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Exploring Perspectives on Stroke Standard Set Data Collection: A Qualitative Descriptive Study. 探索卒中标准组数据收集的视角:定性描述研究。
Pub Date : 2024-12-01 Epub Date: 2024-08-16 DOI: 10.1097/JNN.0000000000000791
Amanda McIntyre, Ovesiri Fueta, Shannon Janzen, Alexander Smith, Matthew Meyer

Abstract: BACKGROUND: The International Consortium on Health Outcome Measurement developed a standard set for stroke (SSS) that includes patient-reported outcome measures to help capture patients' perspectives on their poststroke recovery. The objective of this study was to explore the experiences and perspectives of individuals who collected SSS data from patients who were admitted to hospital for a stroke. METHODS: A qualitative descriptive approach was taken. Semistructured, audio-recorded interviews were conducted with individuals employed at 2 acute neurological inpatient units in Southwestern Ontario, Canada. Interviews were transcribed verbatim and written text responses were analyzed directly. Transcripts were coded line by line and then organized into 5 overarching themes: adoption, acceptance, appropriateness, feasibility, and sustainability. RESULTS: Six interviews were conducted with participants from varying roles (eg, nurses, manager, web developer, social worker, medical clerk). Participants reported that patients were receptive to completing the SSS. Follow-up phone calls provided a significant opportunity to monitor patients' recovery postdischarge. Many patients requested medical guidance and help navigating health and social resources for unmet stroke-related needs. Barriers to consistent SSS assessment included high employee turnover and lack of time, space, or capacity for follow-up. To sustain data collection, a dedicated, financially supported neurological nursing role was suggested. CONCLUSION: Participants were supportive of SSS data collection that could provide monitoring, oversight, and follow-up of stroke patients after discharge from acute care. However, the utility of the dataset is heavily dependent on having the data collection process properly resourced.

摘要:背景:国际健康结果测量联盟(International Consortium on Health Outcome Measurement)制定了一套卒中标准(SSS),其中包括患者报告的结果测量,以帮助捕捉患者对卒中后康复的看法。本研究旨在探讨从因中风入院的患者处收集 SSS 数据的个人的经验和观点。方法:采用定性描述的方法。对加拿大安大略省西南部两家急性神经病住院部的工作人员进行了半结构化录音访谈。对访谈内容进行了逐字记录,并直接分析了书面文字回复。逐行对记录进行编码,然后归纳为 5 个重要主题:采用、接受、适当性、可行性和可持续性。结果:共进行了六次访谈,参与者的角色各不相同(如护士、经理、网络开发人员、社会工作者、医务文员)。参与者表示,患者乐于填写 SSS。随访电话为监测患者出院后的恢复情况提供了重要机会。许多患者要求获得医疗指导和帮助,以获得医疗和社会资源,满足与中风相关的未满足需求。持续进行 SSS 评估的障碍包括员工更替率高以及缺乏时间、空间或能力进行随访。为了持续收集数据,建议设立一个专门的、有资金支持的神经科护理职位。结论:参与者支持收集 SSS 数据,以便对急性期出院后的卒中患者进行监测、监督和随访。然而,数据集的实用性在很大程度上取决于数据收集过程是否有适当的资源支持。
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引用次数: 0
The Relationship Between Social Support and Stress in Family Caregivers of Stroke Patients. 中风患者家庭照顾者的社会支持与压力之间的关系
Pub Date : 2024-12-01 Epub Date: 2024-08-26 DOI: 10.1097/JNN.0000000000000786
Pei-Ru Ou, Mei-Hui Wu, Sheng-Tzung Tsai, Yu-Chin Ma

Abstract: BACKGROUND: Stroke is a significant cause of disability. Family Informal caregivers face numerous stressors. This study examines whether social support during hospitalization would mediate the relationship between care time per day and stress in family caregivers of stroke patients. METHODS: A cross-sectional study design in Taiwan recruited 137 family caregivers. Descriptive information forms, the Caregiver Strain Index, and the Social Support Scale were used to collect data. RESULTS: Social support was negatively correlated with stress ( r = -0.23, P = .006). By contrast, caregiving hours and physical support were significantly associated with psychological stress. Physical support mediated the association between caregiving hours and psychological stress (95% CI = 0.000-0.005), accounting for 22.02% of the total effect. CONCLUSION: Social support decreased family caregiver stress, notably psychological stress, due to prolonged care of 18 hours per day in the hospital. Physical support resources to alleviate caregiver stress.

