Judge, S. orcid.org/0000-0001-5119-8094, Bloch, S. orcid.org/0000-0002-5355-8134 and McDermott, C.J. orcid.org/0000-0002-1269-9053 (2019) Communication change in ALS: engaging people living with ALS and their partners in future research. Disability and Rehabilitation: Assistive Technology, 14 (7). pp. 675-681. ISSN 1748-3107
Abstract
OBJECTIVE: To involve people living with amyotrophic lateral sclerosis (plwALS) in the scoping and identification of research priorities related to the changes in ALS communication including the use of augmentative and alternative communication (AAC). METHODS: Two focus groups of plwALS at early and late stages of change to speech intelligibility were carried out as a patient and participant involvement exercise. The transcriptions of these groups were analyzed thematically and compared between groups. RESULTS: Aspects of anticipation, preparation, adaptation and partnership were identified as key to dealing with communication change as a result of ALS. In particular the involvement of partners was clearly significant, as was the impact on them as well as the plwALS. PlwALS successfully contributed to focus groups and the process of group discussion about communication itself appeared constructive. CONCLUSIONS: Research and new interventions should focus further on how to support the partners of plwALS. Future research with plwALS should place AAC strategies and technology in the context of wider communication and investigate how best to support the anticipation, preparation and adaptation to communication change. Specific areas of research need relating to this support are suggested. IMPLICATIONS FOR REHABILITATION People living with ALS (plwALS) are rarely involved in setting the research agenda in the areas of speech and augmentative and alternative communication (AAC). Enabling plwALS to contribute to research, even those with no speech, is feasible with appropriate support. Feedback indicates that communication change and AAC are experienced in different ways by plwALS. Research and intervention should focus on how to support the anticipation, preparation and adaptation to communication change for plwALS.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2018 Informa UK Limited, trading as Taylor & Francis Group. This is an author produced version of a paper subsequently published in Disability and Rehabilitation: Assistive Technology. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | AAC; Communication; augmentative communication; communication aid |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research The University of Sheffield > Sheffield Teaching Hospitals |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 09 Oct 2018 09:30 |
Last Modified: | 10 May 2024 11:04 |
Status: | Published |
Publisher: | Taylor & Francis |
Refereed: | Yes |
Identification Number: | 10.1080/17483107.2018.1498924 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:136859 |