Premium
Everyday Communication Experiences of Persons With Amyotrophic Lateral Sclerosis and Their Caregivers: Implications for Novel Speech Interventions
Author(s) -
Olmstead Annie J.,
Lee Jimin,
Skrzat Sophia,
Simmons Zachary
Publication year - 2025
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.28412
Subject(s) - psychological intervention , dysarthria , amyotrophic lateral sclerosis , intelligibility (philosophy) , psychology , speech language pathology , audiology , medicine , disease , physical therapy , pathology , psychiatry , philosophy , epistemology
ABSTRACT Introduction/Aims Speech intelligibility decline is a common in dysarthria secondary to amyotrophic lateral sclerosis (ALS). However, interventions that focus on improving speech may not be able to counteract decline as the disease progresses. Researchers have suggested interventions that help PALS's communication partners tune their speech perception systems to PALS's production. In the current study, we take a first step to establishing the need and enthusiasm for such interventions on the part of PALS and their caregivers (CPALS). Methods PALS and CPALS recruited from the Greater Philadelphia chapter of the ALS association completed novel questionnaires probing their everyday speech communication and speech intervention experiences. Questions focused especially on changes in communication partners' ability to understand PALS' speech. Both quantitative and qualitative data were recorded. Results PALS ( n = 21) and CPALS ( n = 22) reported speech as a primary mode of communication despite declines in intelligibility. However, most also indicated variability in PALS's speech intelligibility depending on the communication partner, indicating that frequent communication partners were better able to understand PALS's speech. Both groups reported interest in interventions supporting speech intelligibility and were most interested in speech interventions that included PALS and CPALS together. Discussion PALS and especially CPALS in our study expressed interest in speech interventions that involved both parties. Thus, there is both a need for and a desire in the community for interactive speech interventions that support intelligibility. Additionally, our findings lend support to clinical approaches targeting frequent communication partners in addition to PALS.