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Innovations in Nursing Education, Practice and Research: Emphasising Health Literacy. 护理教育、实践和研究的创新:强调健康素养。
IF 2 Q1 NURSING Pub Date : 2026-02-21 DOI: 10.3390/nursrep16020075
Antonio Martínez-Sabater, Elena Chover-Sierra, Carlos Saus-Ortega

Health literacy (HL) is a key determinant of quality, equity, and person-centred healthcare [...].

健康素养(HL)是质量、公平和以人为本的医疗保健的关键决定因素[…]。
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引用次数: 0
Adequacy of the Type of Venous Catheter to the Drug Type and Duration of Treatment: A Cross-Sectional Study. 静脉导管类型对药物类型和治疗时间的适当性:一项横断面研究。
IF 2 Q1 NURSING Pub Date : 2026-02-21 DOI: 10.3390/nursrep16020076
Esther Moreno-Rubio, Carlos Pérez-López, João Carmezim, David Blancas-Altabella, Antonella F Simonetti, Silvia Serda Sanchez, Alejandro Rodríguez-Molinero

Background: Venous catheters are standard devices in clinical practice. However, their use is not exempt from possible errors and complications. In addition, using them effectively is key to avoiding complications such as infection or phlebitis. Objectives: To determine the frequency of appropriate venous catheters chosen based on the drug and treatment duration in hospitalized patients in a region with 154,000 inhabitants. Methods: A cross-sectional design was carried out between 14 and 28 February 2020, in patients with a peripheral or central intravenous catheter admitted to the acute care unit. Variables collected were related to the catheters, patients, and nurses. Results: One hundred and eighty-eight patients were included, with 319 catheters inserted by 68 nurses. Seventeen patients (8.8%) were ruled out due to the lack of data on the medication administered. Finally, data from 171 patients were included in the final analysis, with 297 catheters inserted. Of them, 246 catheters (82.8%) were inadequate. Discussion: In this point-prevalence study, catheter inadequacy affected more than four out of five catheters and was mainly linked to the use of peripheral catheters for high-risk IV medications and/or for treatments extending 7 days or more. Conclusion: The selection of venous catheters in acute care units is not usually adequate since many peripheral catheters are placed in patients who require intravenous medication during a prolonged period or who are receiving risk medication.

背景:静脉导管是临床实践中的标准设备。然而,它们的使用也不能避免可能的错误和并发症。此外,有效使用它们是避免感染或静脉炎等并发症的关键。目的:了解某地区15.4万居民住院患者根据药物和治疗时间选择合适静脉导管的频率。方法:在2020年2月14日至28日期间,在急性护理病房接受外周或中心静脉导管的患者中进行横断面设计。收集的变量与导管、患者和护士有关。结果:共纳入188例患者,68名护士共插入导管319根。17例患者(8.8%)由于缺乏所给药物的数据而被排除。最后,171例患者的数据被纳入最终分析,共插入了297根导管。其中246根导管不足,占82.8%。讨论:在这个点患病率研究中,导管不足影响了超过四分之五的导管,主要与使用外周导管用于高风险静脉药物和/或延长7天或更长时间的治疗有关。结论:急诊病房静脉导管的选择通常不充分,因为许多外周导管被放置在需要长时间静脉用药或正在接受风险药物治疗的患者身上。
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引用次数: 0
Codesigning a Nurse-Led, Large Language Model-Empowered Agent to Increase Hepatitis B Screening and Vaccination for Inclusion Health Populations: A Research Protocol. 共同设计一个由护士主导的大语言模型授权代理,以增加纳入健康人群的乙型肝炎筛查和疫苗接种:一项研究方案。
IF 2 Q1 NURSING Pub Date : 2026-02-19 DOI: 10.3390/nursrep16020074
Caixia Li, Wei Xia, Zheng Zhu, Marques Shek Nam Ng, Xia Fu

