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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.

Young people are using digital technology and online social media within their everyday lives to enrich their social relationships. The UK government believes that using digital technology can improve social inclusion. One well-recognized outcome measure for establishing social inclusion is to examine opportunities for self-determination. Individuals with physical disabilities and complex communication needs who use forms of augmentative and alternative communication (AAC) have lower social participation opportunities. The integration of mainstream digital technology into high-tech forms of AAC (voice output communication aids), and the recent appearance of voice output applications, or ‘apps’, on Apple and Android products, has provided increased opportunities for people who use AAC to engage with digital technology. Research exploring this area, especially in regard to online social media, with people who use AAC is extremely limited, and a specific gap for self-reported experiences exists within the UK. This article describes qualitative, interview-based, grounded theory research with 25 adolescents and young adults who use AAC about their use of digital technology and online social media. The data presented here are part of a larger study, and the findings within this article suggest that participants have a desire to use the internet and online social media as it is perceived to increase opportunities for self-determination and self-representation whilst enriching friendships. The wide diversity of literacy and language skills amongst participants, as well as accessibility challenges, mean collaborating with others and receiving technical support from educational settings, families and friends are vital.