Abstract

The purpose of this study was to describe the communication patterns of individuals with Amyotrophic Lateral Sclerosis (ALS) as reported from the surviving spouses’ perspectives. Six surviving spouses of people with ALS participated in semi-structured interviews after the deaths of their partners. The interviews were transcribed and coded. Data analysis revealed four primary themes: communication styles, augmentative and alternative communication (AAC) use, decision-making, and lifestyle changes. Spouses described unique changes in communication styles as their partners began to use augmentative communication strategies and devices. AAC devices were described as essential for individuals with ALS with respect to decision making and maintaining social roles. Spouses stated the importance of adapting social activities in order to maintain involvement in the community as well as with family and friends.

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