impact

影响
  • 文章类型: Journal Article
    新护士的定向计划在为临床实践中的挑战做好准备方面起着至关重要的作用。不同的国家在组织这些计划时采用了不同的计划组成部分和持续时间。
    要探索程序组件,影响,以及医院护理环境中新毕业护士的入职培训计划的持续时间。
    我们收集了在不同国家进行的研究的信息。在包括PubMed在内的数据库上进行了搜索,SageJournal,ScienceDirect,EBSCO,和Wiley,从2018年到2023年,使用Arkey和O\'Malley的审查范围框架进行二次搜索。纳入标准包括具有主要数据的研究,定性和定量,专注于在医院接受迎新计划的新护士。
    在筛选的989篇文章中,14人被包括在内。确定的方法包括提供实践经验,分享信息,反思工作经历,和发展技术技能。重要发现包括提高能力,知识,信心,和满意,以及专业发展和积极的组织影响。定向计划的持续时间从2周到2年不等,根据项目类型和新的研究生护士需求。
    此范围审查阐明了程序组件,影响,以及医院新护士入职培训计划的持续时间,为医院管理在设计和开发改进计划方面提供有价值的见解。
    探索程序组件,影响,以及新的研究生护士培训计划的持续时间,揭示见解,以加强患者护理和护理实践@Ns_Ernawaty。
    UNASSIGNED: Orientation programs for new nurses play an essential role in preparing them for challenges in clinical practice. Different countries have applied varying program components and durations in organizing these programs.
    UNASSIGNED: To explore the program components, impact, and duration of the orientation programs for new graduate nurses in hospital care settings.
    UNASSIGNED: We gathered information from studies conducted in various countries. Searches were conducted on databases including PubMed, Sage Journal, ScienceDirect, EBSCO, and Wiley, with secondary searches from 2018 to 2023 using Arkey and O\'Malley\'s Review Scoping Framework. The inclusion criteria comprised studies with primary data, both qualitative and quantitative, focusing on new nurses undergoing orientation programs in hospitals.
    UNASSIGNED: Of the 989 articles screened, 14 were included. Methods identified included providing hands-on experience, sharing information, reflecting on work experiences, and developing technical skills. Significant findings encompassed increased competence, knowledge, confidence, and satisfaction, as well as professional development and positive organizational impacts. The duration of orientation programs ranged from 2 weeks to 2 years, depending on the program type and new graduate nurse needs.
    UNASSIGNED: This scoping review elucidates program components, impact, and duration of new nurse orientation programs in hospitals, providing valuable insights for hospital management in designing and developing improved programs.
    UNASSIGNED: Exploring program components, impact, and duration of hopitals new graduate nurse orientation programs, revealing insights to enhance patient care and nursing practice@Ns_Ernawaty.
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  • 文章类型: Journal Article
    背景:COVID-19大流行扰乱了常规医疗保健,对癌症等非COVID疾病有潜在影响。为了确保肿瘤护理的连续性,指导方针暂时适应。
    目的:评估COVID-19疫情对荷兰膀胱癌治疗的影响。
    方法:根据荷兰癌症登记处(NCR)的初步数据,将2020-2021年期间每月诊断膀胱癌(BC)的数量与2018-2019年进行了比较。此外,我们从NCR检索了2020年3月1日至5月31日(第一次COVID波)至2018-2019年(参考队列)期间诊断的队列的详细数据.BC诊断,诊断时年龄和阶段的变化,并比较两个时期的一线治疗时间。使用逻辑回归评估治疗的变化。
    结果:在第一次COVID波中(第9-22周),BC的诊断数量减少了14%,对应于大约300个诊断,但在2020年下半年再次增加。从第13周开始,在≥70岁的患者和非肌肉侵入性BC患者中,下降最为明显。肌肉浸润性疾病患者在第17-22周接受根治性膀胱切除术(RC)的可能性较小(OR=0.62,95%CI=0.40-0.97)。疫情开始后不久,新辅助化疗的使用率从34%降至25%,但这种(非显著)效应在4月底消失.在第一波中,与前几年相比,进行的RC增加了5%。从诊断到RC的时间缩短了6天。总的来说,在2020年,RCs减少了7%。
    结论:在第一次COVID波中,BC诊断的数量急剧下降了14%,但到2020年底再次增加到COVID前水平(即600次诊断/月)。与治疗相关的变化仍然有限,并遵循适应的指南。在第一波期间手术体积没有受到损害。总之,第一次COVID-19疫情对荷兰膀胱癌治疗的影响似乎没有其他实体肿瘤的报道那么明显,在荷兰和国外。然而,它对膀胱癌分期转移和长期结果的影响,以及后来的大流行浪潮迄今仍未得到审查。
    BACKGROUND: The COVID-19 pandemic has disrupted regular health care with potential consequences for non-COVID diseases like cancer. To ensure continuity of oncological care, guidelines were temporarily adapted.