摘要: 背景:中风是导致残疾的重要原因。家庭非正式照护者面临众多压力。本研究探讨了住院期间的社会支持是否会介导脑卒中患者家庭照护者每天的照护时间与压力之间的关系。方法:本研究采用横断面研究设计,在台湾招募了 137 名家庭照护者。采用描述性信息表、照顾者压力指数和社会支持量表收集数据。结果:社会支持与压力呈负相关(r = -0.23,P = .006)。相比之下,护理时间和身体支持与心理压力显著相关。身体支持在护理时间和心理压力之间起到了中介作用(95% CI = 0.000-0.005),占总效应的 22.02%。结论:社会支持减轻了家庭照顾者的压力,尤其是由于每天在医院长期护理 18 个小时而产生的心理压力。物质支持资源可减轻照顾者的压力。
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引用次数: 0
A Qualitative Study Exploring Experiences in Caregiving for Patients With Advanced Wilson Disease. 一项探索晚期威尔逊病患者护理经验的定性研究。
Pub Date : 2024-12-01 Epub Date: 2024-09-26 DOI: 10.1097/JNN.0000000000000794
Priya Baby, Priya Treesa Thomas, Binesha P, Jobimol J, Gargi S Kumar, Arun M, Nitish Kamble, Ravi Yadav, Pramod K Pal

Abstract: BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.

摘要:背景:威尔逊病(WD)是一种以铜代谢障碍为特征的罕见疾病。该病通常在儿童中确诊,它有几个独特的特征,会给护理者带来不同的体验。该病的晚期阶段相当具有挑战性,而护理人员在这一阶段的护理经验还未得到充分探索。方法:本研究是一项探索性定性调查,通过深入访谈了解在一家三级医院接受神经姑息治疗的晚期 WD 患儿的家庭照顾者的经历。对 7 位家庭护理者的访谈进行了记录、转录,并采用归纳和解释的方法进行了分析。结果:研究中的家庭照护者主要是母亲。出现的主要主题有:作为父母和照顾者、与疾病相关的不确定性、财务影响、了解疾病动态、建设性应对策略以及大家庭网络和社会影响。结论:晚期 WD 患儿家庭照顾者的经历和遭遇是多方面的。他们具有挑战性的经历凸显了扩展支持性服务和神经姑息性护理的必要性,以帮助护理人员和家庭,并引导儿童的治疗和康复过程。
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引用次数: 0
Environmental Enrichment and Health Outcomes Among Low-Grade Glioma Brain Tumor Survivors. 低级别胶质瘤脑肿瘤幸存者的环境富集度与健康结果。
Pub Date : 2024-12-01 Epub Date: 2024-10-24 DOI: 10.1097/JNN.0000000000000793
Karl Cristie F Figuracion, Christine Mac Donald, David Hunt, Tresa McGranahan, Frances M Lewis, Jason Rockhill, Myron Goldberg, Lia M Halasz, Hilaire J Thompson

Abstract: BACKGROUND: Brain tumor survivors who received radiotherapy (RT) are at a disproportionately increased risk of accelerated aging and symptom burden. We aim to examine the association between environmental enrichment (EE) and health outcomes among low-grade glioma survivors who received brain RT. METHODS: The study used a cross-sectional cohort design, enrolling participants approximately 5 years from diagnosis. The construct of EE consisted of social network, physical activity, employment status, and financial stability. Berkman-Syme Social Network Index, International Physical Activity Questionnaire, Vocational Index Scale, and a Socioeconomic Questionnaire were used to measure the construct of EE. Health outcome measures included the Montreal Cognitive Assessment, Symbol Digit Modality Test, clinical brain magnetic resonance images (pre-RT, approximately 2-3 years after RT, and approximately 5 years after RT), Karnofsky Performance Status Scale, and the MD Anderson Symptom Inventory Brain Tumor Module. Ordinal logistic regression estimated the association between levels of EE and health outcomes. RESULTS: Thirty-nine participants completed the study and experienced varying levels of EE. The median age was 44 years old, ranging from 26 to 78 years old. Nineteen individuals were diagnosed with oligodendroglioma, and 18 were diagnosed with astrocytoma. Thirteen participants had low EE, 17 had moderate EE, and 9 had high EE. Although not statistically significant, we observed patterns of increasing health outcomes (Montreal Cognitive Assessment, Symbol Digit Modality Test, and Karnofsky Performance Status Scale) related to increasing levels of EE. CONCLUSION: This study is an initial exploration into the role of EE in health outcomes and survivorship programs for persons with glioma. Future research should assess EE before treatment or at the time of diagnosis and be longitudinal to accurately ascertain the association between EE and health outcomes. Comprehensive neuro-oncology survivorship programs structured to facilitate EE may reduce symptom burden, promote neuroplasticity, and improve cognitive and functional outcomes after brain radiation.

