Professional perspectives

  • 文章类型: Journal Article
    为了研究人类早期发育,同时避免与人类胚胎研究相关的负担,科学家们正在将他们的努力转向所谓的人类胚胎样结构(hELS)。hELS是从人类多能干细胞簇产生的,并且似乎能够以越来越高的准确性模仿早期人类发育。尽管如此,HELS研究发现自己处于历史上有争议的领域的交叉点,人们期望它可能会受到同样敏感的影响,这促使许多司法管辖区进行积极的法律改革,包括荷兰。然而,关于公众对HELS研究的看法的研究仍然很少。为了帮助指导政策制定者并填补文献中的这一空白,我们进行了一项探索性的定性研究,旨在绘制荷兰关于HELS的创建和研究使用的观点范围。这篇文章报道了我们发现的一部分,即与对HELS及其监管的研究信心(的程度和要求)有关的那些。尽管人们对新兴生物技术的信心存在普遍差异,我们还在对HELS研究有(更多)信心的要求方面达成了广泛共识。我们通过反思这些发现在其局限性的背景下进行解释时,如何与研究人员和(荷兰)决策者相关。
    In order to study early human development while avoiding the burdens associated with human embryo research, scientists are redirecting their efforts towards so-called human embryo-like structures (hELS). hELS are created from clusters of human pluripotent stem cells and seem capable of mimicking early human development with increasing accuracy. Notwithstanding, hELS research finds itself at the intersection of historically controversial fields, and the expectation that it might be received as similarly sensitive is prompting proactive law reform in many jurisdictions, including the Netherlands. However, studies on the public perception of hELS research remain scarce. To help guide policymakers and fill this gap in the literature, we conducted an explorative qualitative study aimed at mapping the range of perspectives in the Netherlands on the creation and research use of hELS. This article reports on a subset of our findings, namely those pertaining to (the degrees of and requirements for) confidence in research with hELS and its regulation. Despite commonly found disparities in confidence on emerging biotechnologies, we also found wide consensus regarding the requirements for having (more) confidence in hELS research. We conclude by reflecting on how these findings could be relevant to researchers and (Dutch) policymakers when interpreted within the context of their limitations.
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  • 文章类型: Journal Article
    背景:COVID-19大流行增加了儿童虐待的可能性,并使本已困难的儿童及其家庭的处境更加恶化。这增加了儿童保护系统在应对虐待儿童和确保儿童权利方面的作用的重要性,包括他们享有没有暴力的安全生活的权利。不幸的是,越来越多的证据表明,在大流行期间,虐待儿童的比率有所增加。
    目的:当前的研究旨在找出COVID-19大流行期间各国在儿童保护对策方面的差距,并发现我们如何在未来应对危机的同时保护儿童权利,包括保护他们免受虐待的权利.
    方法:通过Zoom进行了五个焦点小组,共有47名专业人员与来自不同国家的儿童一起工作,并使用主题方法进行了分析。
    结果:确定了三个主要主题:1)政策差距,2)实践中的差距,和3)专业人员改善政策和实践的信息。
    结论:这项研究强调了儿童保护政策和实践中的遗漏,强调政策中对儿童需求和声音的持续忽视,大流行期间全世界的做法和指导方针。还讨论了专业人士对政策和实践的建议。
    BACKGROUND: The COVID-19 pandemic increased the likelihood of child maltreatment and made already difficult circumstances for children and their families much worse. This increased the significance of the child protection system\'s role in responding to child maltreatment and ensuring children\'s rights, including their right to a safe life without violence. Unfortunately, accumulating evidence has indicated that the rates of child maltreatment increased during the pandemic.
    OBJECTIVE: The current study sought to identify the gaps within child protection responses in various countries during the COVID-19 pandemic and to discover how we can respond to crises in the future while preserving children\'s rights, including their right to protection from maltreatment.
    METHODS: Five focus groups with a total of 47 professionals working with children from various countries were conducted via Zoom and analyzed using a thematic approach.