    OBJECTIVE: To evaluate the impact of the COVID-19 outbreak on bladder cancer care in the Netherlands.
    METHODS: The number of bladder cancer (BC) diagnoses per month during 2020-2021 was compared to 2018-2019 based on preliminary data from the Netherlands Cancer Registry (NCR). Additionally, detailed data were retrieved from the NCR for the cohort diagnosed between March 1st-May 31st 2020 (first COVID wave) and 2018-2019 (reference cohort). BC diagnoses, changes in age and stage at diagnosis, and time to first-line treatment were compared between both periods. Changes in treatment were evaluated using logistic regression.
    RESULTS: During the first COVID wave (week 9-22), the number of BC diagnoses decreased by 14%, corresponding with approximately 300 diagnoses, but increased again in the second half of 2020. The decline was most pronounced from week 13 onwards in patients≥70 years and patients with non-muscle invasive BC. Patients with muscle-invasive disease were less likely to undergo a radical cystectomy (RC) in week 17-22 (OR = 0.62, 95% CI = 0.40-0.97). Shortly after the start of the outbreak, use of neoadjuvant chemotherapy decreased from 34% to 25% but this (non-significant) effect disappeared at the end of April. During the first wave, 5% more RCs were performed compared to previous years. Time from diagnosis to RC became 6 days shorter. Overall, a 7% reduction in RCs was observed in 2020.
    CONCLUSIONS: The number of BC diagnoses decreased steeply by 14% during the first COVID wave but increased again to pre-COVID levels by the end of 2020 (i.e. 600 diagnoses/month). Treatment-related changes remained limited and followed the adapted guidelines. Surgical volume was not compromised during the first wave. Altogether, the impact of the first COVID-19 outbreak on bladder cancer care in the Netherlands appears to be less pronounced than was reported for other solid tumors, both in the Netherlands and abroad. However, its impact on bladder cancer stage shift and long-term outcomes, as well as later pandemic waves remain so far unexamined.
