Lancioni Giulio E, Singh Nirbhay N, O'Reilly Mark F, Sigafoos Jeff, D'Amico Fiora, Ferlisi Gabriele, Zullo Valeria, Denitto Floriana, Lauta Enrico, Abbinante Crescenza, Pesce Caterina V
a Department of Neuroscience and Sense Organs, University of Bari , Bari , Italy.
b Medical College of Georgia, Georgia Regents University , Augusta , GA , USA.
Disabil Rehabil Assist Technol. 2017 Feb;12(2):145-152. doi: 10.3109/17483107.2015.1104561. Epub 2015 Dec 23.
This study assessed (a) the impact of a technology-aided programme on the leisure and communication engagement of persons with advanced amyotrophic lateral sclerosis (ALS) and (b) the opinion of rehabilitation and care personnel regarding the programme.
The programme's impact was assessed with four participants who were allowed to activate leisure and communication options through basic responses (e.g. knee, finger or lip movements) and microswitches. Forty-two care and health professionals rated the programme after watching video clips of persons with ALS (three of the four involved in this study and three involved in previous studies) during and outside of the programme.
The programme was effective with all participants. Their mean percentages of session time with independently initiated leisure and communication engagements were zero during baseline and increased to between nearly 70 and 80 during the intervention. The care and health professionals rated the technology-aided programme as beneficial for the participants' positive engagement and social image, fairly practical for daily contexts and interesting from a personal standpoint.
The programme might be viewed as a viable resource for persons with advanced ALS. Implications for Rehabilitation A programme characterised by versatility, simplicity and relatively low cost could be considered practically relevant for persons with ALS and their contexts. A programme that is effective in fostering participants' independent leisure and communication engagement and is positively rated by care and rehabilitation personnel is more likely to be accepted and used with consistency. Any programme directed at persons affected by ALS needs to be adapted to the persons' progressive deterioration, starting from the response and microswitch used for accessing the programme's options.
本研究评估了（a）一项技术辅助计划对晚期肌萎缩侧索硬化症（ALS）患者休闲和交流参与度的影响，以及（b）康复和护理人员对该计划的看法。
该计划的影响通过四名参与者进行评估，他们被允许通过基本反应（如膝盖、手指或嘴唇运动）和微动开关激活休闲和交流选项。四十二名护理和健康专业人员在观看ALS患者（本研究涉及的四名患者中的三名以及之前研究中的三名）在该计划期间和计划之外的视频片段后对该计划进行了评分。
该计划对所有参与者均有效。在基线期间，他们独立发起休闲和交流活动的平均会话时间百分比为零，在干预期间增加到近70%至80%之间。护理和健康专业人员认为该技术辅助计划对参与者的积极参与和社会形象有益，在日常环境中相当实用，从个人角度来看也很有趣。
该计划可能被视为晚期ALS患者的可行资源。对康复的启示 一个具有多功能性、简单性和相对低成本特点的计划，对于ALS患者及其生活环境可能具有实际意义。一个能有效促进参与者独立休闲和交流参与且得到护理和康复人员积极评价的计划，更有可能被接受并持续使用。任何针对ALS患者的计划都需要根据患者的病情进展进行调整，从用于访问计划选项的反应和微动开关开始。
