763
Views
3
CrossRef citations to date
0
Altmetric
Original Research

A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States

ORCID Icon, ORCID Icon &
Pages 1121-1134 | Received 17 Aug 2022, Accepted 15 Nov 2022, Published online: 30 Nov 2022

References

  • Beukelman D, Fager S, Nordness A. Communication support for people with ALS. Neurol Res Int. 2011;2011:714693.
  • Brownlee A, Bruening LM. Methods of communication at end of life for the person with amyotrophic lateral sclerosis. Top Lang Disord. 2012;32(2):168–185.
  • Hanson EK, Yorkston KM, Britton D. Dysarthria in amyotrophic lateral sclerosis: a systematic review of characteristics, speech treatment, and augmentative and alternative communication options. J Med Speech Lang Pathol. 2011;19(3):12–30.
  • McNaughton D, Light J. The iPad and mobile technology revolution: benefits and challenges for individuals who require augmentative and alternative communication. Augment Altern Commun. 2013;29(2):107–116.
  • Light J, McNaughton D, Beukelman D, et al. Challenges and opportunities in augmentative and alternative communication: research and technology development to enhance communication and participation for individuals with complex communication needs. Augment Altern Commun. 2019;35(1):1–12.
  • Beukelman DR, Ball LJ. Improving AAC use for persons with acquired neurogenic disorders: understanding human and engineering factors. Assist Technol. 2002;14(1):33–44.
  • Fried-Oken M, Mooney A, Peters B. Supporting communication for patients with neurodegenerative disease. NeuroRehabilitation. 2015;37(1):69–87.
  • Ball LJ, Beukelman DR, Pattee GL. Acceptance of augmentative and alternative communication technology by persons with amyotrophic lateral sclerosis. Augment Altern Commun. 2004;20(2):113–122.
  • Fried-Oken M, Fox L, Rau MT, et al. Purposes of AAC device use for persons with ALS as reported by caregivers. Augment Altern Commun. 2006;22(3):209–221.
  • Ball LJ, Beukelman DR, Anderson E, et al. Duration of AAC technology use by persons with ALS. J Med Speech Lang Pathol. 2007;15(4):371–381.
  • Makkonen T, Ruottinen H, Korpijaakko-Huuhka AM, et al. Variation in communication strategies in amyotrophic lateral sclerosis during a two-year follow-up. Speech Lang Hear. 2018;21(2):123–130.
  • McNaughton D, Giambalvo F, Kohler K, et al. “Augmentative and alternative communication (AAC) will give you a voice”: key practices in AAC assessment and intervention as described by persons with amyotrophic lateral sclerosis. Semin Speech Lang. 2018;39(5):399–415.
  • RERC on Communication Enhancement. Speech pathologist’s clinical pathway for communication changes with ALS, version 5.3; 2004. Available from: http://aac-rerc.psu.edu/index.php/files/list/type/1
  • American Speech-Language-Hearing Association. Scope of practice in speech-language pathology; 2016. Available from: https://www.asha.org/policy/SP2016-00343/
  • American Speech-Language-Hearing Association. 2019 SLP health care survey: survey summary report: number and type of responses. Rockville, MD; 2019. American Speech-Language-Hearing Association. https://www.asha.org/siteassets/surveys/2019-slp-hc-survey-summary-report.pdf
  • Elliott E, Newton J, Rewaj P, et al. An epidemiological profile of dysarthria incidence and assistive technology use in the living population of people with MND in Scotland. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21(1-2):116–122.
  • Kageyama Y, He X, Shimokawa T, et al. Nationwide survey of 780 Japanese patients with amyotrophic lateral sclerosis: their status and expectations from brain–machine interfaces. J Neurol. 2020;267(10):2932–2940.
  • Linse K, Rüger W, Joos M, et al. Usability of eyetracking computer systems and impact on psychological wellbeing in patients with advanced amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19(3-4):212–219.
  • Malek AM, Stickler DE, Antao VC, et al. The national ALS registry: a recruitment tool for research. Muscle Nerve. 2014;50(5):830–834.
  • Cedarbaum JM, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169(1-2):13–21.
  • Bakker LA, Schröder CD, Tan HH, et al. Development and assessment of the inter-rater and intra-rater reproducibility of a self-administration version of the ALSFRS-R. J Neurol Neurosurg Psychiatry. 2020;91(1):75–81.
  • Cella D, Riley W, Stone A, et al. The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol. 2010;63(11):1179–1194.
  • Peters B. Augmentative and alternative communication use, service delivery experiences, and communicative participation for people with ALS [dissertation]. Portland (OR): Portland State University; 2022.
  • Baylor C, Yorkston K, Eadie T, et al. The communicative participation item bank (CPIB): item bank calibration and development of a disorder-generic short form. J Speech Lang Hear Res. 2013;56(4):1190–1208.
  • R Core Team. R: a language and environment for statistical computing. Vienna: R Foundation for Statistical Computing; 2019. Available from: https://www.R-project.org/
  • Costello J, Smith M. The BCH message banking processTM, voice banking, and double-dippingTM. Augment Altern Commun. 2021;37(4):241–250.
  • Pew Research Center. Demographics of mobile device ownership and adoption in the United States; 2021. Available from: https://www.pewresearch.org/internet/fact-sheet/mobile/
  • Pew Research Center. Share of those 65 and older who are tech users has grown in the past decade; 2022. Available from: https://www.pewresearch.org/fact-tank/2022/01/13/share-of-those-65-and-older-who-are-tech-users-has-grown-in-the-past-decade/
  • Mavrou K, Meletiou-Mavrotheris M, Kärki A, et al. Opportunities and challenges related to ICT and ICT-AT use by people with disabilities: an explorative study into factors that impact on the digital divide. TAD. 2017;29(1-2):63–75.
  • Caron J, Light J. “My world has expanded even though I’m stuck at home”: experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication and social media. Am J Speech Lang Pathol. 2015;24(4):680–695.
  • Ali MA, Alam K, Taylor B. The mediating effect of information and communication technology usages on the nexus between assistive technology and quality of life among people with communication disability. Cyberpsychol Behav Soc Netw. 2020;23(5):338–345.
  • Cave R, Bloch S. Voice banking for people living with motor neurone disease: views and expectations. Int J Lang Commun Disord. 2021;56(1):116–129.
  • Oosthuizen I, Dada S, Bornman J, et al. Message banking: perceptions of persons with motor neuron disease, significant others and clinicians. Int J Speech Lang Pathol. 2018;20(7):756–765.
  • Van De Rijn M, Paganoni S, Levine-Weinberg M, et al. Experience with telemedicine in a multi-disciplinary ALS clinic. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19(1-2):143–148.
  • Bombaci A, Abbadessa G, Trojsi F, et al. Telemedicine for management of patients with amyotrophic lateral sclerosis through COVID-19 tail. Neurol Sci. 2021;42(1):9–13.
  • Roman A, Baylor C, Johnson L, et al. Expanding availability of speech-generating device evaluation and treatment to people with amyotrophic lateral sclerosis (pALS) through telepractice: perspectives of pALS and communication partners. Am J Speech Lang Pathol. 2021;30(5):2098–2114.
  • Raymond J, Oskarsson B, Mehta P, et al. Clinical characteristics of a large cohort of US participants enrolled in the national amyotrophic lateral sclerosis (ALS) registry, 2010-2015. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20(5-6):413–420.
  • Kaye WE, Wagner L, Wu R, et al. Evaluating the completeness of the national ALS registry, United States. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19(1-2):112–117.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.