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  • 文章类型: Journal Article
    背景:莱索托的产妇死亡率很高(566/100,000活产)和5岁以下儿童死亡率(72.9/1000活产)。2013年的一项国家评估发现,卫生部的集中式医疗保健管理导致了分散,区卫生队伍管理不力。2014年通过卫生部与卫生部合作伙伴之间的合作启动,莱索托的初级卫生保健改革(LPHCR)旨在通过将医疗保健管理下放给地区一级来提高服务质量和数量。我们进行了一项定性研究,以探讨卫生工作者对LPHCR在增强初级卫生保健系统中的有效性的看法。
    方法:我们对莱索托各级卫生系统的医护人员和卫生部官员进行了21次半结构化关键线人访谈(KII),包括中央卫生部,地区卫生管理团队,健康中心,以及LPHCR倡议四个试点地区的社区卫生工作者计划。世界卫生组织的卫生系统构建块框架用于指导数据收集和分析。访谈评估了卫生保健工作者对LPHCR倡议对六个卫生系统组成部分的影响的看法:服务提供,卫生信息系统,获得基本药物,卫生劳动力,融资,领导/治理。使用定向内容分析对数据进行分析。
    结果:参与者描述了权力下放的好处,包括提高服务交付效率,加强问责制和响应能力,增加社区参与,提高数据可用性,和更好的资源分配。与会者强调了改革如何导致更有效的采购和分配过程以及部分由于地区卫生管理小组的赋权而提高的认可和地位。然而,与会者还确定了财务决策的权力下放有限,并遇到了成功实施的障碍,例如员工短缺,对乡村卫生工作者计划的管理不足,在利用和调动捐助资金的自主权方面缺乏明确的沟通。
    结论:我们的研究结果表明,在莱索托实施分散的初级卫生保健管理对与初级卫生保健相关的卫生系统构件产生了积极影响。然而,至关重要的是,要解决医疗工作者确定的实施挑战,以优化分散医疗管理的好处。
    BACKGROUND: Lesotho experienced high rates of maternal (566/100,000 live births) and under-five mortality (72.9/1000 live births). A 2013 national assessment found centralized healthcare management in Ministry of Health led to fragmented, ineffective district health team management. Launched in 2014 through collaboration between the Ministry of Health and Partners In Health, Lesotho\'s Primary Health Care Reform (LPHCR) aimed to improve service quality and quantity by decentralizing healthcare management to the district level. We conducted a qualitative study to explore health workers\' perceptions regarding the effectiveness of LPHCR in enhancing the primary health care system.
    METHODS: We conducted 21 semi-structured key informant interviews (KII) with healthcare workers and Ministry of Health officials purposively sampled from various levels of Lesotho\'s health system, including the central Ministry of Health, district health management teams, health centers, and community health worker programs in four pilot districts of the LPHCR initiative. The World Health Organization\'s health systems building blocks framework was used to guide data collection and analysis. Interviews assessed health care workers\' perspectives on the impact of the LPHCR initiative on the six-health system building blocks: service delivery, health information systems, access to essential medicines, health workforce, financing, and leadership/governance. Data were analyzed using directed content analysis.
    RESULTS: Participants described benefits of decentralization, including improved efficiency in service delivery, enhanced accountability and responsiveness, increased community participation, improved data availability, and better resource allocation. Participants highlighted how the reform resulted in more efficient procurement and distribution processes and increased recognition and status in part due to the empowerment of district health management teams. However, participants also identified limited decentralization of financial decision-making and encountered barriers to successful implementation, such as staff shortages, inadequate management of the village health worker program, and a lack of clear communication regarding autonomy in utilizing and mobilizing donor funds.
    CONCLUSIONS: Our study findings indicate that the implementation of decentralized primary health care management in Lesotho was associated a positive impact on health system building blocks related to primary health care. However, it is crucial to address the implementation challenges identified by healthcare workers to optimize the benefits of decentralized healthcare management.
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  • 文章类型: Journal Article
    重症监护病房(ICU)患者报告不寻常的主观经历并不罕见,从与环境和谐的感觉到诸如濒死体验(NDE)之类的复杂现象。这项为期1年的随访研究调查了ICU幸存者召回的NDE记忆的特征和潜在的全球影响。
    我们前瞻性登记了126名长期(>7天)ICU住院的成年幸存者(所有病因),包括19名(15%)报告了GreysonNDE量表确定的NDE。一个月后,NDE小组进行了半结构化访谈,评估了他们的记忆特征和相关的危及生命的情况。纳入后一年,我们联系了所有患者(无论他们是否召回了NDE)进行随访GreysonNDE量表评估,并询问他们的ICU治疗经历和出院后对死亡的看法.
    GreysonNDE量表显示,最常报告的特征是时间知觉改变,提高感官和生活回顾,格雷森的总分并没有随着时间的推移而变化。NDE记忆持续存在,具有随之而来的许多现象学特征(例如,视觉细节,emotions).ICU后一年,NDE组的两名患者(18%)和非NDE组的12名患者(24%)对死亡的恐惧较少。
    结果强调了在ICU住院后对所有ICU患者进行访谈以探索任何记忆的临床重要性。
    UNASSIGNED: It is not rare that intensive care unit (ICU) patients report unusual subjective experiences, ranging from a feeling of harmony with the environment to complex phenomena such as near-death experience (NDE). This 1-year follow-up study investigates the characteristics and potential global impact of the NDE memories recalled by ICU survivors.
