La comunicazione come atto complesso nella Sclerosi Laterale Amiotrofica: indagine conoscitiva su paziente e caregiver

Simona Tufoni; Laura Grappini; Isabella Baglioni; Fabio Sarzana; Enrico Ceroni

doi:10.54103/dn/26824

Autori/Autrici

Simona Tufoni UNIVPM https://orcid.org/0009-0001-5161-8412
Laura Grappini Gruppo Zefiro S.P.A., Fermo https://orcid.org/0009-0000-2449-9836
Isabella Baglioni Corso di Laurea in Infermieristica, Sede di Fermo, Università Politecnica delle Marche https://orcid.org/0009-0006-4090-9480
Fabio Sarzana Corso di Laurea in Infermieristica, Sede di Fermo, Università Politecnica delle Marche
Enrico Ceroni Corso di Laurea in Infermieristica, Sede di Fermo, Università Politecnica delle Marche

DOI:

https://doi.org/10.54103/dn/26824

Parole chiave:

Amiotrophic Lateral Schlerosis, Caregivers, Comunicazione, Infermieristica, Infermieri

Abstract

La Sclerosi Laterale Amiotrofica (SLA) è una patologia caratterizzata dalla graduale degenerazione del I e II motoneurone, che progressivamente porta a una paralisi muscolare che crea deficit di movimento, respirazione, deglutizione e fonazione. Diviene difficile per chi ne è affetto comunicare i propri bisogni, esperienze e sensazioni. Da ciò nasce l’esigenza per le persone con SLA ed i loro caregiver di apprendere nuove modalità di comunicazione come la comunicazione aumentativa alternativa (CAA). L’obiettivo dello studio è indagare le difficoltà comunicative tra persona affetta da SLA e caregiver e l’utilizzo di modalità comunicative alternative. È stato somministrato un questionario a 20 persone affette da SLA ed ai loro caregivers (39). Dai dati emersi si riscontra che le difficoltà di comunicazione vengono vissute dalla persona affetta da SLA e dal caregiver, limitando la comunicazione allo stretto necessario. Inoltre, il 50% è in possesso di un mezzo di Comunicazione aumentativa alternativa CAA.

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Riferimenti bibliografici

1 Tomik B, Guiloff RJ. Dysarthria in amyotrophic lateral sclerosis: A review. Amyotroph Lateral Scler. 2010;11(1-2):4-15. doi: 10.3109/17482960802379004. PMID: 20184513.

2 Feldman EL, Goutman SA, Petri S, Mazzini L, Savelieff MG, Shaw PJ, Sobue G. Amyotrophic lateral sclerosis. Lancet. 2022 Oct 15;400(10360):1363-1380. doi: 10.1016/S0140-6736(22)01272-7. Epub 2022 Sep 15. PMID: 36116464; PMCID: PMC10089700.

3 Yorkston K, Baylor C, Mach H. Factors Associated with Communicative Participation in Amyotrophic Lateral Sclerosis. J Speech Lang Hear Res. 2017 Jun 22;60(6S):1791-1797. doi: 10.1044/2017_JSLHR-S-16-0206. PMID: 28655040; PMCID: PMC5544405.

4 Eadie TL, Yorkston KM, Klasner ER, Dudgeon BJ, Deitz JC, Baylor CR, Miller RM, Amtmann D. Measuring communicative participation: a review of self-report instruments in speech-language pathology. Am J Speech Lang Pathol. 2006 Nov;15(4):307-20. doi: 10.1044/1058-0360(2006/030). PMID: 17102143; PMCID: PMC2649949.

5 Cave, R., & Bloch, S. (2021). The use of speech recognition technology by people living with amyotrophic lateral sclerosis: a scoping review. Disability and Rehabilitation: Assistive Technology, 18(7), 1043–1055. https://doi.org/10.1080/17483107.2021.1974961

6 Peters B, Wiedrick J, Baylor C. Effects of Aided Communication on Communicative Participation for People with Amyotrophic Lateral Sclerosis. Am J Speech Lang Pathol. 2023 Jul 10;32(4):1450-1465. doi: 10.1044/2023_AJSLP-22-00346. Epub 2023 Jun 19. PMID: 37335771; PMCID: PMC10473367.