    RESULTS: Three main themes were identified: 1) gaps in policies, 2) gaps in practice, and 3) professionals\' messages to improve policy and practice.
    CONCLUSIONS: This study emphasizes what was missed in child protection policy and practice, highlighting the continuous neglect of children\'s needs and voices within policies, practices and guidelines worldwide during the pandemic. Professionals\' recommendations for policy and practice are also discussed.
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  • 文章类型: English Abstract
    Pathology in the GDR was firmly rooted in the tradition of German pathology. Further training imparted sound morphological knowledge. Until the late 1970s, it was primarily autopsy pathology. Scientific relations with the West-with centers where the discipline was developing dynamically-were severely hampered for political reasons; normal conference attendance was reserved for a few selected cadres. The inefficiency of the planned economy led to increasing material bottlenecks. GDR pathology had become a relic by the end of the GDR regime.
    UNASSIGNED: Die Pathologie in der DDR stand fest in der Tradition der deutschen Pathologie. Die Weiterbildung vermittelte fundierte morphologische Kenntnisse. Bis in die späten 1970er-Jahre war sie in erster Linie Obuktionspathologie. Wissenschaftliche Beziehungen mit dem Westen – vor allem mit Zentren, wo sich das Fach dynamisch entwickelte – waren aus politischen Gründen stark behindert; normale Tagungsbesuche waren nur wenigfen ausgewählten Kadern möglich. Die ineffiziente Planwirtschaft führte zu zunehmenden materiellen Engpässen. Am Ende des DDR-Regimes wurde die Pathologie zum Relikt.
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  • 文章类型: Journal Article
    自2022年10月17日以来,根据食品和药物管理局的裁决,美国消费者可以使用非处方助听器。然而,听力保健专业人员(HHP)对他们的接待参差不齐,许多HHP都表达了担忧。这项研究的目的是研究HHP对非处方药(OTC)助听器的担忧。研究采用回顾性调查设计。HHP的调查数据(n=730)来自听力跟踪器。使用QuestionScout平台管理了22个项目的结构化问卷。描述性分析检查了报告的关注领域,Fisher精确检验检查了人口统计学与反应之间的关系。使用围绕medoids(PAM)进行分区的聚类分析,以根据反应确定参与者的亚组。近一半参与的HHP报告说,他们将支持在其他地方购买OTC助听器的患者,而四分之一的人报告说他们将在他们的诊所或网站上出售OTC助听器。在17个项目中的14个项目中,HHP在“关注”声明中表示了超过70%的同意。关于安全的问题,咨询,和听力学护理是HHP对OTC助听器的主要关注。一些人口统计学(即,职业,主要位置)与对某些陈述的回答相关。根据对关注陈述的答复确定了两组。第一组“场外交易厌恶”中的HHP(51%)同意所有17项关注声明,而第二组“场外交易忧虑”(49%)的一些项目被评为不同意(即,消费者将放弃放大),既不同意也不反对(即,不提供良好的价值,保修和退货期会更糟),其余项目被评为同意。OTC助听器的推出是为了提高负担能力,可访问性,和助听器的吸收,是目前正在迅速兴起的一类听力设备。总的来说,目前的研究结果表明,HHP对OTC助听器有严重的担忧。本研究中引用的HHP问题为利益相关者提供了有用的反馈(例如,HHP专业机构,FDA,工业,和保险付款人)参与改善OTC助听器的实施。
    Over-the-counter hearing aids have been available to consumers in the US since 17 October 2022 following a ruling by the Food and Drug Administration. However, their reception by hearing healthcare professionals (HHP) has been mixed, and concerns have been expressed by many HHPs. The aim of this study was to examine the concerns that HHPs have towards over-the-counter (OTC) hearing aids. The study used a retrospective survey design. The survey data of HHPs (n = 730) was obtained from Hearing Tracker. A 22-item structured questionnaire was administered using a Question Scout platform. Descriptive analyses examined reported areas of concern and a Fisher\'s exact test examined the relationship between demographics and responses. A cluster analysis with partitioning around medoids (PAM) was used to identify a sub-group of participants based on responses. Nearly half of HHPs who participated reported that they will support patients with OTC hearing aids purchased elsewhere, whereas a quarter reported that they will sell OTC hearing aids in their clinic or website. HHPs expressed over 70% agreement in \'concern\' statements in 14 of the 17 items. Issues