Judge Simon, Bloch Steven, McDermott Christopher J
a Assistive Technology Team, Barnsley Hospital , Barnsley , UK.
b School of Health and Related Research, University of Sheffield , Sheffield , UK.
Disabil Rehabil Assist Technol. 2019 Oct;14(7):675-681. doi: 10.1080/17483107.2018.1498924. Epub 2018 Oct 4.
To involve people living with amyotrophic lateral sclerosis (plwALS) in the scoping and identification of research priorities related to the changes in ALS communication including the use of augmentative and alternative communication (AAC). Two focus groups of plwALS at early and late stages of change to speech intelligibility were carried out as a patient and participant involvement exercise. The transcriptions of these groups were analyzed thematically and compared between groups. Aspects of anticipation, preparation, adaptation and partnership were identified as key to dealing with communication change as a result of ALS. In particular the involvement of partners was clearly significant, as was the impact on them as well as the plwALS. PlwALS successfully contributed to focus groups and the process of group discussion about communication itself appeared constructive. Research and new interventions should focus further on how to support the partners of plwALS. Future research with plwALS should place AAC strategies and technology in the context of wider communication and investigate how best to support the anticipation, preparation and adaptation to communication change. Specific areas of research need relating to this support are suggested. IMPLICATIONS FOR REHABILITATION People living with ALS (plwALS) are rarely involved in setting the research agenda in the areas of speech and augmentative and alternative communication (AAC). Enabling plwALS to contribute to research, even those with no speech, is feasible with appropriate support. Feedback indicates that communication change and AAC are experienced in different ways by plwALS. Research and intervention should focus on how to support the anticipation, preparation and adaptation to communication change for plwALS.
让肌萎缩侧索硬化症患者（plwALS）参与到与肌萎缩侧索硬化症沟通变化相关的研究重点的界定和确定中来，包括辅助和替代沟通（AAC）的使用。作为患者和参与者参与活动，针对言语清晰度处于早期和晚期变化阶段的plwALS开展了两个焦点小组。对这些小组的记录进行了主题分析，并在小组之间进行了比较。结果发现，预期、准备、适应和伙伴关系等方面是应对肌萎缩侧索硬化症导致的沟通变化的关键。特别是伙伴的参与显然很重要，对他们以及plwALS的影响也是如此。plwALS成功地参与了焦点小组，关于沟通本身的小组讨论过程似乎具有建设性。研究和新的干预措施应进一步关注如何支持plwALS的伙伴。未来针对plwALS的研究应将AAC策略和技术置于更广泛的沟通背景下，并研究如何最好地支持对沟通变化的预期、准备和适应。提出了与这种支持相关的具体研究需求领域。对康复的启示肌萎缩侧索硬化症患者（plwALS）很少参与设定言语和辅助及替代沟通（AAC）领域的研究议程。在适当的支持下，使plwALS即使是那些没有言语的患者也能为研究做出贡献是可行的。反馈表明，plwALS对沟通变化和AAC有不同的体验。研究和干预应关注如何支持plwALS对沟通变化的预期、准备和适应。
