家庭癌症告知过程及类型分析

将癌症告知看作一个家庭过程,以患者-家属为分析单位,阐述确诊及病程信息如何在家庭中流动,以及告知过程中患者和家属的角色演变。研究者对12位肺癌患者、7位家庭照护者和2位医生进行半结构访谈,并对访谈数据进行主题分析。家庭癌症告知是一个关乎患癌事实如何在家庭内流动的过程。围绕确诊、治疗和临终安排三个阶段,详细阐述了病患和家人的多种角色的演变,并基于此构建了两种家庭告知的理想类型：病患决策型和家属代理型。患者以往家庭角色、家庭沟通系统和疾病具身性体验是家庭癌症告知过程的重要影响因素。

     

患者和家属参与患者安全的概念演变及临床意义

运用Rodgers演化概念分析法对患者和家属参与患者安全概念的演化、替代术语和相关术语、前因变量、结果、概念属性、定义、典型案例进行分析。概念属性包含过程、行为及环境3个领域,4个重要特征分别为个性化、获取、投入及治疗联盟,其前因变量为患者的疾病、健康信息或护理协调的混乱、新政策号召的尝试。结果包括保障患者安全、减少医疗费用和确定最佳做法。澄清患者和家属参与患者安全的概念有助于提高医护人员对其的重视与了解,为临床的实践和研究提供参考和理论依据。

     

安宁疗护患者生活质量评估工具的研究进展

准确评估临终患者的生活质量能更好地实施和评价安宁疗护。国内外相关评估工具各有特点,国外相关研究较为成熟,已有较完善且应用广泛的评估工具;而我国此方面的研究起步较晚,相关工具数量少且应用局限。介绍了国内外安宁疗护患者生活质量评估工具的发展过程、适用对象、测量内容、信效度以及使用方法,并对各工具的基本情况和应用现状进行比较分析,以期为临床研究选用合适的评估工具、国内学者汉化及开发相关评估工具提供参考。

     

“为癌症患者心理赋能”的临床干预路径

“为患者心理赋能”是近年来医疗健康领域出现的一种新的积极医疗照护理念,其关注点是个体的能力而非缺陷,它强调医疗实践应该为改善健康和生活质量建立患者激励结构。首先梳理了赋能的概念发展与心理结构,随后引证多个实证研究总结出为癌症患者心理赋能的四条临床干预路径,指出医患共同决策、同伴支持、赋能教育以及认知行为压力管理的赋能价值。最后结合已有成果和研究中发现的问题,提出癌症心理赋能干预发展建议,有利于进一步开展临床研究和实践探索。

     

患者决策能力与风险相关标准

患者决策能力对于患者享有临床知情同意权具有重要意义。风险相关标准主张决策所需的能力水平应该根据决策的结果来调整,单一的决策能力标准是不够的。决策结果带来的风险越大,能力水平要求越高,反之则可以要求较低的能力水平。该主张的伦理本质是不合理家长主义,并且,它意味着对同一决策任务,个体可能只有同意的能力而没有拒绝的能力,因而在经验上也站不住脚。患者决策能力标准仅应根据决策本身的复杂性和难易程度视该决策特性来决定,而独立于患者实际决策结果。     

A Survey of Patients’ Experiences with the Cancer Genetic Counseling Process: Recommendations for Cancer Genetics Programs

In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.     

Developing and Improving After-School Programs to Enhance Youth’s Personal Growth and Adjustment: A Special Issue of AJCP

Participating in after-school programs (ASPs) has become a common experience for children. This special issue provides a perspective on the current status of research on ASPs. This introductory article overviews the historical and current context of ASPs and then describes a developmental ecological model to guide research in this area. The model offers a framework from which to organize and synthesize the research presented in this issue. Key principles include a holistic view of development that recognizes interrelations between multiple domains of youth adjustment, attention to multiple, relevant factors within and outside of youth that affect development, examining the dynamic interplay between persons, program features, and other contexts over time, and understanding the active role of youth in affecting their own development. These principles are examined in relation to five main areas: youth characteristics, social ecologies, program features, participation, and short- and long-term outcomes. Recommendations for future research are discussed.     

Public Storylines in the British Transition from Rail to Road Transport (1896–2000): Discursive Struggles in the Multi-Level Perspective

ABSTRACT

An analysis of the transition from railways to highways as the dominant British transport system during the twentieth century shows that public storylines about competing niche and regime technologies can have a powerful influence on socio-technical transitions. These storylines are developed by supporters and opponents of the competing technologies, with each group attempting to frame their favoured technology positively. The public salience of these storylines can be evaluated by assessing how highly they score on four elements of frame resonance: empirical fit, experiential commensurability, actor credibility, and macro-cultural resonance. These storylines can be seen at play across the entirety of the transition to a road-based transport system, from the very early history of the automobile through to the turn of the millennium, when public opposition to road transport was becoming increasingly pronounced. This case study uniquely traces discursive conflict over the entire course of a multi-decade transition. While existing literature in the multi-level perspective typically emphasises the disadvantages faced by niche-innovations, this case study shows that powerful storylines, enabled by the right cultural repertoires and possibly negative storylines about existing socio-technical systems, can create powerful political support for a new technology, giving it an advantage against more established incumbents.