between September 2010 to February 2011, however the 60-minute lecturer will focus on 600 tweets from key discrete occasions: peaks. The results of the study were used alongside common change management approaches and theories to develop an innovative 5-stage process for online social network change (aOSNcp) for OSN change agents to follow. The process defines the requirements for successful online social network change including the OSN change agent responsibilities before, during and after the change.

The lecture will summarize the exploratory interview study; introduce the key inhibiting factor and the examination of New Twitter; and present the aOSN-cp process as a method to assist online social network providers during user interface change process without alienating users with cp. A video of Makayla’s lightning talk “Developing a 5-stage process for online social network change: a focus on users with cerebral palsy” at January’s Web Accessibility London meetup has been made available to summarize this lecture.

[vimeo http://vimeo.com/37237102]

References

[1] eNation reports – Social networking sites lock out disabled users – AbilityNet. Available: http://www.abilitynet.org.uk/enation85 [1/28/2011, 2011].

[2] DUTTON, W.H., HELSPER, E.J. and GERBER, M.M., 2009. The internet in Britain: 2009. Oxford Internet Institute.

[3] OFFICE FOR NATIONAL STATISTICS, 2009. Internet Access 2008 Households and Individuals. Office for National Statistics.

[4] LEWIS, M., 2010. Cerebral palsy and online social networks, Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility, 2010, ACM, pp. 243-244.

[5] BALLIN, L. and BALANDIN, S., 2007. An exploration of loneliness: Communication and the social networks of older people with cerebral palsy. Journal of Intellectual and Developmental Disability, 32(4), pp. 315-326.

[6] DOBRANSKY, K. and HARGITTAI, E., 2006. The disability divide in Internet access and use. Information, Communication & Society, 9(3), pp. 313-334.

[7] THOMAS, D.R., 2006. A general inductive approach for analyzing qualitative evaluation data. American Journal of Evaluation, 27(2), pp. 237.

Contributing to #BBCOuch! Talk Show #72: Social Media [Audio]

Last month I contributed to a podcast by BBC Ouch! a talk show that discussed how disabled people (including my research population: cerebral palsy) use social media:

How are disabled people using social media? we’re joined by uber tweeter, Facebooker and campaigning blogger Lisa Egan; startup internet businessman Martin Sibley; and PhD student Makayla Lewis who is researching accessibility of social media for people with cerebral palsy. – http://www.bbc.co.uk/blogs/ouch/2011/06/ouch_talk_show_72_social_media.html

Recording at BBC Broadcasting House was an enjoyable and insightful experience, and I hope you find the podcast useful:

Note: 37.43min podcast also includes other BBC Ouch! items

Download: .mp3 at http://downloads.bbc.co.uk/podcasts/radio/ouch/ouch_20110628-0915a.mp3 or .rtf transcript at  http://www.bbc.co.uk/ouch/podcast/transcripts_2011/ouch_talk_show_transcript_ep72.rtf

p.s. as you listen to/read this blog I have still not listened to it, too nervous 🙂 

Inside #NewTwitter at #HCID2011

The affects of changing social networks on people with motor disabilities


When: 19 April 2011 at 1PM – 1.40pm

Where: HCID Open Day 2011 at City University London

Free tickets: http://www.eventbrite.com/event/1365743977/estw

Today, social networking websites like Facebook, MySpace and Twitter have emerged as leaders and draw in hundreds of millions of international users. In the UK 49% of Internet users are using social networks however these websites are often directed at persons without disabilities. Existing HCI literature suggests that social networks have the potential to help people with cerebral palsy to overcome their mobility, access and communication limitations to enable communication independence.

Considering an exploratory interview study that explored the experiences and challenges faced when people with cerebral palsy use social networks (see: http://portal.acm.org/citation.cfm?id=1878852 for ASSETS’10 paper). It identified that abrupt and frequently changing social networks were the most challenging often slowed down or prevented use. Such changes can often affect assistive technology resulting in users re-learning the number of clicks when using switches. Statements like :

“Carer: with the switch she knows how many times she is going to click and press there and there … they are changing she has to learn new … it makes time slow because they keep changing. User: yes” which are often reported by users and reiterated by their carers.

These issues often make interacting with social networks time-consuming. In spite of this, the study recognized social networks as a vital way for these people to communicate and would continue to play a crucial role within their lives. To further explore the effects of abrupt and frequent change within social networks a qualitative study that explored Twitter.com change approach from #OldTwitter to #NewTwitter was carried out. Almost 1 million tweets mentioning #NewTwitter were posted between September 2010 to February 2011. However this presentation will focus on the pilot study that analyzed 600 tweets based on discrete occasions. The study identified the change approach used by Twitter.com, global peaks, moreover the change acceptance among its users, together with positive and negative aspects of #NewTwitter. The findings from the pilot study formed the basis for a main study were a further 18,100 tweets were examined. The purpose of this research is to develop a change approach for social networks that has minimal affect on users with cerebral palsy.

