Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

In the endeavour of biobank research there is dispute concerning what type of consent and which form of donor–biobank relationship meet high ethical standards. Up until now, a ‘broad consent'' model has been used in many present-day biobank projects. However it has been, by some scholars, deemed as a pragmatic, and not an acceptable ethical solution. Calls for change have been made on the basis of avoidance of paternalism, intentions to fulfil the principle of autonomy, wish for increased user participation, a questioning of the role of experts and ideas advocating reduction of top–down governance. Recently, an approach termed ‘dynamic consent'' has been proposed to meet such challenges. Dynamic consent uses modern communication strategies to inform, involve, offer choices and last but not the least obtain consent for every research projects based on biobank resources. At first glance dynamic consent seems appealing, and we have identified six claims of superiority of this model; claims pertaining to autonomy, information, increased engagement, control, social robustness and reciprocity. However, after closer examination, there seems to be several weaknesses with a dynamic consent approach; among others the risk of inviting people into the therapeutic misconception as well as individualizing the ethical review of research projects. When comparing the two models, broad consent still holds and can be deemed a good ethical solution for longitudinal biobank research. Nevertheless, there is potential for improvement in the broad model, and criticism can be met by adapting some of the modern communication strategies proposed in the dynamic consent approach.     

A qualitative participatory study to identify experiences of coronary heart disease patients to support the development of online self-management services

ObjectiveWeb-based self-management services remain underutilized in current practice. Our aim was to gain insight into disease and self-management experiences of patients in early and progressive stages of coronary heart disease (CHD), to understand moderating effects of daily life experiences on the utilization of web-based self-management services and preconditions for use.MethodsWe applied generative research techniques, which stem from the field of product design and are characterized by the use of creative processes. Three groups of patients with CHD received a sensitizing package to document and reflect on their health, and were subsequently either interviewed or participated in a focus group session.ResultsIn total, 23 patients participated in this study. Emerging themes were (1) fear for recurrent events, (2) experiences with professional care, (3) the perceived inability to prevent disease progression, (4) the desire to go on living without thinking about the disease every day, (5) the social environment as a barrier to or facilitator for self-management, and (6) the need for information tailored to personal preferences.ConclusionHow patients experience their disease varies between stable and post-acute stages, as well as between early and progressive stages of CHD. Patients in post-acute stages of the disease seem to be most amenable to support, while patients in stable stages want to live their life without being reminded of their disease. In the context of self-management, web-based services should be adapted to the variation in needs that occur in the different stages of CHD and new strategies to fit such services to these needs should be developed. Furthermore, they should be tailored to patients’ individual health situation and preferences, support patient empowerment, and manage expectations regarding the progression of their disease.     

Patients’ Reported Reasons for Non-Use of an Internet-Based Patient-Provider Communication Service: Qualitative Interview Study

Background

The adoption of Internet-based patient–provider communication services (IPPC) in health care has been slow. Patients want electronic communication, and the quality of health care can be improved by offering such IPPCs. However, the rate of enrollment in such services remains low, and the reasons for this are unclear. Knowledge about the barriers to use is valuable during implementation of IPPCs in the health care services, and it can help timing, targeting, and tailoring IPPCs to different groups of patients.

Objective

The goal of our study was to investigate patients’ views of an IPPC that they could use from home to pose questions to nurses and physicians at their treatment facility, and their reported reasons for non-use of the service.

Methods

This qualitative study was based on individual interviews with 22 patients who signed up for, but did not use, the IPPC.

Results

Patients appreciated the availability and the possibility of using the IPPC as needed, even if they did not use it. Their reported reasons for not using the IPPC fell into three main categories: (1) they felt that they did not need the IPPC and had sufficient access to information elsewhere, (2) they preferred other types of communication such as telephone or face-to-face contact, or (3) they were hindered by IPPC attributes such as login problems.

Conclusions

Patients were satisfied with having the opportunity to send messages to health care providers through an IPPC, even if they did not use the service. IPPCs should be offered to the patients at an appropriate time in the illness trajectory, both when they need the service and when they are receptive to information about the service. A live demonstration of the IPPC at the point of enrollment might have increased its use.