7 Fried-Oken M, Mooney A, Peters B. Supporting communication for patients with neurodegenerative disease. NeuroRehabilitation. 2015;37(1):69-87. doi: 10.3233/NRE-151241. PMID: 26409694; PMCID: PMC6380499.

8 Peters B, O'Brien K, Fried-Oken M. A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States. Disabil Rehabil Assist Technol. 2024 May;19(4):1121-1134. doi: 10.1080/17483107.2022.2149866. Epub 2022 Nov 30. PMID: 36448513

9 Light J, McNaughton D, Beukelman D, Fager SK, Fried-Oken M, Jakobs T, Jakobs E. 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 Mar;35(1):1-12. doi: 10.1080/07434618.2018.1556732. Epub 2019 Jan 16. PMID: 30648903.

10 National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on the Use of Selected Assistive Products and Technologies in Eliminating or Reducing the Effects of Impairments; Flaubert JL, Spicer CM, Jette AM, editors. The Promise of Assistive Technology to Enhance Activity and Work Participation. Washington (DC): National Academies Press (US); 2017 May 9. 6, Augmentative and Alternative Communication and Voice Products and Technologies. Available from: https://www.ncbi.nlm.nih.gov/books/NBK453284/ Beukelman DR & Light J (2020). Augmentative and alternative communication: Supporting children and adults with complex communication needs. Baltimore, MD: Paul H. Brookes Publishing Co.

11 Neto LL, Constantini AC, Chun RYS. Communication vulnerable in patients with Amyotrophic Lateral Sclerosis: A systematic review. NeuroRehabilitation. 2017;40(4):561-568. doi: 10.3233/NRE-171443. PMID: 28222570.

12 Peters B, O'Brien K, Fried-Oken M. A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States. Disabil Rehabil Assist Technol. 2024 May;19(4):1121-1134. doi: 10.1080/17483107.2022.2149866. Epub 2022 Nov 30. PMID: 36448513.

13 Makkonen, T., Ruottinen, H., Korpijaakko-Huuhka, A.-M., & Palmio, J. (2018). Variation in communication strategies in amyotrophic lateral sclerosis during a two-year follow-up. Speech, Language and Hearing, 21(2), 123-130. https://doi.org/10.1080/2050571x.2017.1362719

14 Börjesson, M. S., Hartelius, L., & Laakso, K. (2021). Communicative participation in people with amyotrophic lateral sclerosis. Folia Phoniatrica et Logopaedica, 73(2), 101–108. https://doi.org/10.1159/000505022

15 Broomfield, K., Harrop, D., Jones, G. L., Sage, K., & Judge, S. (2022). A qualitative evidence synthesis of the experiences and perspectives of communicating using augmentative and alternative communication (AAC). Disability and Rehabilitation: Assistive Technology. Advance online publication. https://doi.org/10.1080/17483107.2022.2105961

16 Light J, McNaughton D, Beukelman D, Fager SK, Fried-Oken M, Jakobs T, Jakobs E. 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 Mar;35(1):1-12. doi: 10.1080/07434618.2018.1556732. Epub 2019 Jan 16. PMID: 30648903.

18 Fried-Oken M, Mooney A, Peters B. Supporting communication for patients with neurodegenerative disease. NeuroRehabilitation. 2015;37(1):69-87. doi: 10.3233/NRE-151241. PMID: 26409694; PMCID: PMC6380499.

19 McNaughton D, Giambalvo F, Kohler K, Nazareth G, Caron J, Fager S. "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 Nov;39(5):399-415. doi: 10.1055/s-0038-1669992. Epub 2018 Sep 25. PMID: 30253426.