在多学科肌缩侧面硬化诊所获得和接受语音病理学服务:对患者经验和需求的探索性定性研究
Anna Huynh1,2,3,4, Kerry Adams5, Carolina Barnett-Tapia6
1Department of Speech-Language Pathology, University of Toronto, Ontario, Canada.
Journal of speech, language, and hearing research : JSLHR
|September 7, 2023
概括
肌缩侧面硬化症 (ALS) 患者及其护理人员在获得语音语言病理学家 (SLP) 服务方面面临着挑战. 在多学科的ALS诊所中,个性化的护理和早期护理人员的参与对于有效的圆柱状症状管理至关重要.
科学领域:
- 神经学 神经学
- 语音语言病理学 语言病理学
- 患者护理 患者护理
背景情况:
- 肌缩性侧面硬化症 (ALS) 往往呈现出复杂的腹筋和认知障碍.
- 多学科诊所的目标是为ALS患者提供全面的护理.
- 语音语言病理学家 (SLP) 的服务对于管理ALS的凸骨症状至关重要.
研究的目的:
- 探索ALS患者的经验,他们的护理人员关于SLP服务.
- 在多学科的ALS诊所内确定对柱状症状管理的感知需求.
- 了解在专门的ALS环境中获得和接受SLP护理的挑战.
主要方法:
- 使用解释性描述进行定性研究.
- 与患者和/或护理人员进行的7次采访.
- 对面试数据进行主题分析,以确定关键主题.
主要成果:
- 患者和护理人员报告说,他们难以获得和接受SLP服务.
- 认知障碍加剧了获得SLP护理的挑战.
- 参与者希望获得更具体的信息和个性化的护理.
- 在SLP预约中,早期的护理人员参与被认为是必不可少的.
结论:
- 患者和护理人员在SLP服务获取和提供方面面临重大挑战.
- 需要以人为中心的方法来治疗ALS.
- 需要加强SLP对复杂多症状疾病管理的教育.
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