Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis
Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis
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DOI：
10.1016/j.socscimed.2005.03.039
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发表时间：
2005-10-01
影响因子：
5.4
通讯作者：
Lowton, K
中科院分区：
文献类型：
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作者：
Lowton, K
在理解临床研究参与动机的背景下，许多作者考虑诸如知情同意以及患者如何看待研究方法和过程等问题，我欠呃，许多调查只关注一种研究方法，最常见的是随机对照试验，了解一个特定患者群体的慢性病成员对所有研究参与请求的反应是罕见的。囊性纤维化 (CF) 是一种遗传性疾病，受影响的人多年来习惯于接受各种治疗并前往专科护理中心就诊，并且通常了解自己的病情。代表了调查工作人员如何接受或拒绝参与临床研究的请求的所有理想案例。利用 Bloor 的风险行为和风险降低相关框架系统，可以了解 CF 中心患者参与或不参与临床研究的动机。该框架考虑了两组概念上的对立：习惯和计算、约束和意志。这些对立代表了一系列风险行为的连续体，而不是绝对的区别。参与的决定主要受到患者请求时的健康状况、试验的性质以及患者所处的社会背景的影响。了解为什么慢性病患者拒绝声音请求但接受其他人的请求可能有助于研究人员设计方案，将这些因素考虑在内并达到所需的参与者数量，同时保护处于弱势地位的人。 (c) 2005 Elsevier Ltd. 保留所有权利。
In the context of understanding motivations for clinical research participation, many authors consider issues such as informed consent and how patients perceive the research method and process, I I owe er, many investigations focus only on one method of research, most commonly the randomised controlled trial, Understanding him chronically ill members of one specific patient group respond to all requests for research participation are rare. Cystic fibrosis (CF), a genetic condition whereby those affected are used to taking a wide array of treatments and attending it specialist care centre over many years, and are generally knowledgeable about their condition. represents all ideal case for investigating how staff requests for clinical research participation are accepted or declined. Using Bloor's systems of relevance framework for risk behaviour and risk reduction, specialist CF centre patients' motivations for participation or non-participation in clinical research can be understood. The framework takes into account two sets of conceptual oppositions: habituation and calculation, constraint and volition, These oppositions represent a range along a continuum of risk behaviour rather than being absolute distinctions, Decisions to participate are influenced mainly by the patient's state of health at the time of request, the nature of the trial and the social context within which Sufferers are placed. Understanding why chronically ill patients refuse sonic requests and yet accept others may assist researchers in designing protocols that take these factors into account and achieve the desired numbers of participants whilst protecting those in vulnerable positions. (c) 2005 Elsevier Ltd. All rights reserved.