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Social media experiences of adolescents and young adults with cerebral palsy who use augmentative and alternative communication (summary)

Social
Media
 
Experiences
 
of
People
 
with
Cerebral Palsy
 
who
 
use
AAC

Background

Recent developments in technology have increased opportunities for communication through social media.

For people who use augmentative and alternative communication (PWUAAC) the new opportunities are not always matched by improved access.

A much lower percentage of people with disabilities use the internet than those without disabilities across all age groups. People who do not have internet access might become isolated compared to those who do.

There is limited research into whether people with complex communication needs (CCN) use social media for communication, social participation, leisure and learning opportunities. Research that has been carried out found that social media use has many positive benefits. The main barriers to independent use are lack of access to equipment, mobility issues and limited literacy skills. All of this work that has been carried out with adolescents; there is no previous research into social media use by adults who use AAC.

 

What did they do?

This study looked specifically at the views and experiences of adults who have cerebral palsy about using social media. It aimed to investigate:

  • Advantages of social media
  • Disadvantages to social media
  • Barriers to successful use
  • Supports to successful use
  • Recommendations for other individuals using AAC, as well as support personnel, policy makers and technology developers

An online focus group was used. Nine adults were involved, all had cerebral palsy, CCN and functional literacy skills. They had internet access, used some form of social media at least three times a week and were prepared to commit to participating in an online forum for 6 to 8 weeks.

The focus group took part in online discussions with topics and questions posted before the group began. New topics were introduced approximately every four to seven days. One of the researchers acted as moderator.

The group continued for six weeks. Following the closure of the group all participants were sent information summarizing the themes and sub-themes discussed, enabling them to confirm its accuracy and completeness.

 

What did they find?

The posts to the focus group were analysed into themes and sub-themes related to the areas being investigated.

Advantages of using social media - six main advantages emerged; connecting with other individuals, feeling typical, making communication easier, gaining independence, getting help and supporting employment.

This included being able to talk to several people in a short space of time, developing relationships, communicating in a ‘normal’ way and more easily than face-to-face, a reduction in the influence of slow communication speeds, being able to use social media independently to contact companies or distant friends and to ask for help or manage personal carers. Several participants reported that social media had helped them get or promote their work.

Disadvantages of social media use – five disadvantages were identified; managing cyber security threats, lack of direct contact, lack of personal connection, lack of immediate responses and over reliance on technology.

Participants were concerned about the anonymity of social media and not knowing whether contacts are genuine. The issue of a lack of direct and physical contact was raised as a disadvantage, as was a lack of personal connections; with communication being to the ‘masses’ rather than at an individual level. The lack of immediate response in online conversations concerned some participants.

Whilst appreciating the benefits of technology to support communication participants were concerned that it can lead users to forget about or ignore people who are physically present with them.

Barriers to use of social media included technology, mainly issues with the way their AAC device worked with websites, difficulties with speed of typing in real-time communications, making ‘live chat’ features unpopular, and physical access barriers due to motor control difficulties making using mobile technology with small buttons very challenging.

Supports for social media use - specific technology features such as prediction, abbreviation expansions were viewed positively. Most participants liked having supports on their dedicated communication devices to help them access sites or use shortcuts.

The idea of educating communication partners on social media was highly valued, for example telling people that typing will be slow before starting to use instant messaging so they will understand.

The importance of using social media safely was emphasised, such as managing friends requests and being careful about what is posted.

The focus group had some recommendations about the use of social media related to other individuals using AAC and support personnel, including the need to teach safe use and help to overcome barriers.

Recommendations for policy makers were mainly around funding of unlocked AAC devices so social media can be accessed.

For technology developers participants wanted a range of additional or changed features depending on individual needs and ideas.

 

Conclusions:

Whilst the use of social media was important to all participants in the study they had to overcome a number of barriers to use it successfully and also saw some disadvantages to it.

The study suggests that there are; core implications for practice in supporting PWUAAC to access social media safely, implications for training of professionals to extend beyond face-to-face interactions and written communication implication for technology development to more fully meet the needs of people with CCN and implications for policy makers in funding devices.

 

Cautions:

The study only considers the perspective of a small number of individuals and the findings might not be transferable to the wider population of people with cerebral palsy who use AAC.

The study does not consider how people’s views might change over time.

In addition the views of people who are not literate and/or do not use social media were not taken into account.

 


Things you may want to look into:

Social media experiences of adolescents and young adults with cerebral palsy who use augmentative and alternative communication

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

‘‘We definitely need an audience’’: experiences of Twitter, Twitter networks and tweet content in adults with severe communication disabilities who use augmentative and alternative communication (AAC)

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

 

Added to site December 16 


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