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首页> 外文期刊>Health expectations: an international journal of public participation in health care and health policy >“Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy
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“Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy

机译：“最终，妈妈给我打电话”：通过关系自主权的视角查看卵巢癌患者的临床试验决策

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Objective This study employs the concept of relational autonomy to understand how relational encounters with family members ( FM s) and care providers may shape decisions around ovarian cancer patients’ clinical trial ( CT ) participation. The study also offers unique insights into how FM s view patients’ decision making. Methods In‐depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FM s. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy ( RA ). Results Patients’ relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors’ recommendations and perceived enthusiasm were described as influential in CT decisions. Both patients with ovarian cancer and their FM s maintained that patients have the “final say,” indicating an individualistic autonomy. However, maintaining the “final say” in the decision‐making process is constitutive of patients’ relationships, emphasizing a relational approach to autonomy. FM s support patients’ autonomy and they do so particularly when they believe the patient is capable of making the right choices. Conclusions Although ethical principles underlying informed consent for CT participation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding of CT decision making.
机译：目的本研究采用关系自主性的概念，以了解与家庭成员（FM）和护理提供者的关系性遭遇如何影响围绕卵巢癌患者临床试验（CT）参与的决策。该研究还提供了关于FM如何看待患者决策的独特见解。方法对33例接受了CT和39 FM的卵巢癌患者进行了深入访谈。使用主题方法对数据进行归纳分析，并通过从关系自治理论（RA）衍生的构想推导信息。结果患者的关系，经历和社会地位是决定其决策的重要资源。患者并没有对所有关系给予同等的重视，并在决策周围建立了界限。医生的建议和感知的热情被认为对CT决策有影响。卵巢癌患者及其FM均坚持认为患者具有“最终决定权”，表明具有个人自主权。但是，在决策过程中保持“最终决定权”是患者关系的组成部分，强调了采用自治的关系方法。 FM支持患者的自主权，当他们相信患者能够做出正确选择时，他们会这样做。结论尽管参与CT知情同意的伦理原则强调个人自主权，但为了更全面地理解CT决策，仍应更加注意关系自主。

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