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Research Article

“Social Media has Opened a World of ‘Open communication:’” experiences of Adults with Cerebral Palsy who use Augmentative and Alternative Communication and Social Media

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Pages 25-40 | Received 07 Dec 2014, Accepted 11 Apr 2015, Published online: 09 Jun 2015
 

Abstract

An online focus group was used to investigate the experiences of nine individuals with cerebral palsy who use augmentative and alternative communication (AAC) and social media. Information was gathered related to (a) advantages of social media, (b) disadvantages of social media, (c) barriers to successful use, (d) supports to successful use, and (e) recommendations for other individuals using AAC, support personnel, policy makers, and technology developers. Participants primarily chose to focus on social media as a beneficial tool and viewed it as an important form of communication. The participants did describe barriers to social media use (e.g., technology). Despite barriers, all the participants in this study took an active role in learning to use social media. The results are discussed as they relate to themes and with reference to published literature.

Notes

Acknowledgements

Portions of this article were submitted by the first author in partial fulfillment of PhD requirements at The Pennsylvania State University Department of Communication Disorders. A preliminary version of this article was presented at the Annual Convention of the American Speech-Language-Hearing Association, Orlando, in November 2014.

The authors would like to offer their gratitude and thanks to the participants who contributed their time, experiences, and ideas.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

This project was supported by funding from the Penn State AAC Leadership Project, a doctoral training grant funded by U.S. Department of Education [grant #H325D110008]. However, the content does not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government. Funding support for the AAC doctoral program at Penn State is also provided through the Hintz Family Endowed Chair in Children's Communicative Competence.

Notes

1. Phorum is an open source message board system. Additional information is available from http://www.phorum.org/

2. Yelp is a crowd-sourced local business review and social networking site. Additional information is available from http://www.yelp.com/

3. YouTube is a video-sharing website: www.youtube.com

4. Flickr is an image and video hosting website: https://www.flickr.com/

5. Facebook is an online social networking service. Additional information is available from www.facebook.com

6. Myspace is a social networking site that allows its users to create web pages to interact with other users. Additional information is available from https://myspace.com/

7. LinkedIn is a professional social networking site. Additional information is available from https://www.linkedin.com/

8. Twitter is a social networking site that allows users to send and read messages with a maximum of 140 characters. Additional information is available from https://twitter.com/

9. Wikispace is a web application that allows collaborative modification, extension, or deletion of content. Additional information is available from https://www.wikispaces.com/

10. Snapchat is a video messaging application in which users can take photos, videos, and add text or drawings, and send them to recipients. Additional information is available from https://www.snapchat.com/

11. IM (instant messaging) is a type of online chat that offers real-time text transmission on the Internet. Additional information is available from https://www.aim.com/

12. Pseudonyms have been used throughout the text to protect confidentiality of the participants. The Web-based discussion did not easily support proofreading and editing as participants posted, we have made minor corrections of spelling and grammatical errors.

13. iPhones are smartphone technology designed and marketed by Apple Inc. www.apple.com

14. iPads are registered trademark of Apple Inc., Cupertino California. www.apple.com

15. Trillian is a software that connects multiple instant messaging services. Additional information is available from https://www.trillian.im/

16. YouTube video “Look Up” is a spoken word film about disconnecting from technology https://www.youtube.com/watch?v = OKZL9HpWAmw

17. iWordQ is assistive technology writing support software. Additional information is available from http://www.goqsoftware.com/

18. EzKeys is a software program that provides communication, computer access and environmental control. Available from http://www.words-plus.com/

19. The Tobii I-12 is a voice output communication device. Additional information is available from Tobii ATI at http://www.tobii.com/en/assistive-technology/north-america/

20. In the United States, Medicare covers speech-generating devices as durable medical equipment. Durable medical equipment includes items that are (a) primarily used for a medical purpose and (b) not useful to an individual in the absence of illness or injury. Manufacturers therefore, lock access functions such as Internet, e-mail, and telephone.

21. Google Talk is an instant messaging and video chat platform. Additional information is available from https://www.google.com/+/learnmore/hangouts/

22. Emojis are small icons or images used to express an idea (e.g., smiley face).

23. The Pathfinder is a dedicated, voice-output communication device. Additional information is available from the Prentke Romich Company at www.prentrom.com

24. Skype is an application that allows for video chatting, voice calling, messaging, and file exchanging. Additional information is available from http://www.skype.com/en/

25. Speak for Yourself is an AAC application available for Apple products (e.g. iPad). Additional information is available at http://www.speakforyourself.org/

26. Proloquo2go is an AAC application available for Apple products. Additional information is available at http://www.assistiveware.com/product/proloquo2go

27. Tumblr is a microblogging website https://www.tumblr.com/

28. BYOND is an online community for creating and playing multiplayer games. Additional information is available from http://www.byond.com/

29. PatientsLikeMe connects individuals with similar conditions to share their experiences and support each other. Additional information is available from http://www.patientslikeme.com/

30. The Eco is a communication device from the Prentke Romich Company at www.prentrom.com

31. The Dynavox Vmax is a voice output communication device available from http://www.dynavoxtech.com/tobii-dynavox/

32. Pinterest allows sharing and collecting through visual bookmarks (also called boards). Additional information is available from http://www.pinterest.com/

33. The NOVA Chat 10 is a voice output communication device. Additional information is available from Saltillo Corporation at http://saltillo.com/

34. The Dynavox Maestro is a voice output communication device. Additional information is available from http://www.dynavoxtech.com/tobii-dynavox/

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