摘要:背景:接受过放射治疗(RT)的脑肿瘤幸存者加速衰老和加重症状负担的风险不成比例地增加。我们旨在研究接受过脑部放疗的低级别胶质瘤幸存者的环境富集(EE)与健康结果之间的关联。方法:研究采用横断面队列设计,从确诊后约 5 年开始招募参与者。EE结构包括社交网络、体育活动、就业状况和经济稳定性。研究采用 Berkman-Syme 社交网络指数、国际体力活动问卷、职业指数量表和社会经济问卷来测量 EE 构建。健康结果测量包括蒙特利尔认知评估、符号数字模型测试、临床脑磁共振图像(RT前、RT后约2-3年和RT后约5年)、Karnofsky表现状态量表和MD安德森症状量表脑肿瘤模块。顺序逻辑回归估计了 EE 水平与健康结果之间的关联。结果:39 名参与者完成了研究,并经历了不同程度的 EE。年龄中位数为 44 岁,从 26 岁到 78 岁不等。19人被诊断为少突胶质细胞瘤,18人被诊断为星形细胞瘤。其中 13 人 EE 值较低,17 人 EE 值中等,9 人 EE 值较高。虽然没有统计学意义,但我们观察到健康结果(蒙特利尔认知评估、符号数字模型测试和卡诺夫斯基表现状态量表)的增加与 EE 水平的增加有关。结论:本研究初步探讨了 EE 在胶质瘤患者的健康结果和生存计划中的作用。未来的研究应在治疗前或诊断时评估 EE,并进行纵向研究,以准确确定 EE 与健康结果之间的关联。为促进EE而设计的全面神经肿瘤学幸存者计划可减轻症状负担、促进神经可塑性并改善脑放射后的认知和功能结果。
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引用次数: 0
Implementation of a Nurse-Initiated Protocol to Improve Enteral Medication Administration Documentation in Stroke Patients. 实施由护士发起的协议,改进脑卒中患者的肠内给药记录。
Pub Date : 2024-12-01 Epub Date: 2024-09-02 DOI: 10.1097/JNN.0000000000000785
John C Drennan, Tiffany O Sheehan, Tracie Schroeder, J Tyler Haller

Abstract: BACKGROUND: Medication documentation falls under the "7 rights" of medication administration, but strategies to prevent medication administration documentation errors (MADEs) related to route of administration are underreported in the literature. This study aimed to report the outcomes of a nurse-initiated protocol designed to prevent MADEs and align both actual and documented medication administration routes in hospitalized stroke patients with feeding tubes (FTs). METHODS: This was a retrospective descriptive study conducted at a Comprehensive Stroke Center and large academic medical center in the Western United States. Adults admitted with the diagnosis of stroke between February 2022 and August 2023, who had an FT on arrival, or placed during admission, and received at least 1 enteral medication ordered for by mouth (PO) administration, were included. The protocol allowed nurses to place a communication order to a pharmacist via the electronic health record, requesting all enteral medications ordered for PO administration be changed to FT administration. RESULTS: There were 481 patients included with a median age of 68 years (interquartile range, 58-76 years). The nurse-initiated protocol was used in 170 patients (35.3%), with 99 patients (58.2%) having all enteral medication orders converted completely by a pharmacist. Of the 170 patients in which the protocol was initiated, 145 (85.3%) had all scheduled enteral medication orders converted. For the 71 patients who did not have all enteral medication orders converted completely, the median number of potential MADEs was 2 (1-4.5). CONCLUSION: A nurse-initiated protocol designed to prevent MADEs and improve the accuracy of actual and documented route of medication administration for patients hospitalized for stroke with FTs had modest use. The nurse-initiated protocol in this study is the first of its kind and may help guide further research on preventing and reducing MADEs.