    UNASSIGNED: We prospectively enrolled 126 adult survivors of a prolonged (>7days) ICU stay (all etiologies), including 19 (15 %) who reported a NDE as identified by the Greyson NDE scale. The NDE group underwent a semi-structured interview one month later evaluating their memory characteristics and the associated life-threatening situation. One year after inclusion, all patients (regardless of whether they recalled an NDE) were contacted for a follow-up Greyson NDE scale assessment and questions about their ICU experience and opinions on death since discharge.
    UNASSIGNED: The Greyson NDE scale revealed that the most frequently reported features were altered time perception, heightened senses and life review, and the Greyson total scores did not evolve over time. NDE memories persisted, with a consequent number of phenomenological characteristics (e.g., visual details, emotions). One year post-ICU, two patients (18 %) of the NDE group and 12 (24 %) of the non-NDE group were less afraid of death.
    UNASSIGNED: Results emphasize the clinical importance of interviewing all ICU patients to explore any memory after an ICU stay.
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  • 文章类型: Journal Article
    药物短缺对医疗保健系统的全球影响是一个需要紧急关注的问题。这些短缺不仅危及病人的护理,公共卫生,但由于儿科人群的特定药物要求和脆弱性,也给他们带来了明显的挑战。必须解决这一问题,以保障这一特定年龄组的健康和福祉。这篇综述旨在对2014年至2024年儿科护理中解决药物短缺的策略进行系统分析。搜索包括五个数据库:PubMed,Reaxys,Embase,Scopus,和科学直接,使用关键字“药物短缺”和“儿科”。最终方案是根据“PRISMA2020声明:报告系统审查的更新指南”中概述的指南制定的。总的来说,已确定234种出版物。在筛选搜索结果并应用纳入和排除措施后,共纳入27篇原创研究论文。主要发现表明,植根于风险管理的综合方法可以显着减轻儿科环境中的药物短缺。这种方法应解决潜在的原因,如制造商和交货方面的挑战,并通过加强预测和警惕的短缺监测来注重预防。最普遍的反应涉及寻求替代治疗方案。必须落实体制和国家准则,促进沟通,和提供者教育,并尽量减少浪费,以有效缓解儿科环境中的药物短缺。
    The global impact of drug shortages on healthcare systems is a concerning issue that needs urgent attention. These shortages not only jeopardize patient care, public health, and healthcare delivery but also pose distinct challenges for pediatric populations due to their specific medication requirements and vulnerabilities. It is imperative to address this issue to safeguard the health and wellbeing of this specific age group. This review Gaimed to conduct a systematic analysis of strategies for addressing drug shortages in pediatric care from 2014 to 2024. The search included five databases: PubMed, Reaxys, Embase, Scopus, and Science Direct, using the keywords \"drug shortage\" and \"pediatric\". The final protocol was developed following the guidelines outlined in the \" The PRISMA 2020 statement: An updated guideline for reporting systematic reviews\". In total, 234 publications were identified. After screening the search results and applying inclusion and exclusion measures, a total of 27 original research papers were included. The primary finding indicates that a comprehensive approach rooted in risk management can significantly mitigate drug shortages in pediatric settings. This approach should address underlying causes such as manufacturer and delivery challenges and focus on prevention through enhanced forecasting and vigilant shortage monitoring. The most prevalent response involved seeking alternative treatment options. It is imperative to implement institutional and national guidelines, foster communication, and provider education, and minimize waste to effectively mitigate drug shortages in pediatric settings.