Trial Registration

ClinicalTrials.gov {"type":"clinical-trial","attrs":{"text":"NCT00971139","term_id":"NCT00971139"}}NCT00971139; http://clinicaltrial.gov/ct2/show/{"type":"clinical-trial","attrs":{"text":"NCT00971139","term_id":"NCT00971139"}}NCT00971139 (Archived by WebCite at http://www.webcitation.org/6KlOiYJrW).     

刮痧痧象研究进展

刮痧现有研究多集中在疗效观察,并初步尝试作用机制探索,但对痧象研究稍显不足。目前痧象研究主要包括皮肤外观、皮肤血流灌注量以及皮肤温度等方面,这些研究为今后刮痧技术的标准化、规范化、可视化研究奠定了基础,提供了借鉴。但是这些研究尚处于初级阶段,还有待于进一步深入研究。     

癌症患者照顾者心理体验质性研究的Meta整合

目的系统总结癌症患者照顾者的心理体验,全面了解其内心需求,为更好地开展临床医疗工作提供依据。方法计算机检索CNKI、万方数据库、维普网、EMBASE、PubMed、BMJ Journals、CINAHL、Cochrane Library、ProQuest等数据库,搜集有关癌症患者照顾者心理体验的质性研究,检索时限为建库至2020年5月。采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准评价文献质量,采用汇集性整合的方法进行结果整合。结果共纳入10篇研究,提炼出22个研究结果,将相似的研究结果归纳形成9个新类别,得出3个整合结果,即照顾者生理、心理备受煎熬,负性情绪为主,夹杂正性情绪;经过自我调适,照顾者角色获得成长;对信息和支持的渴求。结论医护人员应关注癌症患者照顾者的心理变化和信息需要,提供必要的支持和帮助,促进照顾者适应角色,提高照顾者的生活质量。     

青年癫痫患者经历病耻感真实体验的质性研究

目的了解青年患者发生癫痫后经历病耻感的真实体验,为临床护理人员对其进行针对性护理干预提供理论依据。方法采用目的性抽样法,于2019年9月—2020年4月选取上海某三级甲等医院神经科的青年癫痫患者12例为研究对象。采用描述性质性研究设计,通过半结构式访谈提纲对患者进行深度访谈。采用主题分析法分析资料。结果提炼出3个主题,即病耻感体验(羞耻感、被歧视感、绝望感)、病耻感危害(社交恐惧、自杀倾向、婚姻关系较差、工作消极)及病耻感应对。结论青年癫痫患者存在较强烈的病耻感且病耻感对他们造成了较大的危害,但他们却无法应对病耻感,因此需要临床护理人员充分关注青年癫痫患者的病耻感,及时为其提供护理干预。     

PICC带管期间皮炎患者的质性研究

目的 探讨PICC带管期间皮炎患者受到皮炎的影响和改变,为临床个性化护理提供参考依据,以期提高护理质量。方法 采用目的抽样法,选取11例发生皮炎的PICC带管患者进行半结构化式访谈,资料通过Colaizzi法分析法得出主题。结果 通过对访谈资料的归类与剖析可归纳为4个主题:皮炎对患者日常生活的影响;焦虑与担忧;对PICC专科护士的认可增加;患者迫切需要便捷的医疗资源。结论 医护人员应发挥对政策信息掌握及自身专业技术优势,加强对患者的健康指导,预防皮炎发生,对皮炎患者及时评估,尽早进行综合性的护理干预和心理疏导,提高患者生活质量。     

胃癌病人自杀干预研究进展

对胃癌病人自杀的高危因素及其干预措施的研究进展进行综述,以期引起医护人员对胃癌病人心理健康的关注,尤其是对有自杀倾向的病人,采取针对性的干预防范措施以减少自杀等不良事件的发生。建议护理科研人员能尽早制定适用于胃癌等恶性肿瘤病人的自杀评估量表;同时建议护理科研人员对胃癌病人的自杀情况进行更深入的研究,从而为自杀干预提供更多参考资料。