A grounded theory of Internet and social media use by young people who use augmentative and alternative communication (AAC)

Abstract

Purpose: This paper presents a conceptual grounded theory for how young people with a diagnosis of cerebral palsy who use augmentative and alternative communication (AAC), perceive using the Internet and social media. The aims of the research were to understand and contextualise their perceptions of access and use and explore implications for self-representation and social participation; to date literature on this topic is limited. Method: A constructivist grounded theory research approach concurrently collected and analysed interview data from 25 participants (aged 14–24 years) who use AAC and additional sources. Results: A conceptual grounded theory was developed around an emergent core category that showed young people who use AAC have a clear desire to use the Internet and social media. This was underpinned by eight supporting categories: reported use, described support, online challenges, access technology, speech generating device (SGD) issues, self-determination, self-representation and online social ties. Conclusion: The conceptual grounded theory supports understanding of facilitators and challenges to use of the Internet and social media by young people with a diagnosis of cerebral palsy who use AAC. The grounded theory illustrates how the desire to use the Internet and social media is based upon perceived benefits for enriching social relationships and enhancing opportunities for self-representation and self-determination that are synonymous with identified antecedents for community-based social inclusion. Some of the participants are engaging with the Internet and social media through collaborative practice and the implications for how this phenomenon may impact on orthographic literacy and the personal care workforce are raised.

Implications for Rehabilitation

• This research has created a conceptual grounded theory framework to support a deeper understanding of the perspectives of young people (with a diagnosis of cerebral palsy) who use augmentative and alternative communication (AAC) in relation to engaging with the Internet and social media. The conceptual framework illustrates factors that facilitate and/or challenge use of the Internet and social media and can be used to guide future research and funding organisations.

• The core message of the grounded theory is that the young people who use AAC have a desire to engage with the Internet and social media due to perceived benefits for enriching social relationships and enhancing opportunities for self-representation and self-determination.

• The paper illustrates how these digital communication benefits are synonymous with identified antecedents for perceptions of community-based social inclusion.

• Participants describe collaborating with others to use the Internet and social media which may have implications for the development of orthographic literacy and the personal care workforce.

• Augmentative and alternative communication
• cerebral palsy
• internet
• social media
• self-representation
• social participation
• speech generating devices
• young adults

Acknowledgements

The authors acknowledge the contribution of Dr. Geoff Bunn for providing consultation during the conceptualisation of this grounded theory.

Declaration of interest

The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper. The research was supported by a PhD studentship bursary from Manchester Metropolitan University and by grants from Communication Matters UK and The Royal College of Speech and Language Therapists, UK.

Notes

¹GPII is a Raising the Floor project (www.raisingthefloor.org) dedicated to making the Internet accessible to everyone. It is a worldwide initiative made up of organisations from academia, industry, consumers, non-government organisations, activists, etc.