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  • 文章类型: Journal Article
    背景:科学研究和创新可以通过不同的途径产生社会影响。生产性互动,例如研究人员和相关利益相关者之间的合作,发挥着重要作用,并越来越受到全球卫生资助者的关注。什么工作,在研究伙伴关系中如何以及为什么在知识利用方面产生社会影响仍然不为人所知。为了探讨这些问题,荷兰卫生研究与发展组织(ZonMw)发起了一项探索性研究,重点是他们在公共卫生和医疗保健领域资助的参与性知识基础设施(PKI)。公钥基础设施是可持续的基础设施,在这些基础设施中,知识生产,传播和利用是通过研究人员和政策利益相关者之间的坚定合作进行的,实践和/或教育。例如学习网络,学术合作中心,护理网络和生活实验室。这项研究的目的是双重的:深入了解什么是PKI的有效合作;学习和改进研究治理,特别是作为其传播和实施活动的一部分的ZonMw。
    方法:在2020-2022年期间,我们对长期研究合作伙伴关系进行了文献综述,分析了20个ZonMw资助的PKI的现有文件,对2021年欧洲实施活动的参与者进行了调查,接受采访的指导委员会成员,与讲师一起组织了一个小组决策室,并与关键专家验证了研究结果。
    结果:我们确定了八种机制(“如何和为什么”),这些机制是PKI中有效合作的条件:跨学科合作;定义共同的抱负;公正对待每个人的利益;投资个人关系;专业组织或结构;有意义的协作过程;相互信任,有足够的时间和连续性的合作。几个因素(“什么”)可能会阻碍(例如,缺乏所有权或结构性资金)或便利(例如,利益相关者的承诺,组织或政策中的嵌入)研究伙伴关系中的有效合作。
    结论:为了在政策中使用研究结果,实践,教育,和/或(进一步)研究,需要改变所有利益相关者的文化和行为。为了促进这一点,我们为资助组织提供建议,特别是ZonMw及其在相关知识生态系统中的合作伙伴。它旨在作为未来几年实现和展示(健康)研究和创新的社会影响的路线图。
    BACKGROUND: Scientific research and innovation can generate societal impact via different pathways. Productive interactions, such as collaboration between researchers and relevant stakeholders, play an important role and have increasingly gained interest of health funders around the globe. What works, how and why in research partnerships to generate societal impact in terms of knowledge utilisation is still not well-known. To explore these issues, the Netherlands Organization for Health Research and Development (ZonMw) initiated an exploratory research-on-research study with a focus on participatory knowledge infrastructures (PKIs) that they fund in the field of public health and healthcare. PKIs are sustainable infrastructures in which knowledge production, dissemination and utilisation takes place via committed collaboration between researchers and stakeholders from policy, practice and/or education. Examples are learning networks, academic collaborative centres, care networks and living labs. The aim of the study was twofold: to gain insights in what constitutes effective collaboration in PKIs; and to learn and improve the research governance, particularly of ZonMw as part of their dissemination and implementation activities.
    METHODS: During 2020-2022, we conducted a literature review on long-term research partnerships, analysed available documentation of twenty ZonMw-funded PKIs, surveyed participants of the 2021 European Implementation Event, interviewed steering committee members, organized a Group Decision Room with lecturers, and validated the findings with key experts.
    RESULTS: We identified eight mechanisms (\'how and why\') that are conditional for effective collaboration in PKIs: transdisciplinary collaboration; defining a shared ambition; doing justice to everyone\'s interests; investing in personal relationships; a professional organisation or structure; a meaningful collaborative process; mutual trust, sufficient time for and continuity of collaboration. Several factors (\'what\') may hinder (e.g., lack of ownership or structural funding) or facilitate (e.g., stakeholder commitment, embeddedness in an organisation or policy) effective collaboration in research partnerships.
    CONCLUSIONS: To use the study results in policy, practice, education, and/or (further) research, cultural and behavioural change of all stakeholders is needed. To facilitate this, we provide recommendations for funding organisations, particularly ZonMw and its partners within the relevant knowledge ecosystem. It is meant as a roadmap towards the realisation and demonstration of societal impact of (health) research and innovation in the upcoming years.
