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Acceptance of Augmentative and Alternative Communication Technology by Persons with Amyotrophic Lateral Sclerosis (summary)

acceptance
 
of
AAC
 
in
ALS

Background

Around 80% of people with amyotrophic lateral sclerosis (ALS) experience significant impairment to their communication and require augmentative and alternative communication (AAC) to support their daily communication needs. Literature suggests that around 25% of these people do not accept AAC interventions. For those who do accept AAC there is little known about their patterns of acceptance, e.g. the influence of high versus low technology, the point in the progression of ALS at which AAC is introduced etc. Some researchers have found that high-tech systems tend to be used by people who have ALS (PALS) to express detailed needs, for written communication and to tell their stories, whilst low-tech is used for conversational communication and to rapidly indicate wants and needs.

The reasons some PALS do not accept AAC technology are not well understood, but might include; the rate of progression of their disease, the time taken to get a diagnosis of ALS, expectations and attitudes of their communication partners, experience with and attitude to technology and access to intervention and support.

PALS attitudes to AAC can be considered as being on a continuum, from immediate acceptance of the technology to acceptance with reluctance or delay and then to outright rejection. If AAC is initially accepted its’ use might be discontinued at a later point due to a change in need, ability or simply no longer wanting to use it.

What did they do?

This study aimed to see if there is a pattern to acceptance of high-tech AAC and to investigate the reasons for either acceptance or discontinuance of the use of AAC technology among PALS. It looks only at high-tech systems.

Fifty PALS participated in the study. They were all patients who regularly attended one of 2 clinics for reviews of their speech and swallowing. The information was gathered over a 4 year period.

Participants were seen for AAC assessment when their speech was beginning to deteriorate and their intelligibility was 90% or lower on assessment. During the AAC evaluations participants were shown a selection of different types of AAC device, given opportunities to use them and to have a brief trial of preferred systems. Following the AAC evaluation interventions were recommended for each person.

The PALS responses to the evaluations were divided into four categories; immediate acceptance, delayed acceptance, rejection and discontinuance.

Participants and their families were interviewed about their decisions, and from this data the researchers explored themes for AAC technology acceptance.

What did they find?

There was a very high rate of acceptance of AAC technology. 90% of participants showed immediate acceptance, 6% delayed acceptance and 4% rejection.

Reasons given for immediate acceptance included the wish to communicate with other people and to ‘write/tell one’s story’, a desire to be involved in in their community and to continue in employment or volunteer in a work related field.

The people who showed delayed acceptance had between 6 months and 2 years delay and were unable to speak for at least six months prior to getting a device. Reasons found for delayed acceptance included family member resistance, lack of support from medical specialist and participants not viewing themselves as being disabled or needing AAC. The support and encouragement of family members was very helpful in these PALS accepting AAC.

The main reason identified for complete rejection of AAC technology by two participants was cognitive limitations, both had a form of dementia and rejected any form of AAC, high and low-tech.

None of the participants in this study discontinued their use of AAC until very close to the end of their lives.

Conclusions

This study found a higher rate of AAC acceptance than previous studies, possibly reflecting changes in technology and increasing acceptance of AAC within wider society. The authors suggest that factors influencing acceptance of AAC amongst PALS include; early intervention, provision of information about the effects of ALS on speech and language, ongoing contact with specialist professionals, monitoring of changes to ensure timely intervention and keeping PALS aware of AAC services and possible interventions. Further research is needed into these areas and also into the type of cognitive impairment that can be associated with ALS and the influence of this on the use of AAC.

Cautions

The participants in the study were very familiar with the clinician who made the AAC recommendations, this might have influenced their acceptance of suggestions, as might the clinician’s level of experience and expertise.


Things you may want to look into:

Real-Life Challenges in Using Augmentative and Alternative Communication by Persons With Amyotrophic Lateral Sclerosis

Supporting communication for patients with neurodegenerative disease

Use of augmentative-alternative communications in patients with amyotrophic lateral sclerosis

Don't give up: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication

Motor Neurone Disease Association

Added to site May 2016


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