Ushikubo Mitsuko, Nashiki Emiko, Ohtani Tadahiro, Kawabata Hiromi
Graduate School of Health Sciences, Gunma University, Maebashi, Japan.
Nursing Department, Gunma University Hospital, Maebashi, Japan.
Front Psychol. 2021 Sep 16;12:752461. doi: 10.3389/fpsyg.2021.752461. eCollection 2021.
Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disease for which there is currently no cure. This study aimed to explore the situations with which nurses struggled, their implemented practical measures, and the challenges they experienced when caring for patients with ALS comorbid with cognitive impairment (hereinafter, targeted patients). In this qualitative study, we conducted a survey with nurses ( = 121) experienced in caring for ALS patients; the survey contained a free-writing section in which participants described their struggles regarding care delivery for these patients. To collect data on practical measures that nurses had already implemented or wanted to propose regarding care delivery for the targeted patients, we conducted four focus group interviews ( = 22). We used a qualitative inductive approach to extract the categories. Fifty-eight nurses (49.6%) completed the free-writing survey section. The situations in which nurses struggled in care for the targeted patients were organized into three categories: "Patients' strong persistency on specific requirements for nursing assistance in their daily lives," "Patients' problematic behaviors toward nurses," and "Struggles in communicating with and understanding patients' wishes." Nurses reported these situations as stressful, and they affected care quality. The practical measures implemented when caring for the targeted patients were organized into five categories: "Cognitive impairment assessment," "Care delivery to deal with patients' strong persistency on specific requirements for assistance in their daily lives," "Communication," "Supporting the decision-making process," and "Collaboration between the hospital and the community." Multidisciplinary collaboration in the hospital, and collaboration between the hospital and the community from an early stage is necessary to share the results of the assessment and diagnosis of cognitive impairment. Our evidence underlines that guideline and care manual establishment may lead to improved care delivery and to the unification of care deliveries to respond to patients' strong persistency.
肌萎缩侧索硬化症（ALS）是一种毁灭性的神经退行性疾病，目前尚无治愈方法。本研究旨在探讨护士在护理肌萎缩侧索硬化症合并认知障碍患者（以下简称目标患者）时所面临的困难情况、实施的实际措施以及遇到的挑战。在这项定性研究中，我们对有护理ALS患者经验的护士（n = 121）进行了调查；该调查包含一个自由写作部分，参与者在其中描述了他们在为这些患者提供护理时所面临的困难。为了收集护士已经实施或想要提出的针对目标患者护理的实际措施的数据，我们进行了四次焦点小组访谈（n = 22）。我们采用定性归纳法来提取类别。58名护士（49.6%）完成了自由写作调查部分。护士在护理目标患者时面临的困难情况分为三类：“患者对日常生活中护理协助的特定要求的强烈坚持”、“患者对护士的问题行为”以及“与患者沟通和理解患者意愿方面的困难”。护士们表示这些情况会造成压力，并且会影响护理质量。在护理目标患者时实施的实际措施分为五类：“认知障碍评估”、“应对患者对日常生活中协助的特定要求的强烈坚持的护理提供”、“沟通”、“支持决策过程”以及“医院与社区之间的协作”。医院内的多学科协作以及从早期阶段开始的医院与社区之间的协作对于分享认知障碍评估和诊断的结果是必要的。我们的证据强调，制定指南和护理手册可能会改善护理提供，并使护理提供统一起来，以应对患者的强烈坚持。