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  • 文章类型: Journal Article
    4组分脑膜炎球菌血清群B(MenB)疫苗,4CMenB,第一个广泛保护性的,基于蛋白质的MenB疫苗将获得许可,现已在全球50多个国家注册。过去十年的真实世界证据(RWE)证实了它的有效性和影响,婴儿免疫计划显示,针对侵袭性MenB疾病的疫苗效力为71-95%,并且对非B血清群具有交叉保护作用,包括在英格兰符合4CMenB标准的队列中,血清群W病例减少了69%。来自不同国家的RWE也证明了在青少年中额外适度保护淋病的潜力。4CMenB的实际安全性与许可前报告一致。使用针对110种MenB菌株的内源性补体人血清杀菌抗体(enc-hSBA)测定可以评估多组分MenB疫苗在临床试验环境中的免疫学有效性。需要公平获得4CMenB疫苗接种,以更好地保护所有年龄组,包括老年人,通过综合免疫政策和弱势群体。
    侵袭性脑膜炎球菌病,由脑膜炎奈瑟菌(脑膜炎球菌)引起,是罕见的,但往往是毁灭性的,可能是致命的。有有效的疫苗,包括针对脑膜炎球菌血清群B疾病的疫苗。2013年,4组分脑膜炎球菌血清群B疫苗,4CMenB,成为第一个广泛保护的,基于蛋白质的针对血清群B的疫苗将获得许可,第二种(二价疫苗,MenB-FHbp)第二年获得许可。4CMenB现已在50多个国家注册,在大多数情况下,适用于婴儿和所有年龄组。在美国,它适用于10-25岁的个人。过去十年免疫计划的证据,比较接种疫苗和未接种疫苗的个体以及接种疫苗前后的相同人群,证实了4CMenB对血清群B疾病的有效性和积极影响。这也证明4CMenB可以提供针对由其他脑膜炎球菌血清群引起的侵袭性疾病的保护。此外,脑膜炎奈瑟菌与引起淋病的细菌密切相关,淋病奈瑟菌,和新兴的现实世界的证据表明,4CMenB提供额外的中度保护对淋球菌疾病。4CMenB给大量婴儿时的安全性,孩子们,青少年,成年人与许可前报告的4CMenB安全概况一致。为了未来,解决建议管理4CMenB的国家指南之间的差异将是有益的,特别是在有流行病学支持性证据但没有公平接种疫苗的情况下。还需要用于评估脑膜炎球菌血清群B疫苗在临床试验中的潜在有效性的新测定法,因为在人群中传播的血清群B菌株在不同国家之间非常多样化。
    The 4-component meningococcal serogroup B (MenB) vaccine, 4CMenB, the first broadly protective, protein-based MenB vaccine to be licensed, is now registered in more than 50 countries worldwide. Real-world evidence (RWE) from the last decade confirms its effectiveness and impact, with infant immunization programs showing vaccine effectiveness of 71-95% against invasive MenB disease and cross-protection against non-B serogroups, including a 69% decrease in serogroup W cases in 4CMenB-eligible cohorts in England. RWE from different countries also demonstrates the potential for additional moderate protection against gonorrhea in adolescents. The real-world safety profile of 4CMenB is consistent with prelicensure reports. Use of the endogenous complement human serum bactericidal antibody (enc-hSBA) assay against 110 MenB strains may enable assessment of the immunological effectiveness of multicomponent MenB vaccines in clinical trial settings. Equitable access to 4CMenB vaccination is required to better protect all age groups, including older adults, and vulnerable groups through comprehensive immunization policies.
