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How Virtual Communities form support networks and augment Social Inclusion for the socially excluded.

Abstract Traumatic Brachial Plexus injured (TBPI) persons are under a high risk of becoming withdrawn and forced out of physical societal rings because of the extensive and complicated nature of their long term injury. A promising platform to help prevent exclusion from their environment and deface abnormality is the internet in the form of social groups and online activities which may be used to supplement actions preformed prior to their injury.As a step towards highlighting the complex psychological recovery for those who have a long term injury or live with a disability, this study aims to capture some of the best uses of the internet for them by signifying the effect it has their lives.

Support Network

Social Exclusion Social Inclusion

When people do not have the ability to participate in society effectively they become socially excluded. Exclusion also normally stems from diverse members of a community being less able to relate to other members in a community who seem to share similar interests, beliefs or abilities as each others. Social support is identified as a key contributor to improving an individual’s mental state of mind and future outlook. By accessing a virtual community, people can get advise and help from others in a similar situation.

Types of Disabilities

Visual and hearing impairment, Cognitive and learning disabilities (Dyslexia), Physiological disorders and hidden disabilities such as chronic, phantom pain and depression.

Information Communication Technologies

Internet Technologies = Applications, protocols and architecture.

Medical Technologies (MT) = ICT in Healthcare

Assistive Technologies (AT) = Assistive, adaptive or rehabilitative hardware and software tools.

Virtual Communities

Online communities and social networking sites consist of groups of people who interact in a virtual environment. A few examples of virtual communities are Face book, Bebo, Second life, and TBPI UK a health information website and forum.

Research Questions - Hypotheses

Q1 Are assistive hardware technologies effective?

H1:“IfBrachial Plexus injured user (disabled user) is able to manoeuvre faster when using a right handed keyboardthen the assistive hardware technology is assistive”.

Q2 Are assistive software technologies effective?

H2:“IfDyslexic user (disabled user) is able to manoeuvre around the site faster when using Claroread automatic text to speech software then the assistive software technology is assistive”.

Q3 Is society less exclusive to users who participate in an online community creating a less exclusive society allowing more opportunism for social interactions for disabled people?”

H3:“If most beneficial element is socialising then internet online community creates more opportunities for social interaction for disabled people”.

Q4 Can information communication technologies supplement any activities prior to injury?

H4:“If disabled users view the internet and associated technologies as having supplemented activities prior to their disability then the technologies are beneficial”.

  • Methodology
  • Researched online communities via the internet.
  • Case Study analysis
  • Observation & action-oriented experimental research of empirical subject (former case study)
  • Observation of TBPI UK & Face book Virtual community
  • TBPI UK Virtual community members Questionnaire
  • Medical Professionals Questionnaire

Case Study

Four years ago, a male who trained daily at the gym competing in competitions and who had worked as a transport engineer for many years is travelling home after work. On his way home he is involved in a motorcycle incident.

As a result of the accident the individual now has restrictive but movement to the right leg, paralysis of the left arm and experiences large spouts of nerve pain.

His days are filled with him trying to remove the negative feelings attracted by the pain and his other limitations which include dyslexia. His social life has declined and opportunities to make new links restricted, he had become increasingly depressed.

Additional research questions

Q5 Do internet technologies give people with a disability the ability?

Q6 Do Medical professionals think the Internet; online communities or support groups can help patient’s pre or post operation?

Results

Results of experiment on Empirical subject & introduction of assistive technologies (AT)

Results of TBPI UK Virtual Community members questionnaire

R3 The second most beneficial element for users of the TBPI UK virtual community is socialising.

R5 Internet technologies create social inclusion supplementing or enhancing activities hobbies such as gaming, shopping or social interactions by offering them environments to facilitate their disability. The study shows internet opens up a doorway for an assortment of opportunities.

R4 75% of the participants from the TBPI UK Virtual community view the internet and associated technologies as having supplemented activities prior to their disability.