摘要:背景:用药记录属于用药 "七项权利 "的范畴,但文献中关于预防与给药途径相关的用药记录错误(MADEs)的策略报道不足。本研究旨在报告一项由护士发起的规程的结果,该规程旨在预防 MADE,并使带输液管(FT)的住院脑卒中患者的实际给药途径与记录给药途径保持一致。方法:这是一项在美国西部综合卒中中心和大型学术医疗中心进行的回顾性描述性研究。研究对象包括 2022 年 2 月至 2023 年 8 月期间诊断为脑卒中的成人,他们在到达时或入院时已安装 FT,并接受了至少一种口服 (PO) 肠内给药。该方案允许护士通过电子病历向药剂师下达医嘱,要求将所有口服肠内药物改为FT给药。结果:共纳入 481 名患者,中位年龄为 68 岁(四分位间范围为 58-76 岁)。170名患者(35.3%)使用了护士发起的方案,99名患者(58.2%)的所有肠内用药医嘱完全由药剂师转换。在启动该方案的 170 名患者中,145 名患者(85.3%)转换了所有预定的肠内用药医嘱。在未完全转换所有肠内用药医嘱的 71 名患者中,潜在 MADE 的中位数为 2(1-4.5)。结论:由护士发起的旨在预防 MADE 并提高脑卒中住院 FTs 患者实际用药和记录用药途径准确性的方案使用效果一般。本研究中由护士发起的方案是首个此类方案,有助于指导预防和减少 MADE 的进一步研究。
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引用次数: 0
Implementation of a Novel Seizure Assessment Tool for Unified Seizure Evaluation Improves Nurse Response. 采用新型癫痫发作评估工具进行统一癫痫发作评估可提高护士的反应能力。
Pub Date : 2024-12-01 Epub Date: 2024-09-02 DOI: 10.1097/JNN.0000000000000784
Thanh Cubria, Emerson B Nairon, Jami Landers, Sonia Joseph, Mishu Chandra, Maria E Denbow, Ryan Hays, DaiWai M Olson

Abstract: BACKGROUND: Ictal and postictal testing is an essential aspect of clinical care when diagnosing and treating seizures. The epilepsy monitoring unit (EMU) has standard operating procedures for nursing care during and after seizure events, but there is limited interrater reliability. Streamlining ictal and postictal testing processes may enhance care consistency for patients in the EMU unit. The purpose of this study was to create an ictal and postictal seizure assessment tool that would increase the consistency of nursing assessment for EMU patients. METHODS: This prospective study had 4 phases: baseline assessment, instrument development, staff education, and field testing. During baseline assessment, an advanced practice provider and an epilepsy fellow graded nurse ictal and postictal assessment via survey questions. After instrument development, education, and implementation, the same survey was administered to determine if nursing consistency in assessing seizure events improved. The tool used in this study was created by a team of clinical experts to ensure consistency in the assessment of seizure patients. RESULTS: A total of 58 first seizure events were collected over a 6-month intervention period; 27 in the pretest and 31 in the posttest. Paired t test analyses revealed significant improvement in the clinical testing domains of verbal language function ( P < .005), motor function ( P < .0005), and item assessment order ( P < .005) postintervention. There was nonsignificant improvement in the domains of responsiveness (feeling [ P = .597], using a code word [ P = .093]) and visual language function ( P = .602). CONCLUSION: The data captured in this study support the need for this instrument. There is strong need to increase consistency in assessing seizure events and to promote continued collaboration among clinical teams to enhance care to EMU patients. Validation of this instrument will further improve team collaboration by allowing nurses to contribute to their fullest extent.

摘要:背景:在诊断和治疗癫痫发作时,发作期和发作后检测是临床护理的一个重要方面。癫痫监护病房(EMU)有癫痫发作期间和发作后护理的标准操作程序,但相互之间的可靠性有限。简化发作期和发作后的检测流程可提高 EMU 病房对患者护理的一致性。本研究的目的是创建一种发作期和发作后癫痫评估工具,以提高对急诊监护室患者护理评估的一致性。方法:这项前瞻性研究分为四个阶段:基线评估、工具开发、员工教育和现场测试。在基线评估期间,一名高级医疗服务提供者和一名癫痫研究员通过调查问题对护士的发作期和发作后评估进行评分。在工具开发、教育和实施之后,进行了同样的调查,以确定护士在评估癫痫发作事件时的一致性是否有所改善。本研究中使用的工具由临床专家团队创建,以确保对癫痫发作患者评估的一致性。结果:在为期 6 个月的干预期间,共收集到 58 次首次癫痫发作事件;其中 27 次为前期测试,31 次为后期测试。配对 t 检验分析表明,干预后临床测试领域的口头语言功能(P < .005)、运动功能(P < .0005)和项目评估顺序(P < .005)均有显著改善。在反应能力(感觉 [P = .597]、使用暗语 [P = .093])和视觉语言功能(P = .602)方面则没有明显改善。结论:本研究获得的数据证明了该工具的必要性。我们亟需提高评估癫痫发作事件的一致性,并促进临床团队之间的持续合作,以加强对急诊室患者的护理。该工具的验证将进一步改善团队合作,使护士能够充分发挥其作用。
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引用次数: 0
Development of an Acute Stroke Care Seeking Framework. 制定急性中风护理寻求框架。
Pub Date : 2024-12-01 Epub Date: 2024-08-09 DOI: 10.1097/JNN.0000000000000782
Fiona S Smith, Meagan Whisenant, Constance M Johnson, Jason Burnett, Sean I Savitz, Jennifer E S Beauchamp