During the presentation Makayla Lewis will briefly provide a background of her PhD research; findings from exploratory interview study; social media monitoring tools; the role of the qualitative analysis approaches and software and pilot study findings. She will end the presentation by listing solutions to challenges faced when researching users with motor impairments.

[Mini Blog] 2010 in Review

With 2011 now underway I thought I would briefly summarise 2010. It was a busy yet creative year were I predominately focused on my PhD research, this seemingly ENDLESS task will likely consume much of my time this year. I achieved a lot: completion of 2 studies: interviews and observations including research ethnic’s (and we all know how lengthy this can be), MPhil to PhD transfer examination, countless paper submissions which led to a major conference acceptance, and constant academic reading among other items. 2010 was also a year for sharing my research and reaching out to charities and disability and accessibility community via presentations and seminars, HCID CP Day, demo session and most surprisingly an unconference. These opportunities enabled me to meet and work alongside fantastic people whom had different experiences and insights of which I highly value. 2010 also presented the opportunity to regularly volunteer at user-led organizations directed at young adults with disabilities, learn British Sign Language (BSL) and par take in charity running e.g. Sports Relief 3 Mile run, Race for Life 5k and British 10K run. Furthermore, personally 2010 allowed me to expand on some of my ‘odd’ interests mainly concerning all-things Apple, Wii gaming, Star Wars, Vampires (books, films and TV shows etc.) and most importantly Guinea Pigs. I can now officially state that most, if not all, of my social media friends are aware of these ‘interests’ and are likely frustrated with my constant chatter; but having obtained a overshare badge on foursquare, this is unlikely to change – sorry :). But 2010 also presented challenges e.g. constant Crohn’s disease flare ups, a family bereavement, a distressing motorbike accident, being a carer with limited support etc., such challenges did not prevent me from pushing forward but provided strength and persistence – these acquired attributes are highly valued and will be undoubtably drawn on in the coming year. I hope that 2011 will bring exciting web accessibility research and technology,  new apple products 🙂 and most importantly happiness and success. I will end this mini blog by wishing all those who read this a prosperous 2011.

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Experiencing online social networks with #cerebralpalsy at #ASSETS10

After a highly enjoyable, yet lengthy, process of collecting interview data that investigated computer, internet and online communication use among adults, age 18 and above, with cerebral palsy (2009/10). I began the publication process (central to all PhDer’s) consisting of countless presentations, seminars, talks, round table discussions etc. however an “academic” conference paper was proving illusive. Until July, when I was presently surprised that my work on motor disabilities concerning accessible social media appeared to intrigue #ASSETS10 (The 12th International ACM SIGACCESS Conference on Computers and Accessibility). I was awarded an ACM SIGACCESS Scholarship to attend the conference and my poster paper “cerebral palsy and online social networks” was accepted. This coming Monday (25 October 2010) during poster session 1, I will be presenting a poster concerning my 2009/10 study, were I will discuss:

… the experiences and challenges faced when people with cerebral palsy use online social networks (OSNs). Fourteen interviews were carried out consisting of participants with different types of cerebral palsy. The study identified the reasons for use and non-use and also discovered key themes together with challenges that affected their experiences. For example abrupt and frequently changing online social networks were reported to slow down or prevent use… In spite of this, participants reported that OSNs were a vital way to communicate, and even though these themes and challenges are occurring, they indicated the technology would continue to play a vital role within their lives. To read more about my work please go to: http://portal.acm.org/citation.cfm?id=1878803.1878852

ASSETS10 Cerebral Palsy and Online Social Networks Poster
#ASSETS10 Cerebral Palsy and Online Social Networks Poster

As #ASSETS10 appears to promote itself as a forum concerning “computing and information technologies to help persons with disabilities and older adults” I look forward to engaging with said community through discussions, innovative demonstrations and hopefully “engaging” presentations.

A follow-up blog to follow, watch this space.

iPad, can it benefit the cerebral palsy community? (@cityuni_hcid Demo Session)

Centre HCID using iPad
@cityuni_hcid researchers trying out Tap Tap Radiation

With a To-Do list that increases daily,  I often demote tasks that aren’t directly related to my PhD, unfortunately this has been one of those tasks. I was asked to write a blog about a demo session I ran at @cityuni_hcid on 8th June 2010, better later than never I guess.