Background/Objectives: We aim to codesign and test a nurse-led, large language model-empowered agent to increase hepatitis B screening and vaccination for inclusion health populations. Methods: This study employs a double diamond model-guided codesign methodology. It includes four phases: (i) Discover: To identify intervention targets, a systematic review was undertaken that synthesized 51 factors influencing hepatitis B screening and vaccination among inclusion health populations. A qualitative study will later be conducted to further elucidate specific cultural barriers in the Chinese context. (ii) Define: To delineate effective intervention designs, two systematic reviews were performed, informing the integration of nurse-led intervention components (e.g., counseling, case management, and care coordination) and adaptation of a large language model to address identified intervention targets. (iii) Develop: To codesign an agent, hepatitis B prevention datasets will be constructed with subsequent model adaptations through fine-tuning and retrieval-augmented generation, as well as collaborations among diverse stakeholders. It will facilitate human-agent interactive consultation, intelligent case management, and care coordination, as well as collaborate with a nurse-led multidisciplinary team to manage hepatitis B screening, vaccination, and care linkage. (iv) Deliver: To evaluate and refine the agent, a mixed-methodology will be adopted, encompassing quantitative evaluation of model response, as well as qualitative evaluation of user experience, technical barriers, and potential benefits. Discussion: This intervention is expected to improve hepatitis B screening and vaccination rates among inclusion health populations, thereby enhancing diagnosis, immunity, and care linkage. It will establish a codesign framework for nursing-specific large language models, broadening the impact of nurses on preventive health equity.

背景/目的:我们的目标是共同设计和测试一种由护士主导的、大型语言模型授权的代理,以增加纳入健康人群的乙型肝炎筛查和疫苗接种。方法:本研究采用双菱形模型引导的协同设计方法。它包括四个阶段:(i)发现:为了确定干预目标,对纳入健康人群中影响乙肝筛查和疫苗接种的51个因素进行了系统评价。随后将进行定性研究,以进一步阐明中国背景下的具体文化障碍。(ii)定义:为了描述有效的干预设计,进行了两次系统评价,告知护士主导的干预组成部分(例如,咨询,病例管理和护理协调)的整合和大型语言模型的适应,以解决已确定的干预目标。(iii)开发:为了共同设计药物,将通过微调和检索增强生成,以及不同利益相关者之间的合作,构建乙型肝炎预防数据集,并进行后续模型调整。它将促进人-代理互动咨询、智能病例管理和护理协调,并与护士领导的多学科团队合作,管理乙型肝炎筛查、疫苗接种和护理联系。(iv)交付:为了评价和改进代理,将采用混合方法,包括对模型响应的定量评价,以及对用户体验、技术障碍和潜在利益的定性评价。讨论:该干预措施有望提高纳入健康人群的乙型肝炎筛查和疫苗接种率,从而加强诊断、免疫和护理联系。它将为专门针对护理的大型语言模型建立一个共同设计框架,扩大护士对预防保健公平的影响。
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引用次数: 0
Self-Efficacy and Caregiving Competence in Family Caregivers of Patients Undergoing Renal Replacement Therapy: A Correlational Study. 肾替代治疗患者家庭照护者自我效能感与照护能力的相关研究。
IF 2 Q1 NURSING Pub Date : 2026-02-19 DOI: 10.3390/nursrep16020073
Yolima Judith Llorente Pérez, Jorge Luis Herrera Herrera, Edinson Oyola López, Ivonne Rosario Romero Guzmán, Xiomara España Franco Zuluaga

Background/Objectives: The aim of this study was to determine the relationship between self-efficacy and caregiving competence in family caregivers of patients with chronic kidney disease receiving renal replacement therapy. Methods: This was a quantitative, observational, descriptive, and correlational study, in which a sample of 275 caregivers was obtained through non-probabilistic convenience sampling. Information on the participants was collected using a sociodemographic characterization form, the Revised Caregiver Self-Efficacy Scale, and the Caregiver Competence for Care instrument, short version. Results: Most of the caregivers, with a median age of 50, were women, homemakers, cohabiting in a common-law relationship, with complete or incomplete high school education, in socioeconomic stratum 1, from urban areas, affiliated with the subsidized healthcare system, Catholic, wives of the person they care for, and receiving family support. A high linear correlation (Spearman's Rho = 0.771) was found, which was statistically significant (p < 0.01): the greater the self-efficacy (confidence of the caregiver in performing their work), the greater the competence in caregiving. Conclusions: A positive and significant correlation between self-efficacy and caregiving competence was identified among the participating caregivers. Likewise, variables such as age, length of time as a caregiver, and number of hours per day devoted to caregiving were associated with higher levels of caregiving competence.