about safety, counseling, and audiological care were the key concerns expressed by HHPs about OTC hearing aids. Some demographics (i.e., profession, primary position) were associated with responses to some statements. Two groups were identified based on the responses to concern statements. The HHPs in the first cluster \'OTC averse\' (51%) agreed on all the 17 concern statements, whereas the second cluster \'OTC apprehensive\' (49%) had some items rated as disagree (i.e., consumers will give up on amplification) and neither agree nor disagree (i.e., do not provide good value, warranties and return periods will be worse), and remaining items were rated as agree. OTC hearing aids were initiated to improve affordability, accessibility, and hearing aid uptake and are currently a rapidly emerging category of hearing devices. Overall, the results of the current study indicate that HHPs have serious concerns about OTC hearing aids. HHP concerns cited in this study provide useful feedback to stakeholders (e.g., HHP professional agencies, FDA, industry, and insurance payers) involved in improving OTC hearing aid implementation.
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  • 文章类型: Journal Article
    OBJECTIVE: To examine interprofessional healthcare professionals\' perceptions of triggers and root causes of moral distress.
    METHODS: Qualitative description of open-text comments written on the Moral Distress Scale-Revised survey.
    METHODS: A subset of interprofessional providers from a parent study provided open-text comments that originated from four areas of the Moral Distress Scale-Revised, including the margins of the 21-item questionnaire, the designated open-text section, shared perceptions of team communication and dynamics affecting moral distress, and the section addressing an intent to leave a clinical position because of moral distress. Open-text comments were captured, coded, and divided into meaning units and themes using systematic text condensation.
    METHODS: Twenty-eight of the 223 parent study participants completing the Moral Distress Scale-Revised shared comments on situations contributing to moral distress.
    RESULTS: All 28 participants working in the four medical center intensive care units reported feelings of moral distress. Feelings of moral distress were associated with professional anguish over patient care decisions, team, and system-level factors. Professional-level contributors reflected clinician concerns of continuing life support measures perceived not in the patient\'s best interest. Team and unit-level factors were related to poor communication, bullying, and a lack of collegial collaboration. System-level factors included clinicians feeling unsupported by senior administration and institutional culpability as a result of healthcare processes and system constraints impeding reliable patient care delivery.
    METHODS: Approval was obtained from the Institutional Review Board (IRB) of the University of Texas Health IRB and the organization in which the study was conducted.
    CONCLUSIONS: Moral distress was associated with feelings of anguish, professional intimidation, and organizational factors that impacted the delivery of ethically based patient care. Participants expressed a sense of awareness that they may experience ethical dilemmas as a consequence of the changing reality of providing healthcare within complex healthcare systems. Strategies to combat moral distress should target team and system interventions designed to improve interprofessional collaboration and support professional ethical values and moral commitments of all healthcare providers.