— On May 28th 2010 I brought my iPad to @cityuni_hcid were it sparked considerable interest, I suspect it was because at the time it was one of the very few within @CityUniLondon. For the next week I found myself answering the same questions: what do you use it for? what sort of apps are available? is it worth spending £427+?. As a result, I decided to run a small demo session inviting @cityuni_hcid researchers to try the iPad and ask questions all in one go.

To ensure the session was interesting, esp. for researchers waiting to use the device,  the following was asked: iPad, can it benefit the cerebral palsy community?. It’s purpose was to enable the researchers to identify potential apps and or areas the iPad could be used to benefit users with cerebral palsy. To stimulate discussion I carried out an impromptu study that observed 2 iPad users with cerebral palsy. Photos and video clips were recorded via my iPhone 3GS and littered throughout the @cinterationlab. Unsurprisingly, the video clips appeared to encourage discussion more so than the photo’s, so I thought I would share it with you…

(Right) Photo's of the 2 iPad users with cerebral palsy using various apps and iPad accessories. (Left) A list of some of the discussed benefits.

Some of the benefits identified included: rehabilitation e.g. PocketPond app increased dexterity over the course of the observation; eLearning e.g. iBooks app and Memory Cards app provided independent learning; independent input especially when shopping (inbuilt Safari) and communicating was discussed by both participants as key to their iPad use; arts e.g. Granimator app  provided creativity and obviously entertainment e.g. Need for Speed Shift app.

There are many other benefits discussed and considerably a lot more that I can think of now, but it would be interesting to know what you think: iPad, can it benefit the cerebral palsy community?. Please feel free to leave a comment.

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Incorporating your research when charity fundraising

Today I received an email from Waitrose Clerkenwell informing me that @helenasustar and I had received 30% of a £1000 pot from their Community Matters scheme for Scope Charity, raising our fundraising total to over £550. My response was simply “WOW”. Since receiving the email I have been thinking back at our fundraising journey. So, for my 1st blog I thought I would share the experience.

It started with a tweet in January from @ScopeEvents asking for Asics British 10k runners. I tweeted back “I’m up for it” without hesitation, I suppose it was because Scope is a charity that’s always pulled on the strings of my heart i.e. being a care giver to a parent with cerebral palsy. I generally believe that running for a marathon, 10k or 1k is often enjoyed as a shared experience and so challenged @helenasustar to run with me. Our only challenge other than training for the run was to raise at least £100 each. We started on the obvious routes: asking friends and family for sponsorship and setting up Virgin Money Giving webpages. However, we were struggling to reach our goal, this was primarily contributed to our busy schedules and the demanding nature of our respective PhD’s. During mid-February our worrying began to set in with questions like “what are we going to do?” “is this actually possible?”. The answer was simple: link the fundraising to my PhD and have an event that would bring together City University London students, researchers and staff within a fundraising environment to raise awareness of the requirements of people with cerebral palsy when using web technology (hmm… maybe it wasn’t so simple). To add pressure to this, I decided to link the event to my MPhil to PhD transfer examination. In reflection I was just adding fuel to the already burning fire – 1st lesson learnt: Don’t over complicate things. This was promptly removed, thanks to the Ash Cloud leaving my examiners stranded in US . The fundraising event, now known as the “HCID Cerebral Palsy Awareness Day” planning went underway and the stress gradually built up and on 23rd April was happily washed away. I personally feel the day was a hit, so much so I forgotten the stress that came to produce it, or maybe I am choosing not to remember it.

Anyway, I feel the event was rather different, we asked the ‘end-users’ to tell the story and use my research to enhance it. It began with awareness posters being displayed alongside an art exhibition by Zoe Kumaramangalam (a then unknown graphic artist with cerebral palsy who used photoshop alongside assistive devices such as pointers and screen readers, to create inspiring works of art). Her message to visitors was simply: “I have cerebral palsy and I am independent”.

Collection of Art
Centre for HCI Design has never looked so colourful
Posters providing visitors with information about the motor disability

Visitors were also given the opportunity to view posters, outlining my research findings, that littered the walls and talk to web end users (from Action Disability Kensington and Chelsea) about their technology needs and the barriers they face. The day ended with us selling more than 200 raffle tickets totally £264.80. On hearing the success of the event Waitrose contacted me and offered to further support the fundraising by including us in the Community Matters scheme, now taking our total to £569.80.

User profiles posters
Extracts from my research incl User Profiles / User Personas.

Now reflecting, I must say incorporating one’s research alongside a related charity can generate research interest and sponsorship; and so I recommend others to follow suit especially when such charities help researchers to obtain participants. It’s a nice way to say thank you.

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