‘Happy and excited’: Perceptions of using digital technology and social media by young people who use augmentative and alternative communication

1 Complex communication needs and AAC

Severe motor impairment and complex communication needs have implications for social participation opportunities (Fauconnier et al., 2009; Imms, 2008; Parkes et al., 2010). AAC can support natural speech and writing, and total communication strategies focus on integrating natural speech with forms of AAC (Clarke et al., 2012; Marshall and Goldbart, 2008). Using total communication can be ‘intricate and nuanced’ (Clarke et al., 2012: 45), and AAC-mediated conversations will be significantly slower than a typical exchange (Higginbotham et al., 2007). Repairing misunderstandings and changing or initiating topics are different when one partner uses AAC (Murray and Goldbart, 2009) and can challenge conversational conventions in areas such as turn-taking (Sacks et al., 1974). This can lower perceptions of social competence causing negative attitudes to form about people who use AAC (McCarthy and Light, 2005). Interactional discourse to share narratives and experiences can be difficult, affecting social communication and self-representation (Black et al., 2012; Todman et al., 2008; Waller, 2006).

2 Opportunities and challenges for VOCA and DT use

Using DT & OSM may change the dynamics of interpersonal communication for people who use AAC by alleviating turn-taking challenges and reducing the time pressures of face-to-face conversations (Sundqvist and Ronnberg, 2010). VOCAs have progressed since 2007 to become multi-purpose computers facilitating access to mainstream DT & OSM (Chapple, 2011), and the availability of voice output applications, or ‘apps’ (on Apple and Android devices), has created a two-tier market and increased opportunities for online engagement by people who use AAC. However, access to DT is challenging for people who use AAC on a physical and cognitive level.

People who use AAC either have ‘direct access’ (can use physical contact or point to a resource, including via eye gaze) or ‘indirect access’ (using a form of scanning to identify a desired item before activating a switch to select it). VOCA manufacturers have expertise in the switch control area, and historically the mainstream arena has been weak, but the latest iOS7 operating system from Apple has incorporated ‘switch control’ as standard (Ablenetinc, 2013). Literate individuals can create and store text messages on their VOCAs whilst non-literate individuals can use symbol-based vocabularies. People with complex communication needs often face challenges in areas such as literacy (Browning, 2002; Smith, 1992) and language domains (Sturm and Clendon, 2004) so it may be difficult to engage in online text-based environments. VOCA devices and voice output ‘apps’ have developed ways of using symbolized vocabulary software to post onto social media sites in a text-based form.

3 Existing self-report research by people who use AAC of using DT & OSM

Self-report data from people who use AAC about the use of DT & OSM is extremely limited and existing research is patchy and scattered across different countries. In Australia, Raghavendra et al. (2012) conducted qualitative interviews with a cohort of 15 children with physical disabilities (of whom five had complex communication needs) and found the internet was used for a variety of purposes, but the extent and frequency of use was lower than peers. The digital skills of parents, siblings and friends were significant influences on levels of use.

Garcia et al. (2011) looked at the use of computers and AAC devices by 30 young people with cerebral palsy and associated communication challenges in a Spanish special educational centre. Questionnaire data revealed a strong interest in computers but using DT required a high level of support from professionals and little assistive technology was available within home settings. In the USA, four small studies found people who used AAC thought that email facilitated support with other people who use AAC (Cohen and Light, 2000; Rackensperger et al., 2005; Sundqvist and Ronnberg, 2010) and was ‘the most effective way of being understood by others’ (Atanasoff et al., 1998: abstract).

Cooper et al. (2009) found that using computers mitigated feelings of loneliness, and Dattilo et al. (2008) found that computers increased leisure opportunities for people who use AAC. Individuals who use AAC have reported the benefits of using DT; for example, ‘Lesley’ felt using a computer supported meeting new people online (Krogh and Lindsay, 1999), Stevens (2011) said that using a hybrid VOCA and an iPad had ‘revolutionized my mobile telephony’ (p. 7) and Hyatt (2011) felt that accessing the internet on an iPad deepened her social communication in ways not possible on her single-function VOCA.