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  • 文章类型: Journal Article
    目的:对辅助内分泌治疗(AET)的依从性欠佳,并探索了一系列变量,以了解患者服药的经历和动机。然而,肿瘤学家对依从性的看法知之甚少。这项研究的目的是探讨肿瘤学家对依从性/非依从性的看法及其策略,以确保患者继续接受治疗,以告知潜在的可修改干预措施的发展。
    方法:定性研究使用深入,在阿根廷对16名肿瘤学家进行了半结构化访谈.分层目的性抽样用于从3个健康子系统(私人,社会保障,和公共)。使用框架方法分析数据。
    结果:肿瘤学家认为,与化疗相比,患者的依从性总体较高,并且与AET的良好耐受性相关。提供的信息,患者感到放心(害怕复发)。不遵守被认为不是一个主要问题,这与罕见的严重副作用有关,年轻的年龄,拒绝治疗,失去保险计划,缺乏教育,和社会环境。患者对令人讨厌的副作用的抱怨并未被确定为停药的主要原因。公共和私营部门的患者,然而,被认为对副作用有不同的态度。管理策略包括医学变革,转介支持服务,和肿瘤学家的支持关系。
    结论:肿瘤学家对AET依从性/非依从性的观点与文献中基于患者报告因素的观点显示出相似性和显著差异。总体依从性被认为是高的,但在公共部门患者中,非故意不依从的可能性似乎很重要.向患者提供的信息应针对严重和令人不快的副作用提供明确的解释。应考虑采取干预措施来提高肿瘤学家和负责生存护理的专家的沟通技巧,以增强患者的自我效能和有效的服药。需要关于依从性的可靠数据。
    OBJECTIVE: Adherence to adjuvant endocrine therapy (AET) is suboptimal, and a range of variables have been explored for understanding patients\' experiences and motivations for medication-taking. However, oncologists\' views on adherence are poorly understood. The aim of this study was to explore oncologists\' perspectives on adherence/non-adherence and their strategies to ensure patients continue with treatments to inform the development of potential modifiable interventions.
    METHODS: A qualitative study using in-depth, semi-structured interviews with 16 oncologists was conducted in Argentina. A stratified purposive sampling was used to recruit female and male participants from 3 health subsystems (private, social security, and public). Data were analyzed using the Framework approach.
    RESULTS: Oncologists believed patients\' adherence was overall high and associated it with good tolerance of AET in comparison to chemotherapy, information provided, and patients feeling reassured (fear of recurrence). Non-adherence was not perceived as a major source of concern, and it was related to rare cases of severe side effects, young age, refusing treatment, losing the insurance plan, lack of education, and social circumstances. Patients\' complaints of bothersome side effects were not identified as a main reason to discontinuation. Public and private sector patients, however, were perceived as having different attitudes toward side effects. Management strategies included medicine change, referral to support services, and a supportive relationship with the oncologist.
    CONCLUSIONS: Oncologists\' perspectives on adherence/non-adherence to AET show similarities and significant differences with those in the literature based on patient-reported factors. Overall adherence was considered high, but the likelihood of unintentional non-adherence seems important in public sector patients. Information to patients should provide clear explanations on both severe and unpleasant side effects. Interventions to improve communication skills in oncologists and specialists responsible for survivorship care should be considered to strengthen patients\' self-efficacy and effective medication-taking. Reliable data on adherence are needed.
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  • 文章类型: Journal Article
    A fundamental requirement of a supportive language development for young children who need aided communication is that an aided communication system is made available and its use is supported. There is limited information about the age at which children are typically provided with a communication aid or about how aided communication is used in everyday situations. Using questionnaire-based interview data, this study investigated (a) the pattern of provision of communication aids to 84 children and adolescents, (b) parents\' and professionals\' evaluation of the quality of communication across contexts, and (c) availability and use of aided communication in these contexts. The age at which the participants received their first aided system varied considerably across the group; however, most were considerably older than the age at which children with typical development usually begin to speak. Parents and professionals rated most everyday situations as good communication situations but reported that the participants did not have their main form of expressive language available in many of these situations, or did not use it much. Parents rated their child\'s education in relation to aided language positively, but many professionals indicated that they had limited knowledge about the participant\'s use of aided communication outside of the school environment, or about the parents\' attitudes. The study gives insights into the language learning situation of children and adolescents who develop aided communication.
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  • 文章类型: Journal Article
    To synthesize experiences of the patient complaints process for patients and health-care professionals to identify facilitators and barriers in the successful implementation of patient complaints processes. This will assist the development of cultural change programmes, enabling complaints managers to incorporate stakeholder perspectives into future care.