背景/目的:本研究旨在探讨接受肾脏替代治疗的慢性肾脏疾病患者的家庭照护者自我效能感与照护能力的关系。方法:采用非概率方便抽样的方法,对275名护理人员进行定量、观察性、描述性和相关性研究。参与者的信息是通过社会人口学特征表、修订的照顾者自我效能量表和简短版本的照顾者护理能力量表收集的。结果:大多数照顾者年龄中位数为50岁,为女性,家庭主妇,同居同居,高中学历或未高中学历,社会经济阶层1,来自城市,隶属于补贴医疗系统,天主教徒,被照顾者的妻子,并接受家庭支持。二者呈高度线性相关(Spearman’s Rho = 0.771),有统计学意义(p < 0.01):自我效能感(照顾者对工作的信心)越高,照顾能力越强。结论:参与调查的照顾者自我效能感与照顾能力之间存在显著正相关。同样,年龄、照顾者的时间长短、每天花在照顾上的时间长短等变量与更高水平的照顾能力有关。
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引用次数: 0
Implementation of Disaster Prevention Education and Maternal and Child Health Handbook Guidance for Pregnant Women in Japanese Medical Institutions: A Pilot Study. 在日本医疗机构实施防灾教育和孕妇妇幼保健手册指南:一项试点研究。
IF 2 Q1 NURSING Pub Date : 2026-02-18 DOI: 10.3390/nursrep16020071
Haruka Iida, Hisao Nakai, Nobuki Shimaoka, Masayo Takada

Background: In disaster-prone countries like Japan, disaster prevention education (DPE) is considered essential for vulnerable populations, including pregnant women. This pilot study aimed to clarify the status of DPE and the use of the Maternal and Child Health Handbook (MCHH) in medical institutions during disasters. Methods: This cross-sectional pilot study was conducted in 2020. An anonymous self-administered questionnaire was distributed to administrators at 101 medical facilities across three Japanese prefectures. Descriptive statistics and Fisher's exact test were used to analyze the implementation of DPE and associated factors, focusing on MCHH guidance (medical history, identification, and carrying the handbook). Results: Of the 28 facilities with valid responses, 9 (32.1%) implemented DPE. There was a tendency for guidance on MCHH usage during disasters to be provided in facilities that were General or Regional Perinatal Medical Centers (n = 5, 83.3%; p = 0.007). Despite limited sample sizes in some categories, the results suggested that specific institutional characteristics influence the provision of disaster preparedness information. Conclusions: While perinatal medical centers are multifaceted and busy, they play an essential role in emphasizing the importance of the MCHH during disasters. Facilities already providing DPE should integrate broader preparedness measures alongside specific MCHH guidance to improve maternal and child safety.

背景:在日本这样的灾害易发国家,防灾教育(DPE)被认为对包括孕妇在内的弱势群体至关重要。这项试点研究的目的是澄清灾害期间医疗机构的DPE状况和《妇幼保健手册》的使用情况。方法:本横断面试点研究于2020年进行。向日本三个县的101个医疗设施的管理人员分发了一份匿名自我填写的问卷。采用描述性统计和Fisher精确检验分析DPE的实施和相关因素,重点关注MCHH指导(病史、鉴定和携带手册)。结果:28家医院中,9家(32.1%)实施了DPE。灾害期间,一般或地区围产期医疗中心的设施更倾向于提供妇幼保健使用指导(n = 5,83.3%; p = 0.007)。尽管某些类别的样本量有限,但结果表明,具体的体制特征影响了备灾信息的提供。结论:虽然围产期医疗中心是多方面和繁忙的,但它们在强调灾害期间妇幼保健的重要性方面发挥了重要作用。已经提供DPE的机构应将更广泛的防范措施与具体的妇幼保健指导结合起来,以改善孕产妇和儿童安全。
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引用次数: 0
Assessing Nursing Students' Readiness to Address Sexual Health: Psychometric and A Mixed-Method Approach. 评估护理学生准备解决性健康:心理测量和混合方法的方法。
IF 2 Q1 NURSING Pub Date : 2026-02-18 DOI: 10.3390/nursrep16020072
Nina Brkić-Jovanović, Bojana Tankosić, Jelena Lukić, Dragana Simin, Dragana Milutinović

