Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer
Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer
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DOI：
10.1136/jme.2008.027839
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发表时间：
2009-07-01
影响因子：
4.1
通讯作者：
Higginson, J.
中科院分区：
文献类型：
--
作者：
Koffman, J.;Morgan, M.;Higginson, J.
引言：脆弱性在研究伦理学中是一个鲜为人知的概念，通常与自主和同意相一致。最近对文献的补充代表了基普尼斯提出的脆弱性分类，但这指的是临床试验的进行，而不是定性研究，这可能会引起不同的问题。目的：检查通过定性访谈获得的癌症脆弱性和姑息治疗研究的问题。方法：对26名加勒比黑人和19名英国白人晚期癌症患者的定性数据进行二次分析。结果：根据基普尼斯的分类，确定了四个脆弱性领域，包括：(1)沟通脆弱性，表现为参与者因痛苦症状而沟通能力受损；(2)体制脆弱性，指的是在他人授权下生存的参与者--例如，在医院中；(3)尊重脆弱性，包括服从他人非正式权威或独立利益的参与者；(4)医疗脆弱性，指的是身体状况令人痛苦的参与者；(5)社会脆弱性，包括被认为属于被低估的社会群体的参与者。来自两个种族的参与者填充了所有这些领域，但那些加勒比黑人更多地出现在社会弱势群体中。结论：当应用于生命末期的定性研究时，当前的脆弱性分类需要重新解释。我们建议研究人员和研究伦理委员会使用这项研究中确定的领域重新定义脆弱性的概念，并考虑研究背景和采访者的技能。
Introduction: Vulnerability is a poorly understood concept in research ethics, often aligned to autonomy and consent. A recent addition to the literature represents a taxonomy of vulnerability developed by Kipnis, but this refers to the conduct of clinical trials rather than qualitative research, which may raise different issues.Aim: To examine issues of vulnerability in cancer and palliative care research obtained through qualitative interviews.Method: Secondary analysis of qualitative data from 26 black Caribbean and 19 white British patients with advanced cancer.Results: Four domains of vulnerability derived from Kipnis's taxonomy were identified and included: (i) communicative vulnerability, represented by participants impaired in their ability to communicate because of distressing symptoms; (ii) institutional vulnerability, which referred to participants who existed under the authority of others-for example, in hospital; (iii) deferential vulnerability, which included participants who were subject to the informal authority or the independent interests of others; (iv) medical vulnerability, which referred to participants with distressing medical conditions; and (v) social vulnerability, which included participants considered to belong to an undervalued social group. Participants from both ethnic groups populated all these domains, but those who were black Caribbean were more present among the socially vulnerable.Conclusions: Current classifications of vulnerability require reinterpretation when applied to qualitative research at the end of life. We recommend that researchers and research ethics committees reconceptualise vulnerability using the domains identified in this study and consider the research context and interviewers' skills.