    Systematic literature search and meta-ethnography, comprising reciprocal syntheses of \"patient\" and \"professional\" qualitative studies, combined to form a \"line-of-argument\" embodying both perspectives.
    MEDLINE, CINAHL and PsycINFO (database inception to April 2015) were searched to identify international literature in primary and secondary health-care settings, involving qualitative data collection and analysis. Further studies were identified from hand-searching relevant journals, contacting authors, article reference lists and Google Scholar.
    A total of 13 papers, reporting 9 studies from the United Kingdom, Sweden, Australia and New Zealand, were included in the synthesis. Facilitators and barriers to the successful implementation of patient complaints processes were identified across the perspectives of both patients and health-care professionals. Patients sought to individualize the complaints process by targeting specific professionals who engaged in practices that undermined the identity of patients. In contrast, professionals obscured their own individualism through maintaining a collective identity and withholding personal judgement in relation to patient complaints.
    Complainants recognized health-care professionals as bearers of individual accountability for unsatisfactory care, in opposition to the stance of collective responsibility endorsed by professionals. Implementation of patient complaints processes must reconcile the need for individualized resolution, whilst striving to improve the future provision of health care through a collaborative approach between patients and professionals.
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  • 文章类型: Journal Article
    Healthcare professionals (HCPs) regularly face requests from parents for predictive genetic testing of children for adult-onset conditions. Little is known about how HCPs handle these test requests, given that guidelines recommend such testing is deferred to adulthood unless there is medical benefit to testing before that time. Our study explored the process of decision-making between HCPs and parents. Semi-structured interviews were conducted with 34 HCPs in 8 regional genetic services across the UK, and data were thematically analysed. We found that instead of saying \'yes\' or \'no\' to such requests, many HCPs framed the consultation as an opportunity to negotiate the optimal time of testing. This, they argued, facilitates parents\' considered decision-making, since parents\' eventual decisions after requesting a test was often to defer testing their child. In cases where parents\' requests remained a sustained wish, most HCPs said they would agree to test, concluding that not testing would not serve the child\'s wider best interest. As a strategy for determining the child\'s best interest and for facilitating shared decision-making, we recommend that HCPs re-frame requests for testing from parents as a discussion about the optimal time of testing for adult-onset disease.
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  • 文章类型: Journal Article
    The colonisation of Australia has been associated with traumatic consequences for Aboriginal health and wellbeing, including the breakdown of the traditional family unit and negative consequences for the mother/child relationship. Early-intervention programs have been developed to assist families to overcome disadvantage and strengthen mother/child attachment. However, there is no research examining Aboriginal women\'s subjective experiences and constructions of motherhood in the context of such programs, and no research on the perceived impact of such programs, from the perspective of Aboriginal mothers and healthcare workers (HCWs), with previous research focusing on child outcomes.
    Researchers conducted participant observation of an early intervention program for Aboriginal mothers and young children over a 6 month period, one-to-one interviews and a focus group with 10 mothers, and interviews with nine HCWs, in order to examine their perspectives on motherhood and the intervention program.
    Thematic analysis identified 2 major themes under which subthemes were clustered. Constructions of motherhood: \'The resilient mother: Coping with life trauma and social stress\' and \'The good mother: Transformation of self through motherhood\'; Perspectives on the intervention: \'\"Mothers come to life\": Transformation through therapy\'; and \'\"I know I\'m a good mum\": The need for connections, skills and time for self\'.
    The mothers constructed themselves as being resilient \'good mothers\', whilst also acknowledging their own traumatic life experiences, predominantly valuing the peer support and time-out aspects of the program. HCWs positioned the mothers as \'traumatised\', yet also strong, and expressed the view that in order to improve mother/child attachment a therapeutic transformation is required. These results suggest that early interventions for Aboriginal mothers should acknowledge and strengthen constructions of the good and resilient mother. The differing perspectives of mothers and HCWs on the role and impact of the early intervention program reinforces the need for Aboriginal mothers to be involved in the design and implementation of services aimed at assisting their families.
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