    Invasive meningococcal disease, caused by the bacterium Neisseria meningitidis(meningococcus), is rare but often devastating and can be deadly. Effective vaccines are available, including vaccines against meningococcal serogroup B disease. In 2013, the 4-component meningococcal serogroup B vaccine, 4CMenB, became the first broadly protective, protein-based vaccine against serogroup B to be licensed, with the second (bivalent vaccine, MenB-FHbp) licensed the following year. 4CMenB is now registered in more than 50 countries, in the majority, for infants and all age groups. In the US, it is approved for individuals aged 10–25 years. Evidence from immunization programs in the last decade, comparing vaccinated and unvaccinated individuals and the same population before and after vaccination, confirms the effectiveness and positive impact of 4CMenB against serogroup B disease. This also demonstrates that 4CMenB can provide protection against invasive diseases caused by other meningococcal serogroups. Furthermore, N. meningitidis is closely related to the bacterium that causes gonorrhea, N. gonorrhoeae, and emerging real-world evidence suggests that 4CMenB provides additional moderate protection against gonococcal disease. The safety of 4CMenB when given to large numbers of infants, children, adolescents, and adults is consistent with the 4CMenB safety profile reported before licensure.For the future, it would be beneficial to address differences among national guidelines for the recommended administration of 4CMenB, particularly where there is supportive epidemiological evidence but no equitable access to vaccination. New assays for assessing the potential effectiveness of meningococcal serogroup B vaccines in clinical trials are also required because serogroup B strains circulating in the population are extremely diverse across different countries.
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  • 文章类型: Journal Article
    背景:大疱性表皮松解症(EB)是一种罕见的,无法治愈的遗传性皮肤病,表现为起泡和皮肤脆弱。并发症可以是局部的或普遍的,仅限于皮肤或有全身效应导致死亡。照顾患有这种痛苦状况的孩子会对父母和家庭的生活质量产生深远的影响。目前尚无关于在非洲资源有限的环境中照顾EB患儿的父母的生活经验的研究。
    方法:这项定性研究使用解释性现象学分析,目的是了解父母照顾EB儿童的生活经历。在2022年5月至2023年10月期间,对13名参与者进行了半结构化访谈。使用Guba的可信赖性框架来确保严格性。
    结果:确定了七个具有相关子主题的经验主题。主题是(1)努力理解EB,(2)心理体验,(3)带着责任生活,(4)感觉受到支持的障碍,(5)变化的关系动力学,(6)医疗保健专业人员的经验和(7)父母的需求。
    结论:照顾EB患儿的父母情绪激动,物理,社会心理和财务挑战。解决父母的需求和担忧将大大有助于减轻这种负担。具有文化背景意识的生物心理社会方法对于以家庭为中心的整体EB护理至关重要。贡献:这是非洲的第一项研究,重点是父母照顾EB患儿的生活经历。
    BACKGROUND:  Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with this painful condition can have a profound effect on the quality of life of parents and the family. There is currently no published research on the lived experience of parents caring for a child with EB in a resource-limited environment in Africa.
    METHODS:  This qualitative research used interpretative phenomenological analysis with the aim of understanding the lived experiences of parents caring for children with EB. Semi-structured interviews were conducted with 13 participants between May 2022 and October 2023. Guba\'s framework of trustworthiness was used to ensure rigour.
    RESULTS:  Seven experiential themes with associated sub-themes were identified. The themes were (1) grappling with understanding EB, (2) the psychological experience, (3) living with the responsibility, (4) barriers to feeling supported, (5) changing relational dynamics, (6) experience of healthcare professionals and (7) parental needs.
    CONCLUSIONS:  Parents caring for children with EB face emotional, physical, psychosocial and financial challenges. Addressing parents\' needs and concerns will go a long way in decreasing this burden. A biopsychosocial approach with an awareness of cultural context is essential for family-centred holistic EB care.Contribution: This is the first study in Africa that focussed on the lived experiences of parents caring for a child with EB.
