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

Authors

Simona Tufoni UNIVPM https://orcid.org/0009-0001-5161-8412
Laura Grappini Zefiro Group S.P.A., Fermo, Italy https://orcid.org/0009-0000-2449-9836
Isabella Baglioni Bachelor School of Nursing, Fermo Campus, Università Politecnica delle Marche https://orcid.org/0009-0006-4090-9480
Fabio Sarzana Bachelor School of Nursing, Fermo Campus, Università Politecnica delle Marche
Enrico Ceroni Bachelor School of Nursing, Fermo Campus, Università Politecnica delle Marche

DOI:

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

Keywords:

Amiotrophic Lateral Schlerosis, Communication, Caregivers, Nursing, Nurses

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a condition characterized by the progressive degeneration of upper and lower motor neurons, leading to muscle paralysis and resulting in impairments in movement, respiration, swallowing, and speech. As the disease progresses, individuals with ALS increasingly struggle to communicate their needs, experiences, and emotions. This situation necessitates the adoption of new communication methods, such as Augmentative and Alternative Communication (AAC), by both individuals with ALS and their caregivers. This study aims to explore the communication challenges faced by individuals with ALS and their caregivers, as well as the utilization of alternative communication methods. A questionnaire was administered to 20 individuals with ALS and their 39 caregivers. The findings indicate that communication difficulties are experienced by both individuals with ALS and their caregivers, often restricting communication to essential matters. Additionally, 50% of the participants reported having access to an AAC device.

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References

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