Abstract: BACKGROUND: A multitude of variables influence an individual's decision to seek care in emergency situations. By recognizing these variables and their impact on the timeline of an individual seeking care for a stroke, nurses have an opportunity to positively affect the outcomes of stroke within the community. The purpose of this narrative review was to develop a research framework describing the variables involved in care seeking during an acute stroke. METHODS: Using a theory synthesis methodology that included variable identification and the establishment of relationships between variables based on existing literature, a framework describing variables relevant to acute stroke care seeking behavior was developed. RESULTS: Fourteen recently published studies reported significant variables related to seeking emergency medical care during the hyperacute phase of a stroke. Eight variables were identified and characterized as either promoters or distractors. Promoters led an individual to seek acute stroke care earlier, such as perceived symptom severity, stroke knowledge, and the presence of others. Distractors led an individual to delay seeking acute stroke care and resulted in later hospital arrival times, such as a lack of social network or resources, comorbid conditions, and incongruity with the local health system. CONCLUSION: Although individual decision making is exceedingly complex and varies by individual and situation, the developed acute stroke care seeking framework may provide a basis on which to develop stroke awareness programs and interventions targeted at individuals at risk for delayed acute stroke care.

摘要:背景:多种变量影响着个人在紧急情况下寻求护理的决定。通过认识这些变量及其对中风患者就医时间的影响,护士有机会对社区内中风患者的治疗效果产生积极影响。本叙述性综述的目的是建立一个研究框架,描述急性中风就医过程中涉及的变量。方法:利用理论综合方法(包括变量识别和基于现有文献建立变量之间的关系),建立了一个描述急性中风就医行为相关变量的框架。结果:14 项近期发表的研究报告了与中风超急性期寻求急诊相关的重要变量。确定了八个变量,并将其定性为促进因素或干扰因素。促进因素会使患者更早地寻求急性卒中救治,如感知到的症状严重程度、卒中知识及他人在场。干扰因素导致患者延迟寻求急性卒中救治,并导致患者住院时间推迟,如缺乏社会网络或资源、合并症、与当地医疗系统不协调等。结论:虽然个人决策极其复杂,且因人而异、因情况而异,但所制定的急性卒中就医框架可为制定卒中意识计划和干预措施提供依据,这些计划和干预措施主要针对有可能延迟急性卒中就医的人群。
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引用次数: 0
Examining the Effect of Peppermint Oil on Postoperative Nausea After Cervical Surgery. 研究薄荷油对宫颈手术后恶心的影响
Pub Date : 2024-12-01 Epub Date: 2024-10-24 DOI: 10.1097/JNN.0000000000000790
Nurdan Cetin, Gulsah Kose, Aykut Gokbel

Abstract: PURPOSE: The aim of this study was to investigate the effect of peppermint oil aromatherapy on postoperative nausea and vomiting (PONV) and hemodynamic parameters in patients undergoing single-level cervical surgery. METHODS: This prospective randomized controlled study consisted of 76 single-level cervical surgery patients admitted to the neurosurgery department between March 2021 and November 2022. The patients were randomized into 2 groups: the intervention group received peppermint oil aromatherapy through inhalation, whereas the control group received routine clinical treatment. Both groups were observed for the presence and severity of PONV, the use of antiemetics, and hemodynamic parameters at minute 5, 35, 65, and 95, and at hour 2, 6, 12, and 24 after surgery. RESULTS: In the control group, 18 (47.8%) patients experienced nausea, 11 (28.9%) experienced vomiting, and 7 (18.4%) used antiemetics. In contrast, the intervention group included only 2 (5.3%) patients who experienced nausea, and none of those patients experienced vomiting or used antiemetics. It was determined that peppermint oil had a 40% effect on reducing PONV, 34% effect on reducing postoperative antiemetic use, and 75% effect on reducing severity of nausea. Hemodynamic parameters did not differ significantly between the 2 groups. The systolic blood pressure of the control group was significantly greater than that of the intervention group only at minute 95 and at hour 24 after surgery. CONCLUSIONS: The results suggest that the use of peppermint oil aromatherapy can have a positive effect on reducing the presence and severity of PONV and the need for antiemetic medication in patients undergoing single-level cervical surgery.