Background/Objectives: Sexual health is a crucial yet often overlooked aspect of nursing care, and nursing students often lack the communication skills needed to discuss it. Although several instruments are available to evaluate students' attitudes and barriers, evidence on culturally adapted tools for Serbian nursing students remains limited. Therefore, the study aimed to assess the psychometric properties of the Serbian version of the SA-SH-Ext and to explore nursing students' attitudes and barriers to sexual health communication. Methods: A sequential mixed-methods design was used. A total of 180 nursing students completed the SA-SH-Ext and SABS scales, followed by psychometric analysis including exploratory and confirmatory factor analyses and reliability testing. Semi-structured interviews with 20 students were thematically analysed to explore experiences and communication challenges. Results: Factor analysis yielded a four-factor model with the factors Being Comfortable, Communication with People with Disabilities, Future Patient and Working Relations, and Education and Competence, which explained 60.6% of the variance. The scale demonstrated strong internal consistency. Male and younger students reported higher comfort levels. Qualitative findings revealed discomfort, limited training, and fear of patient reactions, especially when discussing sexual health with older, disabled, or terminally ill patients. Conclusions: The Serbian SA-SH-Ext is a valid and reliable tool for assessing readiness to address sexual health. Despite positive attitudes, students face significant barriers. Integrating structured education into nursing curricula is essential to building competence and reducing stigma around sexual health in clinical practice.

背景/目的:性健康是护理中一个至关重要但经常被忽视的方面,护理学生往往缺乏讨论性健康所需的沟通技巧。尽管有几种工具可用于评估学生的态度和障碍,但针对塞尔维亚护理专业学生的文化适应工具的证据仍然有限。因此,本研究旨在评估塞尔维亚语版SA-SH-Ext的心理测量特性,并探讨护生对性健康沟通的态度和障碍。方法:采用顺序混合方法设计。共有180名护生完成了SA-SH-Ext和SABS量表,随后进行了心理测量分析,包括探索性、验证性因素分析和信度检验。对20名学生的半结构化访谈进行了主题分析,以探索经历和沟通挑战。结果:因子分析得到舒适、与残障人士的沟通、未来病人和工作关系、教育和能力的四因子模型,解释了60.6%的方差。量表表现出较强的内部一致性。男性和年龄较小的学生报告的舒适度更高。定性调查结果显示不适,培训有限,以及对患者反应的恐惧,特别是在与老年人,残疾人或绝症患者讨论性健康时。结论:塞尔维亚SA-SH-Ext是评估性健康准备程度的有效和可靠的工具。尽管态度积极,但学生们面临着巨大的障碍。将结构化教育纳入护理课程对于在临床实践中建立能力和减少对性健康的耻辱感至关重要。
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引用次数: 0
Investigating Associated Factors of Emotional Intelligence (EI) and Its Relationship with Health-Promoting Lifestyles Among Prelicensure Nursing Students. 护生情绪智力相关因素及其与健康促进生活方式的关系研究。
IF 2 Q1 NURSING Pub Date : 2026-02-16 DOI: 10.3390/nursrep16020070
Joanna Hiu Ki Ko, Daniel Yee Tak Fong