These studies show that DT & OSM may have social inclusion implications for people who use AAC but historically this is a marginalized research population (Morris, 2003; Rabiee et al., 2005; Wickenden, 2009). This current study is unique as the views of people who use AAC are specifically under-represented within the UK literature base on the topic of DT, especially in relation to the use of OSM.

1 Recruitment and participants

Purposeful sampling targeted the small UK AAC population through AAC-focused educational settings and organizations. Inclusion criteria required participants to be over 14, use a VOCA and the internet and OSM (this assumed literacy). Following an enquiry from a speech and language therapist, students with low cognitive and literacy skills who were using OSM with support were also included. Valuable data would have remained hidden if inclusion had been limited to independent, literate internet users.

Twenty-five young people (aged 14–24) who used VOCAs, qualified as level V on the Gross Motor Function Classification System (GMFCS; Palisano et al., 2007) and had a wide diversity of language/literacy skills and access requirements took part in the study. Four participants used Makaton signing, ¹ a communication book, an alphabet board, and an eye-transfer frame ² during their interview (from choice or technical breakdown), and in fifteen of the interviews a communication support partner was present.

Informed consent was obtained by sending differentiated information in advance to allow information to be disseminated. Before the interviews, secondary checks were made, especially for video recording. Non-verbal communication is often used by people who use AAC and video recording removes the need to verbally describe messages, which can disrupt the interview rapport. Two participants decided to withdraw completely at this secondary stage and three declined video recording. Appropriate university ethical approval and criminal record clearance were obtained before recruitment began.

2 Main data collection and analysis

Semi-structured interviews (30 minutes to 2 hours), using the topic guide (Appendix 1), took place within eight mainstream and special educational settings (three of which were residential). Time challenges limited the number of questions covered, and some were summarized to target key emergent ideas, e.g. ‘How does using Facebook make you feel?’ Twenty-four face-to-face interviews were conducted, and one participant contributed via a blog. Three participants asked for questions in advance so the topic guide (Appendix 1) was sent by email.

In line with the concurrent data collection and analysis procedure of grounded theory, the interviews were immediately transcribed verbatim and initially coded on a line-by-line basis to identify actions within the data (Charmaz, 2006). Memos then sought to analyse emerging concepts that were taken into subsequent interviews. Theoretical sampling was used to identify participants who could provide information on emerging theory, and the final interviews were conducted with literate participants who used social media independently. At the end of data collection, 25 transcripts (average length: 3,000 words) were imported into Nvivo 9.0, a software programme that manages narrative data. The lead author then continued coding to select and draw together the initial codes that made most analytical sense of the data and created focused codes. The focused codes were then carried forward into the theoretical coding phase where relationships between the focused codes were explored and raised to analytical categories that tell the story of the data (Charmaz, 2006).

Category 1: Desire to be online

Participants were asked how they felt about using the internet, Peter said ‘now I’m starting to use it more, very excited’, Jack said ‘happy and excited’ and Caroline (blog) explained ‘the internet and social media are an important part of my life. I cannot imagine life without that.’ Georgie used her eye-transfer frame to say Facebook makes her feel happy. When asked what they liked about the internet, Nancy said ‘I like use Facebook Skype’, and Olivia replied ‘with Facebook I want to use more.’ Asked how it would feel if online access was unavailable Caroline said in her blog ‘I am fed up if I do not have access somewhere.’

Category 2: Self-determination

Self-determination was perceived to increase through using the internet. Xavier was asked how he felt when he first used the internet and said ‘It made me very happy. It gave me more independence. I can organize things like meetings myself.’ Asked what the internet was used for, Peter said ‘planning trips with my PA’, and added if he lost access he ‘would have to rely on others to find things out for me.’ Harriet said she uses ‘Facebook, shopping and I build websites, just started my business. I do advertising on my status.’ Nicholas follows his basketball team and posts information on Facebook to show they are ‘special’. Moira follows the Paralympic sport of ‘Boccia’ and Becky shares news about ‘rebound’ (a form of trampoline exercise). When asked if there was anything she would like to add that she had not been asked about, Harriet said, ‘main thing about Facebook is I can send a message to either my brother or my dad if I have a problem … because I can’t always tell the person with me.’

