Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study
Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study
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DOI：
10.1136/bmj.39097.582639.55
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发表时间：
2007-03-10
影响因子：
105.7
通讯作者：
Worth, Allison
中科院分区：
文献类型：
--
作者：
Kendall, Marilyn;Harris, Fiona;Worth, Allison
目的了解研究生命终结问题的关键挑战，并确定克服这些挑战的方法。设计定性研究，包括对研究人员和受癌症影响的人群的深入访谈。参与者32名研究人员的国际样本; 7名癌症患者的经验;结果研究人员强调了定义的困难，生命的终结，道德委员会和临床工作人员的过度保护把关，需要考虑与恶化或死亡相关的高损耗率，并管理参与者和研究人员的情绪。受癌症影响的人和研究人员建议，许多接近生命尽头的人确实希望有机会参与研究，只要研究是敏感地进行的。虽然这样的研究可以要求，大多数研究人员认为，它是没有更多的问题比许多其他领域的研究，并确定的挑战是可以克服的conclusions周围的死亡和垂死的行为作为障碍的委托和进行结束生命的研究继续禁忌。然而，一些面临死亡的人可能想参与研究，应该被允许这样做。伦理委员会和临床工作人员必须平衡对非伤害性的可理解的关注与晚期疾病患者参与研究的权利。尽管存在固有的困难，但可以在伦理和方法上严格进行生命终结研究。必须为参与者、研究者和转录者提供充分的心理支持。
Objective To understand key challenges in researching end of life issues and identify ways of overcoming these.Design Qualitative study involving in-depth interviews with researchers and focus groups with people affected by cancer.Participants An international sample of 32 researchers; seven patients with experience of cancer; and four carers in south east Scotland.Results Researchers highlighted the difficulty of defining, the end of life, overprotective gatekeeping by ethics committees and clinical staff, the need to factor in high attrition rates associated with deterioration or death, and managing the emotions of participants and research staff. People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome.Conclusions The continuing taboos around death and dying act as barriers to the commissioning and conduct of end of life research. Some people facing death, however, may want to participate in research and should be allowed to do so. Ethics committees and clinical staff must balance understandable concern about non-maleficence with the right of people with advanced illness to participate in research. Despite the inherent difficulties, end of life research can be conducted with ethical and methodological rigour. Adequate psychological support must be provided for participants, researchers, and transcribers.