Background/objectives: Emotional intelligence (EI) plays an important role in nursing education by supporting competencies such as communication, leadership, resilience, and clinical performance. In contemporary nursing education, students face increasing academic, clinical, and emotional demands, highlighting the need to identify modifiable factors that may be associated with EI and can inform student support strategies. Despite extensive EI research, evidence remains limited and inconsistent regarding how specific health-promoting lifestyle domains and sleep quality relate to EI among prelicensure nursing students. This study aimed to examine factors associated with EI and its relationship with health behaviors among prelicensure nursing students. Methods: A cross-sectional quantitative design was used. A convenience sample of 287 prelicensure nursing students from a local nursing school completed self-report questionnaires: the Schutte Self-report Emotional Intelligence Scale (SSEIS), the Health-Promoting Lifestyle Profile II (HPLP-II), and the Pittsburgh Sleep Quality Index (PSQI). Results: In structured multiphase regression, HPLP-II interpersonal relations (B = 4.42, 95% CI = 1.44 to 7.50, p = 0.004) and spiritual growth (B = 6.59, 95% CI = 3.81 to 9.37, p < 0.001) were positively associated with EI. Poor sleep quality (PSQI > 5) was negatively associated with EI (B = -1.95, 95% CI = -3.88 to -0.01, p = 0.049). Conclusions: Interpersonal relations, spiritual growth, and sleep quality were associated with EI among prelicensure nursing students. These factors may be relevant to consider when designing student support and EI-related educational initiatives; however, longitudinal and intervention studies are needed to clarify directionality and causality.

背景/目的:情绪智力(EI)在护理教育中扮演着重要的角色,它支持诸如沟通、领导、适应能力和临床表现等能力。在当代护理教育中,学生面临着越来越多的学术、临床和情感需求,强调需要识别可能与情商相关的可改变因素,并为学生的支持策略提供信息。尽管对情商进行了广泛的研究,但关于特定的促进健康的生活方式领域和睡眠质量如何与护理预科学生的情商相关的证据仍然有限且不一致。本研究旨在探讨护生情商的相关因素及其与健康行为的关系。方法:采用横断面定量设计。方便抽样287名当地某护理学校护生完成了舒特自我报告情绪智力量表(SSEIS)、健康促进生活方式量表(HPLP-II)和匹兹堡睡眠质量指数(PSQI)自述问卷。结果:在结构化多阶段回归中,HPLP-II人际关系(B = 4.42, 95% CI = 1.44 ~ 7.50, p = 0.004)和精神成长(B = 6.59, 95% CI = 3.81 ~ 9.37, p < 0.001)与EI呈正相关。睡眠质量差(PSQI bbb50)与EI呈负相关(B = -1.95, 95% CI = -3.88 ~ -0.01, p = 0.049)。结论:护生人际关系、精神成长、睡眠质量与情商相关。在设计学生支持和与情商相关的教育活动时,可能需要考虑这些因素;然而,需要纵向和干预研究来阐明方向性和因果关系。
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引用次数: 0
Links Between Staffing and Resource Inadequacy and Missed Nursing Care in an Academic Medical Center (Eastern Province, Saudi Arabia): A Cross-Sectional Study. 在学术医疗中心(沙特阿拉伯东部省)人员配备和资源不足以及护理遗漏之间的联系:一项横断面研究。
IF 2 Q1 NURSING Pub Date : 2026-02-15 DOI: 10.3390/nursrep16020069
Ayat Ali Al-Sawad, Heba Adnan Dardas, Laila Hussain Al-Shawaf, Moudi Ayadah Shammari, Rabab Salman Emshamea, Ezdehar A Al-Barbari, Mohammed Al-Hariri

