Assisting persons with advanced amyotrophic lateral sclerosis in their leisure engagement and communication needs with a basic technology-aided program

Article type: Research Article

Authors: Lancioni, Giulio E.^{a; *} | Simone, Isabella L.^a | De Caro, Maria F.^a | Singh, Nirbhay N.^b | O’Reilly, Mark F.^c | Sigafoos, Jeff^d | Ferlisi, Gabriele^e | Zullo, Valeria^e | Schirone, Simona^f | Denitto, Floriana^g | Zonno, Nadia^g

Affiliations: [a] University of Bari, Bari, Italy | [b] Medical College of Georgia, Georgia Regents University, Augusta, USA | [c] University of Texas at Austin, TX, USA | [d] Victoria University of Wellington, New Zealand | [e] Lega F. D’Oro Research Center, Osimo, Italy | [f] S. Raffaele Medical Care Center, Modugno, Italy | [g] ISPE Medical Care Center, Mola di Bari, Italy

Correspondence: [*] Address for correspondence: G.E. Lancioni, Department of Neuroscience and Sense Organs, University of Bari, Corso Italia 23, 70121 Bari, Italy. Tel.: +39 0805521410; [email protected]

Abstract: BACKGROUND: Eye-tracking communication devices and brain-computer interfaces are the two resources available to help people with advanced amyotrophic lateral sclerosis (ALS) avoid isolation and passivity. OBJECTIVE: This study was aimed at assessing a technology-aided program (i.e., a third possible resource) for five patients with advanced ALS who needed support for communication and leisure activities. METHODS: The participants were exposed to baseline and intervention conditions. The technology-aided program, which was used during the intervention, (a) included the communication and leisure options that each participant considered important for him or her (e.g., music, videos, statements/requests, and text messaging) and (b) allowed the participant to access those options with minimal responses (e.g., finger movement or eyelid closure) monitored via microswitches. RESULTS: The participants started leisure and communication engagement independently only during the intervention (i.e., when the program was used). The mean percentages of session time spent in those forms of engagement were between about 60 and 80. Preference checks and brief interviews indicated that participants and families liked the program. CONCLUSIONS: The program might be viewed as an additional approach/resource for patients with advanced ALS.

Keywords: Amyotrophic lateral sclerosis, communication, leisure, technology-aided program, microswitches

DOI: 10.3233/NRE-151224

Journal: NeuroRehabilitation, vol. 36, no. 3, pp. 355-365, 2015