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The Loneliness Experiences of Young Adults with Cerebral Palsy who use Alternative and Augmentative Communication (summary)

 
The
Loneliness
Experiences
of
Young Adults
who
use
AAC

Background

Communication is a significant factor in the maintenance of friendships for young adults. Communicative interactions can be difficult for people who use AAC (PWUAAC) which can make it harder to form and maintain friendships and other relationships, thus increasing the risk of loneliness.

A large social network/group of friends has been found to be very important during the transition from teenage years into adulthood. People with life-long disabilities such as cerebral palsy (CP) often have smaller groups of friends and rely more on families and carers for social activities than their peers without disabilities. This might be especially true of young adults who use AAC.

These factors can lead to an increased risk of loneliness. This has been found to be the case for people over the age of 40 who have CP but little research has been done into loneliness in young adults with CP.

What did the authors do?

This study aimed to explore the experiences of loneliness of young adults, aged 18 to 30, who had CP and used AAC.

Six people participated in the study. All used some form of AAC system as their main form of communication.

Each participant was interviewed on two occasions, firstly to get basic personal information, look into the participants’ experiences of loneliness and to discuss their views on the services available when they felt lonely.

The second session built on the information given in the first and gave the participants opportunities to clarify or correct information.

What did they find?

The information gathered was analysed and five major themes emerged: support networks, AAC system use, technology, school and employment and access and living arrangements. The first three occurred in all participant responses and the data from these is presented in the paper.

Family was found to be the main support network for most of the participants, when family were not available for any reason feelings of loneliness increased. All participants also said that friends were important when they felt lonely. They all reported difficulties in developing friendships with other people with communication or other disabilities.

All participants talked about the importance of AAC in helping improve their communication, keeping friendships going and helping to overcome loneliness. This included increasing independence by improving access to the community and giving control over the environment, thus enabling more time to be spent with friends.

Some negative experiences with AAC use were also reported. These included intelligibility problems, the increased time taken for communication and the difficulty of low-tech systems for communication partners. The availability and reliability of AAC systems were also raised as difficulties.

All participants said that communication technologies other than AAC helped communication with family and friends, thus reducing loneliness. These included telephones, mobile phones, the internet and e-mail. There were, however, difficulties in accessing these. Most people had difficulties using telephones, possibly needing to rely on other people to speak or interpret for them, thus meaning conversations were not private, and this was also true of text messages when support was needed.

Cautions:

The study was very small and cannot be generalised further. Only one participant was male and the effects of gender on the experience of loneliness was not investigated.

Conclusions:

All participants in the research believed that their communication difficulties were a factor in them feeling lonely. They said that lack of time and appropriate service support created difficulties in developing social networks.

PWUAAC need ongoing information and professional support to identify the most appropriate communication systems and to develop their skills in using them. The development of literacy skills for PWUAAC is also identified as being important in maintaining friendships.

Work is needed to train families, friends and support workers in how best to support PWUAAC without being too intrusive or speaking for them.

The authors suggest that ‘education of the general public and increasing community’s knowledge and acceptance of AAC use may help to increase the social interactions of young adults with cerebral palsy’.


Things you may want to look into:

To what extent do children with cerebral palsy participate in everyday life situations?

Exploring Communication Assistants as an Option for Increasing Communication Access to Communities for People who use Augmentative Communication

Long-term outcomes for individuals who use augmentative and alternative communication: Part I – what is a “good” outcome?

Experiences of adults with complex communication needs receiving and using low tech AAC: an Australian context

Post-School Quality of Life for Individuals with Developmental Disabilities Who Use AAC

Added to site May 2015


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