Background: Missed nursing care, defined as essential patient care that is omitted or delayed, is a growing source of concern due to its effects on healthcare quality and patient safety. Our aims in this study were twofold: first, we examined the extent and types of missed nursing care, and second, we analyzed the relationship between the care missed by hospital nurses and the staffing and resource adequacy in an academic medical center. Methods: A descriptive cross-sectional study was conducted during the period between November 2022 and July 2023. Data were collected using a self-administered questionnaire that comprised items on socio-demographic and work-related characteristics, items on staffing and resource availability, and items from the 'MISSCARE' Survey. Results: The most frequently missed nursing care involved pressure-relieving interventions (Mean = 2.39) and ambulation/mobilization (Mean = 2.27), while medication administration (Mean = 1.60) and glucose monitoring (Mean = 1.56) were missed the least. Labor resource inadequacy (β = 0.315, p < 0.001) and communication and teamwork deficits (β = 0.285, p < 0.001) were positively associated with missed nursing care, whereas staffing and resource adequacy showed an inverse association (β = -0.164, p = 0.006). The model explained 49.8% of the variance in missed nursing care (R2 = 0.498). Conclusions: These findings highlight that missed nursing care is a system-level issue primarily associated with staffing and resource constraints rather than individual characteristics. Improving staffing adequacy, resource availability, and interprofessional collaboration may reduce care omissions and enhance patient safety in Saudi Arabian academic medical centers.

背景:护理遗漏,定义为遗漏或延迟的基本患者护理,由于其对医疗保健质量和患者安全的影响而日益受到关注。本研究的目的有二:一是研究医院护士疏漏护理的程度和类型;二是分析医院护士疏漏护理与学术医疗中心的人员配备和资源充足性之间的关系。方法:在2022年11月至2023年7月期间进行描述性横断面研究。数据是通过一份自我管理的问卷收集的,其中包括社会人口统计和工作相关特征、人员配备和资源可用性以及“MISSCARE”调查的项目。结果:疏漏次数最多的护理包括减压干预(平均2.39)和下床/活动(平均2.27),疏漏次数最少的是给药(平均1.60)和血糖监测(平均1.56)。人力资源不足(β = 0.315, p < 0.001)、沟通和团队合作不足(β = 0.285, p < 0.001)与护理缺失呈正相关,人员配备和资源充足呈负相关(β = -0.164, p = 0.006)。该模型解释了49.8%的护理遗漏方差(R2 = 0.498)。结论:这些研究结果强调,护理缺失是一个系统层面的问题,主要与人员配备和资源限制有关,而不是个人特征。在沙特阿拉伯学术医疗中心,提高人员配备充足性、资源可用性和跨专业合作可以减少护理疏漏,提高患者安全。
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引用次数: 0
Validation of the SCOPETAS Scale for Nursing Professionals in Pediatric Interhospital Transport. 儿科医院间转运护理专业人员SCOPETAS量表的验证。
IF 2 Q1 NURSING Pub Date : 2026-02-14 DOI: 10.3390/nursrep16020067
Marina Medina-Valles, Ana Elisa Laso-Alonso, Alberto Medina-Villanueva, Vicent Modesto-I-Alapont, David Zuazua Rico, Alba Maestro-Gonzalez

Background: Pediatric Interhospital Transport demands highly specialized, coordinated care to ensure safety and continuity across settings. The SCOPETAS scale, recently adapted into Spanish from the Pediatric Transport Triage Tool, has been validated for physicians but not for nurses. Objective: To validate the SCOPETAS scale for use by nursing professionals in Pediatric Interhospital Transport. Methods: A cross-sectional inter-rater reliability study using clinical vignettes was conducted between December 2024 and February 2025 with nurses from eight hospitals within a Spanish autonomous community. Participants applied the SCOPETAS scale to two simulated pediatric transport scenarios. Agreement with physicians' decisions (gold standard) was analyzed using weighted kappa statistics, logistic regression, and ROC curve analysis. Results: A total of 128 nurses participated (91% female; mean age, 39.5 years). Correct team composition decisions were achieved in 91.4% of severe cases and 73.9% of mild cases. Overall concordance with physicians was high. Possession of a Master's degree was inversely associated with decision accuracy. Conclusions: When applied by nurses, the SCOPETAS scale demonstrated strong agreement with physicians' decisions, particularly in severe scenarios. Its implementation may enhance patient safety, optimize resource allocation, and promote nursing autonomy in Pediatric Interhospital Transport, supporting its integration into clinical practice as a validated, evidence-based decision-support tool for pediatric transport triage.