Category 3: Self-representation

The participants indicated Facebook increased their opportunities for self-representation. When asked what kind of things they put on Facebook, Will said ‘what I think’ and ‘a lot’ about himself. Harriet showed her sense of humour and ‘put silly stuff on my Facebook’ joking new friends ‘would probably run’ when viewing her page. Keith answered, ‘I like seeing me holding Pikachu’ and Carol (using Makaton signs) answered the question by pointing animatedly at herself. Asked if this meant telling people about herself, she nodded ‘yes’ vigorously. Nancy felt ‘it good show pictures’ and Harriet said the timeline feature was good for sharing ‘really old’ events. When asked what the main benefit of being online was, Nancy replied, ‘people understand me better in writing.’

Category 4: Enriched friendships

When asked to explain the value of the internet and OSM, typical responses were: ‘for talk to people’; ‘it me in contact with everybody’; ‘it helps to talk everyone’; ‘talk a moment and take a nosy’; ‘I can talk to people on it’ and ‘talk friends’. People who use AAC can have difficulty keeping in touch with others but there was evidence that OSM supported relationships over distance. Xavier explained he found email useful ‘especially when I am here’ (in residential college), Olivia valued Facebook to keep in touch with ‘my old teachers’ and Nicholas and Keith both used it to keep in touch with people from ‘old school’. Keith explained he would ‘send them a text. I find them’ and Harriet said she could ‘get in touch with friends I know in New Zealand’ whilst Caroline said ‘I love Facebook! … I stay in touch with people I do not see often.’

Category 5: Access technology

Asked about how they used a computer, Nicholas said he used ‘special switches eight at home’ and Nancy used her VOCA to drive an independent computer explaining ‘need my cable to computer’. Not knowing about access equipment was an issue; Peter and his family only found out through visiting a further education college that Switch XS™ software would allow Peter to independently access a computer. Olivia was waiting for a 3G dongle to be installed on her VOCA so she could start to use Facebook and texting on her own. Will (indirect access) likes playing online ‘golf’ but explained ‘it’s hard’ and asked if he played other types of games, he said ‘I cannot play’ due to intricate controls. Moira (direct access) likes to play ‘anything’ but finds the integrated computer on her VOCA limiting because, ‘I can’t play a game.’ Gaining independent access was valued; Caroline said ‘for ages I wanted to access the internet independently, but … I did not know how … Now I can write a message on the [VOCA] then post it on Facebook. I was really, really excited the first time I did that independently.’

Category 6: Describing support

Parental knowledge of technology was sometimes lower than that of the participants. Will’s parents were not interested in social media but technology was a ‘big thing’ for him. Many participants were reliant on parents or personal staff to produce and share online content and reasons for this were: insufficient literacy skills, lack of relevant equipment and the slow speed of access technology. As explained by Mary, Researcher: ‘do you ever do Facebook when you are on your own,’ Mary: ‘no’ but she used MSN because it was ‘easy than Facebook’ which was difficult to ‘read’. Before Peter received Switch XS™ he and his dad (Paul) did Facebook together; Paul: ‘we’ll go on and see what’s come through … I read them out … you get the opportunity to comment’; Peter: (laughs). Caroline, who can independently post says sometimes that ‘My mum helps me, I talk with my voice and she types what I say [because] my switch is really slow. The problem is that#s [sic] not private.’ Sibling support was described; Keith explained the person who helped him with Facebook was ‘my sister’. Mary used MSN to communicate with her younger sister from their respective bedroom computers, and her sister said not to use Twitter because of ‘rude people’.