对拒绝为基于基因组研究的生物库做出贡献的心脏护理患者的解释进行主题分析。
Thematic analysis of cardiac care patients' explanations for declining contribution to a genomic research-based biobank.
机构信息
College of Nursing, Medical University of South Carolina, Charleston, SC 29425, USA.
出版信息
Am J Crit Care. 2013 Jul;22(4):320-7. doi: 10.4037/ajcc2013838.
BACKGROUND
Health care delivery systems increasingly ask patients to contribute biological samples for future genomic-based health research during critical care admissions, as the result of genome-based research requirements of unprecedented large sample sizes. Few reports describe patients' perceptions and responses to actual biobanking approaches in clinical settings. A qualitative study was conducted to explore 568 cardiac care patients' explanations of why they declined to contribute their samples to a future genomic research biobank.
OBJECTIVES
To (1) identify themes emerging from explanations for declining contribution to the research biobanking initiative and (2) determine how the content informs the stewardship conceptual framework that addresses evidence-based clinical ethics practices in genomic and genetic research biobanking.
METHODS
This qualitative study used an analytic method that combines inductive and deductive approaches to identify themes in patients' explanations for declining to contribute to a research biobank initiative. The hybrid design has relevance to health services research that seeks to develop taxonomy, themes, and theory.
RESULTS
Inductive approaches showed that themes of intrusion and autonomy dominated explanations. Deductive approaches affirmed previously proposed elements of a stewardship conceptual framework that addresses ethics in biobanking.
CONCLUSION
Research in understanding patients' perceptions can guide nursing and biobank practices in developing best practices.
背景
由于基因组研究需要前所未有的大样本量，医疗保健系统越来越要求患者在重症监护入院时提供生物样本，用于未来基于基因组的健康研究。很少有报告描述患者对临床环境中实际生物库方法的看法和反应。本研究采用定性研究方法，对 568 名心脏护理患者进行了调查，以探讨他们拒绝将样本捐献到未来基因组研究生物库的原因。
目的
（1）确定从拒绝参与研究生物库计划的解释中出现的主题；（2）确定内容如何为管理概念框架提供信息，该框架解决基因组和遗传研究生物库中基于证据的临床伦理实践。
方法
本定性研究采用了一种综合归纳法和演绎法的分析方法，以确定患者对拒绝参与研究生物库计划的解释中的主题。混合设计与旨在开发分类法、主题和理论的卫生服务研究相关。
结果
归纳方法表明，入侵和自主的主题占主导地位。演绎方法肯定了先前提出的管理概念框架的要素，该框架解决了生物库中的伦理问题。
结论
关于理解患者感知的研究可以指导护理和生物库实践，以制定最佳实践。
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