R1 The assistive hardware technologies were found to be effective, the right handed keyboard allows the subject to type faster and contentedly following a better key sequence.

R2 The assistive software technologies were found to be effective, the subject now visits TBPI UK virtual community on a regular basis using Claroread text to speech software.

Results of Medical Professionals questionnaire

R6 When asked if pre or post operative patients are ever referred to the internet or associated technologies the professor answers no but answers but adds, “appropriate sites may aid rehab, but there is a great deal of variation between injury and patients, and so websites may not be able to cater”.

The clinical neuropsychologist refers and encourages her clients to look up information on the internet.

Conclusion

In conclusion the study shows that the Internet used in conjunction with communication aids in the form of Assistive Technologies (AT) and Medical Technologies (MT) provide opportunities for people with a disability. The opinions of one medical professional can have a huge influence on a socially excluded person who needs support and information. It would be invaluable if professionals in the field try virtual communities and activities before deciding to refer or not. Society is far less exclusive to users who participate in an online community creating a less exclusive society and allowing much more opportunism for social interactions for disabled people.

TBPI UK virtual support network helps build back up the self-esteem I lost due to my injury and here I get respect given by others.

Thank you Liz!! (Tbpi UK leader...)

TBPI UK VIRTUAL SUPPORT NETWORK

Online activities allow me to get information, advice & understanding...its all just a click away.

How has the virtual health community helped us?

I would have liked to have been advised about the appropriate websites by my disability experts, medical professionals, and rehabilitative teams during my stay in hospital when I was most vulnerable

On TBPI UK forum I met Garry who is dealing with a high degree of nerve pain caused by his injury also. After chatting online, we now intend to meet up in August.

Everybody is equal online!

We would like to see connection of virtual communities through the internet on hospital wards and used as part of the short and long term rehabilitation program.

  • Future work
        • Build Second life community and virtual healthcare team using tools designed to entice disabled persons to generate social interaction through colourful graphics realistic features and join support groups
            • Information and Health communities introduced to patients on hospital wards.
            • Internet technologies used as a rehabilitative tools and included in rehabilitation program.
            • Virtual communities recommended by Medical professionals to their patients.

TBPI UK VIRTUAL SUPPORT NETWORK

Clare Williams <clarean.williams@talk21.com>

References

Anderberg, P (2006) Face disabled people, technology and internet. Lund University

Barton, L. (ed.) (1996) Disability and society: emerging issues and insights. Harlow: Addison Wesley Longman Ltd.

Cummings, J.A., Butler, B. and Kraut, R. (2002) The quality of Online Relationships: Online relationships are less valuable than offline ones. Indeed, their net benefit depends on whether they supplement or substitute for offline social relationships, Communications of the ACM. July, 45 (7), pp. 103-108. [Online] Available from: ACM Digital Library.

Gilnert, E, P (2008) Computers and People with Disabilities [Online]. Available from: http://portal.acm.org/citation.cfm?id=1408760.1408761

Harris, J., Bolik, F. and Kroll, T. (2007) Making advanced Technology useable for independent living by disabled people at home (MATILDAH). The Interdisciplinary Disability Research Institute (IDRIS). [Online] Available from: http://www.idris.ac.uk/book/Advance%20Tec/Disability%20&%20Space%20pres.ppt

Dr. Nirod, K. Dash., (2005) Online research methods Resource[Online]. Available from: http://www.celt.mmu.ac.uk/researchmethods/Modules/Selection_of_methodology/index.php

Preece, J. (2000) Online communities: Supporting sociability, designing usability. Chichester: John Wiley & Sons Ltd.

Preece, J. (2005) A Multilevel Analysis of Sociability, Usability, and Community Dynamics in an Online Health Community. [Online] Available from http://portal.acm.org/citation.cfm?id=1067864

Clare Williams - Business Information Technology, School of BCIM