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  • 文章类型: Journal Article
    背景:大疱性表皮松解症(EB)包括一组罕见类型的遗传性皮肤病,其特征是皮肤粘膜极度脆弱,导致起泡和/或侵蚀,即使创伤最小.通过伤口管理进行持续护理是受影响的家庭和个人日常生活中不可或缺的一部分。这项研究的目的是评估西班牙未成年人被诊断为EB的社会现实及其对家庭的影响。
    方法:采用定性方法,利用四个焦点小组,由24名父母(19名母亲和5名父亲)参与西班牙诊断为EB的未成年人。
    结果:对家庭核心的负面影响在四个优先分析领域很明显:社会关系,经济劳动,身体和心理情感,根据症状的严重程度观察到显着差异。
    结论:对家族核心的影响从出生开始就很明显,影响所有其他日常生活程序,使计划生育和组织复杂化。迫切需要提高社会卫生资源的可用性,并采用跨学科方法来满足其生物心理社会需求。
    被诊断患有大疱性表皮松解症(EB)的未成年人亲属的积极参与对社会健康专业人员来说是无价的,立法者和研究人员。团队成员在DEBRAEspaña(致力于提高EB患者及其家人的生活质量的国家患者协会)开展专业活动,积极参与所有学习阶段。
    BACKGROUND: Epidermolysis bullosa (EB) comprises a group of rare types of genodermatoses characterized by extreme mucocutaneous fragility, leading to blistering and/or erosions, even with minimal trauma. Continuous care through wound management is an integral part of daily life for the families and individuals affected. The aim of this study was to assess the social reality and impacts on families of having minor members diagnosed with EB in Spain.
    METHODS: A qualitative methodology was employed, utilizing four focus groups entailing participation by 24 parents (19 mothers and five fathers) of minors diagnosed with EB in Spain.
    RESULTS: Negative impacts on the family nucleus were evident in four priority areas of analysis: sociorelational, economic-labour, physical and psychoemotional, with significant differences observed based on the severity of the symptoms.
    CONCLUSIONS: Impacts on the family nucleus are noticeable from birth, influencing all other daily life routines and complicating family planning and organization. There is an imperative need to enhance the availability of sociohealth resources and to adopt an interdisciplinary approach to address their biopsychosocial needs.
    UNASSIGNED: The active participation of relatives of minors diagnosed with Epidermolysis Bullosa (EB) is invaluable to sociohealth professionals, legislators and researchers. A team member conducts their professional activities at DEBRA España (national patient association dedicated to enhancing the quality of life for individuals with EB and their families), actively engaging in all study phases.
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  • 文章类型: Journal Article
    越来越多的国际研究调查患者自杀对心理健康专业人员的影响。失去病人自杀的经历会有很大的意义,在某些情况下,对心理健康专业人员的长期(负面)影响。然而,对监狱工作人员或法医心理健康专业人员的影响的性质和程度并不清楚。这篇叙述性综述总结了定量和定性研究以及该领域的主要发现,专注于上述职业。使用PsychInfo和GoogleScholar进行了文献检索,从2000年开始。绝大多数研究结果与精神卫生专业人员有关。我们无法确定任何已发表的有关法医精神病工作人员回应的报告。监狱背景下的大多数确定的研究都是定性的。来自德语国家的研究在监狱和心理健康方面都特别稀缺。我们得出的结论是,对于客户/患者自杀对(德国)监狱和法医精神病工作人员亚组的影响,人们非常缺乏了解。显然,需要对影响的性质和程度进行更多的研究,以及有助于减轻自杀负面影响的具体组织和支持因素。
    There is a growing body of international research investigating the impact of patient suicide on mental health professionals. The experience of losing a patient to suicide can have a significant and, in some cases, long-lasting (negative) impact on mental health professionals. However, the nature and extent of the impact on prison staff or forensic mental health professionals in particular is less clear. This narrative review summarises both quantitative and qualitative studies and key findings in this area, focusing on the above professions. A literature search was conducted using PsychInfo and Google Scholar, covering the period from 2000 onwards. The vast majority of findings relate to mental health professionals in general. We were unable to identify any published reports on the responses of forensic psychiatric staff. The majority of identified studies in the prison context are qualitative. Studies from German-speaking countries are particularly scarce in both the prison and mental health contexts. We conclude that there is a profound lack of knowledge about the impact of client/patient suicide on the subgroups of (German) prison and forensic psychiatric staff. Clearly, more research is needed on both the nature and extent of the impact, as well as on the specific organisational and supportive factors that help to mitigate the negative effects of suicide.
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