Cerebral palsy, online social networks and change

In 2011, 19.2 million households in the United Kingdom had access to the Internet. Online social networks (OSN) such as Facebook, Twitter, MySpace, Bebo and YouTube have proved to be the most popular Internet activity (Office of National Statistics, 2011). 49% of these users have updated or created an OSN profile and are making over 24 million visits a month (Dutton, 2009). These websites are often directed at a broad market i.e. people without disabilities. Unfortunately people with disabilities, especially those with physical impairments, often have a greater risk of experiencing loneliness than people without a disability as a result of their mobility, access and or communication impairments. Conventional communication methods such as face-to-face communication, telephone communication and text message communication are often difficult to use and can limit the opportunities for people with disabilities to engage in successful socialisation with family members and friends (Braithwaiteet al, 1999). Therefore people with disabilities can often see online communication, especially OSNs, as an attractive alternative. Previous studies such as Braithwaite et al(1999), Ellis and Kent (2010) and Dobransky and Hargittai (2006) suggests that OSNs are opening a new world to individuals with disabilities. They help these individuals, especially those exhibiting lifelong physical challenges to carry out social interaction which they would otherwise not be able to do within the analogue world. However due to inaccessible features presented in the technology for example features requiring JavaScript, hard-coded text size and Captcha (AbilityNet, 2008; Cahill and Hollier, 2009 andAsuncion, 2010) access to OSNs is often difficult. The overarching purpose of this PhD research is to understand the experiences and challenges faced when people with the physical disability cerebral palsy (cp) use OSNs. It is estimated that 1 in 400 children born in the UK is affected by cp (Scope Response, 2007). The disability can present itself in a variety of ways and to varying degrees. There is no cure for cp, however management to increase social interaction especially through technological innovations is often encouraged (United Cerebral Palsy, 2001; Sharan, 2005 and Colledge, 2006). Previous studies such as AbilityNet (2008), Cahill and Hollier (2009), and Boudreau (2011) have explored mainstream OSNs use from the perspective of users with disabilities, i.e. blind and visually or cognitively impaired, but have placed great emphasis on investigating inaccessibility of OSNs without involving these users. Other studies such as Manna (2005) and Belchiorb et al (2005) have used statistical methods such as surveys and questionnaires to identify Internet use among people with unspecified disabilities. Conversely Asuncion (2010) has taken a broader approach involving OSN users using high-level taxonomies to classify their disabilities, and Marshall et al (2006) focused on a specific disability type, cognitive impairments, without considering the variety of limitations present within the disability. Other studies such as Pell (1999) have taken a broader yet more specific approach and looked at technology use, especially computer and assistive technology among people with physical disabilities, where only 7 out of 82 surveyed had cp. Whereas Braithwaiteet al (1999) focused on individuals with disabilities, where most were classified has having a physical disability. However the study does not explicitly look at OSNs but rather at online social support within forums for people with disabilities. Studies such as these have not involved the users; defined what constitutes disability or focused on cp without encompassing other disabilities, making it impossible to identify the requirements of OSN users with cp. Initially this PhD research explored the experiences and challenges faced when individuals with cp use OSNs. Fourteen interviews were carried out consisting of participants with variations of the disability. The study identified the reasons for OSN use and non-use and also discovered key themes together with challenges that affected their experiences. This work was followed by an in-context observational study that examined these individuals context of use. The study identified the OSNs and assistive technology used, tasks carried out and users feelings during interaction. As a result of these studies it was determined that changing OSNs prevented and or slowed down these users ability to communicate online. Previous work within human-computer interaction and other disciplines such as software engineering and management science, change is often discussed during software development and is restricted to identifying scenarios and tools that assist change management within information technology (Jarke and Kurkisuonio, 1998). Studies such as these have not considered change deployment or its affect on users, though within HCI such an understanding is limited. Other disciplines i.e. psychology and social sciences have looked at change deployment. Theorists such as Lewin (1952), Lippett (1958) and Griffith (2001) attempt to offer solutions. However no one theory or approach is widely accepted and contradictions, adaptations and exclusions are continually being made. Conversely Woodward and Hendry (2004) and By (2007) have attempted to contend with these difficulties specifically stress as a result of change, believing that if change agents are aware of what an affected individual is thinking during the on set of change it will help to minimise or prevent damage. Studies such as these have focused on software development or organisational change from the perspective of developers or employees, they have not considered OSNs or individuals with cp. To fill this gap a longitudinal OSN monitoring and analysis study was carried out. The study identified how OSN changes are introduced, their affect on users, and the factors that encourage change acceptance or non-acceptance. The study was divided into three studies: two studies investigating realworld examples of OSN change by observing the actions of change agents (Twitter.com and Facebook.com) and their users reactions to the change process. A third study that asked OSN users about their experiences of OSN change was also carried out. A by product of these studies was a unique way of displaying OSN change and user acceptance on a large scale using a infographic and an inductive category model that can be used to examine OSN change. The findings from the five studies were then distilled alongside identified change management approaches and theories to develop an five-stage process for OSN change for change agents to follow. The process defined the requirements for OSN change including the change agent responsibilities before, during and after the change