背景:儿科医院间转运需要高度专业化、协调一致的护理,以确保跨环境的安全性和连续性。SCOPETAS量表,最近从儿科运输分类工具改编成西班牙语,已经对医生进行了验证,但对护士没有。目的:验证SCOPETAS量表在儿科医院间转运中的应用。方法:在2024年12月至2025年2月期间,对西班牙自治区八家医院的护士进行了一项采用临床小问卷的横截面量表间可靠性研究。参与者将SCOPETAS量表应用于两个模拟儿科运输场景。采用加权kappa统计、logistic回归和ROC曲线分析对医师决定(金标准)的一致性进行分析。结果:共有128名护士参与,其中女性占91%,平均年龄39.5岁。91.4%的重症病例和73.9%的轻症病例的团队组成决策正确。总体上与医生的一致性较高。拥有硕士学位与决策准确性呈负相关。结论:当护士应用SCOPETAS量表时,它与医生的决定表现出强烈的一致性,特别是在严重的情况下。它的实施可以提高患者安全,优化资源分配,促进儿科医院间转运的护理自主权,支持其作为儿科转运分诊的有效循证决策支持工具整合到临床实践中。
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引用次数: 0
Coping Strategies and Sense of Care Among Parents of Children Affected by Sturge-Weber Syndrome: A Cross-Sectional Study. 斯特奇-韦伯综合征患儿家长的应对策略与关怀意识:一项横断面研究
IF 2 Q1 NURSING Pub Date : 2026-02-14 DOI: 10.3390/nursrep16020066
Hernández de Benito Alberto, Buceta Toro María Isabel, Sanz Guijo María, Serrano Gallardo María Pilar

Background/Objectives: The diagnosis of a rare disease such as Sturge-Weber syndrome (SWS) has a profound emotional impact on parents, who must adapt to an unexpected and complex caregiving role. This study aimed to analyse the sense of caregiving among parents of children with SWS and to identify the coping strategies they adopt. Methods: A cross-sectional descriptive study was conducted with 28 parents of children with SWS in Spain. Data were collected using the Brief COPE inventory and the Finding Meaning Through Caregiving Scale (FMTCS). Descriptive statistics and non-parametric bivariate analyses were performed. Results: Acceptance (mean = 5.14; SD = 0.85) and active coping (mean = 5.07; SD = 1.12) were the most frequently used coping strategies. Higher provisional meaning in caregiving was positively associated with active coping (ρ = 0.423; p = 0.025), acceptance (ρ = 0.562; p = 0.002), and humor (ρ = 0.557; p = 0.002). As children aged, parents reported a greater sense of caregiving meaning (ρ = 0.294; p = 0.049). Conclusions: Parents of children with SWS tend to adopt active and adaptive coping strategies over time, finding increasing meaning in their caregiving role. These findings highlight the importance of nursing-led interventions aimed at supporting parental coping, meaning-making, and emotional well-being in families affected by rare diseases.

背景/目的:斯特奇-韦伯综合征(SWS)等罕见疾病的诊断对父母产生了深远的情感影响,他们必须适应意想不到的复杂照顾角色。本研究旨在分析SWS儿童家长的照顾意识,并探讨他们所采取的应对策略。方法:对西班牙28名SWS患儿家长进行横断面描述性研究。数据收集使用简短的COPE量表和通过照顾发现意义量表(FMTCS)。进行描述性统计和非参数双变量分析。结果:接受(mean = 5.14, SD = 0.85)和积极应对(mean = 5.07, SD = 1.12)是最常用的应对策略。护理中较高的临时意义与积极应对(ρ = 0.423; p = 0.025)、接受(ρ = 0.562; p = 0.002)和幽默(ρ = 0.557; p = 0.002)呈正相关。随着孩子年龄的增长,父母报告了更大的照顾意义感(ρ = 0.294; p = 0.049)。结论:随着时间的推移,SWS儿童的父母倾向于采取积极和适应性的应对策略,他们在照顾角色中的意义越来越大。这些发现强调了护理主导的干预措施的重要性,这些干预措施旨在支持父母应对、意义创造和受罕见疾病影响的家庭的情感健康。
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Nursing Reports
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