摘要:目的:本研究旨在探讨薄荷油芳香疗法对单层颈椎手术患者术后恶心呕吐(PONV)和血流动力学参数的影响。方法:这项前瞻性随机对照研究由神经外科在2021年3月至2022年11月期间收治的76名单层颈椎手术患者组成。患者被随机分为两组:干预组通过吸入方式接受薄荷油芳香疗法,而对照组则接受常规临床治疗。观察两组患者术后第 5、35、65 和 95 分钟以及术后第 2、6、12 和 24 小时的 PONV 存在情况和严重程度、止吐药的使用情况以及血液动力学参数。结果:对照组中有 18 名(47.8%)患者出现恶心,11 名(28.9%)患者出现呕吐,7 名(18.4%)患者使用了止吐药。相比之下,干预组中只有 2 名(5.3%)患者出现恶心症状,这些患者均未出现呕吐或使用止吐药。经测定,薄荷油对减少 PONV 有 40% 的效果,对减少术后使用止吐药有 34% 的效果,对减少恶心严重程度有 75% 的效果。两组患者的血液动力学参数差异不大。对照组的收缩压仅在术后第 95 分钟和第 24 小时明显高于干预组。结论:结果表明,使用薄荷油芳香疗法对减少单层颈椎手术患者 PONV 的出现和严重程度以及对止吐药物的需求有积极作用。
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引用次数: 0
RÁPIDO Is a Step in the Right Direction. RÁPIDO 是朝着正确方向迈出的一步。
Pub Date : 2024-12-01 Epub Date: 2024-08-23 DOI: 10.1097/JNN.0000000000000789
Sarah M Ortenzo, Anita Fetzick
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引用次数: 0
Family Caregivers' Experiences of People With Amyotrophic Lateral Sclerosis Undergoing Gastrostomy Tube Feeding. 接受胃管喂养的肌萎缩侧索硬化症患者的家庭护理人员的经历。
Pub Date : 2024-12-01 Epub Date: 2024-09-02 DOI: 10.1097/JNN.0000000000000792
Hyeon Sik Chu, Juyeon Oh

Abstract: INTRODUCTION: In amyotrophic lateral sclerosis (ALS) patients with impaired swallowing function, gastrostomy tube (G-tube) placement is recommended, but significantly increases the caregiving burden on families. This study aimed to describe the experiences of family caregivers of patients with ALS receiving home enteral nutrition through a G-tube. METHOD: Using purposive sampling, 8 family caregivers participated in the study. Data collection was conducted between February 2021 and October 2022 at a university hospital in Seoul, Korea. Semistructured face-to-face interviews were used to collect data until saturation. Data were analyzed using Krippendorff's content analysis approach. RESULTS: Qualitative analysis of the data revealed 3 main themes regarding caregiving. The emerging themes included psychological distress, unmet practical needs, and the struggle to provide care. CONCLUSION: After a G-tube placement, family caregivers experience various emotional stresses and have numerous unmet practical needs. Healthcare professionals caring for people with ALS receiving enteral nutrition should provide a tailored support program that addresses the specific needs of these family caregivers.

摘要:引言:对于吞咽功能受损的肌萎缩侧索硬化症(ALS)患者,建议放置胃造瘘管(G 管),但这会大大增加家庭的护理负担。本研究旨在描述通过 G 管接受家庭肠内营养的 ALS 患者的家庭护理人员的经历。方法:采用目的性抽样,共有 8 位家庭护理人员参与了研究。数据收集于 2021 年 2 月至 2022 年 10 月在韩国首尔的一家大学医院进行。采用半结构式面对面访谈收集数据,直至达到饱和。采用克里彭多夫内容分析法对数据进行分析。结果:对数据的定性分析揭示了有关护理的三大主题。新出现的主题包括心理困扰、未满足的实际需求以及提供护理的挣扎。结论:放置 G 管后,家庭护理人员会经历各种情绪压力,并有许多实际需求未得到满足。照顾接受肠内营养的 ALS 患者的医护人员应针对这些家庭照顾者的特殊需求提供量身定制的支持计划。
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The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses
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