Chau Isaac, Stoker Ethan, Gill Jessica, Newton Judith
Anne Rowling Regenerative Neurology Clinic, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, Scotland, United Kingdom.
PLoS One. 2025 Jul 11;20(7):e0319628. doi: 10.1371/journal.pone.0319628. eCollection 2025.
According to the National Institute for Health and Care Excellence, motor neuron disease assessment and management should be a coordinated, clinic-based, multidisciplinary team approach. However, the wellbeing, work experiences, and the alignment with national frameworks and standards of the motor neuron disease (MND) nurses and allied health professionals' workforce are severely underreported and under-researched within the literature. Therefore, this report aimed to capture the workforce and their alignment with national frameworks and standards, and to assess their experiences working as an MND health care professional. A pragmatic research paradigm and a mixed methods approach was employed using a cross-sectional questionnaire survey to collect, compare, and interpret quantitative and qualitative data points. Data was gathered under the remit of an audit and service evaluation under NHS Lothian. Demographics data and work-related characteristics were collected. Job experience and wellbeing were collected using Likert scales and open-ended questions. The level of burnout was assessed using the validated tool, the Burnout Assessment Tool (BAT). Compliance with national frameworks were based on the NICE guidelines and the Scottish MND Advanced Clinical Nurse Specialist Pillars of Practice Competencies. 64 HCPs completed the questionnaire, with the majority of respondents from England (54.7%) and Scotland (35.9%). Education level was mainly having a Bachelors (or equivalent) degree (40%) or a Masters (or equivalent) degree (31%), with the remaining having a diploma-based qualification (29%). The analysis revealed three key themes: the importance of the multi-disciplinary team (MDT), the roles and the level of competencies, and the benefits and challenges in providing direct care. This was associated with 14% and 12% of respondents being at medium and high risk of burnout, respectively. This report highlighted the importance of a collaborative MDT to support the needs of patients, their carers/ family members and HCPs themselves. The workforce found the flexibility, autonomy, and variety within their role beneficial where almost 80% of the respondents engaged in 8 of the 15 competencies. The benefits of providing direct care were found to be associated with feeling valued by the patients, their carers/ family members, and the core and extended MDT, and feeling satisfied about their work. The perceived challenges of providing direct care involved isolation, lack of direct funding, and a high caseload with complex needs and not enough time to provide quality care. It is recommended that a national competency programme or a Masters level course in MND care should be developed to maintain the quality of care, and future research should aim to evaluate the entire workforce longitudinally, address organisational barriers, and explore burnout preventative strategies to maintain a resilient workforce.
根据英国国家卫生与临床优化研究所的说法，运动神经元病的评估与管理应采用基于诊所的多学科团队协作方法。然而，在文献中，运动神经元病（MND）护士及相关健康专业人员的福祉、工作经历以及与国家框架和标准的契合度严重缺乏报道且研究不足。因此，本报告旨在了解这一劳动力群体及其与国家框架和标准的契合度，并评估他们作为MND医护专业人员的工作体验。采用了务实的研究范式和混合方法，通过横断面问卷调查来收集、比较和解释定量与定性数据点。数据是在NHS洛锡安地区的一项审计和服务评估范围内收集的。收集了人口统计学数据和与工作相关的特征。使用李克特量表和开放式问题收集工作经验和福祉情况。使用经过验证的工具——倦怠评估工具（BAT）来评估倦怠程度。对国家框架的遵守情况基于英国国家卫生与临床优化研究所的指南以及苏格兰MND高级临床护士专家实践能力支柱。64名医护人员完成了问卷，大多数受访者来自英格兰（54.7%）和苏格兰（35.9%）。教育水平主要为拥有学士学位（或同等学历）（40%）或硕士学位（或同等学历）（31%），其余拥有基于文凭的资格证书（29%）。分析揭示了三个关键主题：多学科团队（MDT）的重要性、角色和能力水平，以及提供直接护理的益处和挑战。这分别与14%和12%的受访者处于中度和高度倦怠风险相关。本报告强调了协作性多学科团队对于满足患者、其护理人员/家庭成员以及医护人员自身需求的重要性。该劳动力群体发现其角色中的灵活性、自主性和多样性有益，近80%的受访者具备15项能力中的8项。提供直接护理的益处被发现与患者、其护理人员/家庭成员以及核心和扩展多学科团队的重视感相关，以及对工作感到满意。提供直接护理所感知到的挑战包括孤立感、缺乏直接资金、高工作量且需求复杂以及没有足够时间提供高质量护理。建议制定国家能力计划或MND护理硕士水平课程以维持护理质量，未来的研究应旨在纵向评估整个劳动力群体、解决组织障碍，并探索倦怠预防策略以维持有韧性的劳动力群体。