‘They think I’m really cool and nice’: The impact of Internet support on the social networks and loneliness of young people with disabilities.

Published version made available in accordance with Publisher copyright agreement.Today, young people use the Internet for social networking, learning and recreation. Young people with disabilities have fewer friends and reduced social networks. The aim was to investigate the effectiveness of one-on-one training to increase the use of the Internet by young people with disabilities to enhance their social networks and reduce loneliness. Eighteen young people aged 10-18 years with cerebral palsy, physical disability or acquired brain injury completed a social networks inventory and level of loneliness measure. Participants received assistive technology and training at their home to learn to use the Internet for building social networks. Post intervention testing revealed that the number of online communication partners increased significantly; however, there was no difference in measured levels of loneliness. Future research with larger number of participants with disabilities needs to be followed up longitudinally including investigating the meaning and role of online social connections for this grou

How I use the internet and online social media: experiences of young people who use Augmentative and Alternative Communication (AAC)

This thesis addresses a specific gap in the literature base regarding the self-reported experiences of using the internet and online social media by adolescents and young adults (young people) who use augmentative and alternative communication (AAC) within the UK. The research took a socially constructivist approach and used a qualitative methodology to conduct semi-structured interviews with twenty-five young people (aged 14-24) with complex communication needs. The data was collected over a period of eighteen months within a mainstream school, two specialist schools, four specialist colleges and an adult residential centre. The study is based within the context of adolescent development for young people who use AAC. Peer relationships are important to adolescents (Helseth & Misvaer, 2010) and Smith (2005) identified establishing friendships is difficult for young people who use AAC in light of their physical and complex communication challenges which increases the risk of loneliness. Using online communication technology can help mitigate feelings of loneliness with people who use AAC (Cooper, Balandin & Trembath, 2009), although significant barriers for access have been identified (McNaughton & Bryen, 2007). The views of young people who use AAC are under-represented on the topic of the internet and online social media. There are important legal obligations to seek the views of young people with disabilities (Article 12, United Nations Convention on the Rights of the Child, 1989; Article 21, United Nations Convention on the Rights of Persons with Disabilities, 2006) but progress has been slow to include the voices of young people with significant communication impairment (Morris, 2003; Rabiee, Sloper and Beresford 2005; Wickenden, 2009). A grounded theory approach to data analysis generated nine categories, from which the core category identified was the desire to use the internet and online social media. A theoretical grounded theory is proposed which is also refined to offer a more accessible practical application version. The proposed ground theory is then used to explore whether outcome measures, focused on social inclusion within community 2 environments, may be applicable to perceptions of social inclusion within virtual communities. The key message of the thesis is that young people who use AAC have a clear desire to use the internet and online social media, as it is perceived to offer tangible benefits that are synonymous with identified outcome measures for community-based social inclusion, but they also face many challenges, especially regarding accessibility

Cerebral palsy and online social networks

This study qualitatively explores the experiences and challenges faced when people with cerebral palsy use online social networks. 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, the study recognized the technology is a vital way for these people to communicate and would continue to play a crucial role within their lives