Investigating people's attitudes towards participating in longitudinal health research: an intersectionality-informed perspective.
Investigating people's attitudes towards participating in longitudinal health research: an intersectionality-informed perspective.
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DOI：
10.1186/s12939-022-01807-0
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发表时间：
2023-01-31
影响因子：
4.8
通讯作者：
AdvanceGender Study Grp
中科院分区：
文献类型：
--
作者：
Merz, Sibille;Jaehn, Philipp;Pischon, Tobias;Fischer, Beate;Wirkner, Kerstin;Rach, Stefan;Guenther, Kathrin;Obi, Nadia;Holmberg, Christine;AdvanceGender Study Grp
越来越多的证据表明，纵向健康研究的参与比例因性别、年龄、社会阶层或移民状况而异。交叉性学术主张，这些社会类别不能孤立地理解，并且使健康和疾病的社会决定因素的相互依存性质变得可见。本文采用交叉性知情方法来扩大对人们参与健康研究的原因以及交叉的社会结构和经验对这些态度的影响的理解。 80 名曾经接受或拒绝参加德国国家队列 (NAKO) 邀请的受访者参与了我们的访谈研究。访谈是半结构化的，既包含叙事元素，也包含更结构化的调查。数据分析分两步进行：首先，对整个数据集进行主题分析（分别针对参与者和非参与者）；其次，对自我报告的性别、年龄组和移民状况的关键主题进行比较，以找出差异和共同点。受访者对参与研究的态度可分为四个主题：想要做出贡献、寻求个性化健康信息、兴奋和感觉选择以及寻求社会认可。除了列举后勤方面的挑战外，非参与者还讲述了阻碍他们参与的科学和医疗保健系统的不良经历或态度。一系列的社会经历和文化价值体系塑造了这种态度；特别是，这包括科学作为社会问题仲裁者的文化权威，超越社会类别和边缘化经历。主要由女性受访者承担的护理责任也影响了参加 NAKO 的决定。我们的研究结果表明，对于参与者来说，健康研究构成了一个与众不同的场所，从某种意义上来说，它是有所作为、独特或可区分的，而非参与者的科学取向反映了他们通过科学的主观边缘化。因此，不能假定社会地位和对研究参与的特定态度之间存在明确的关系；相反，这种态度超越并挑战了绝对界限。这挑战了对特定人群或多或少处于不利地位或或多或少倾向于参与健康研究的理解。
Increasing evidence suggests that participation proportions in longitudinal health research vary according to sex/gender, age, social class, or migration status. Intersectionality scholarship purports that such social categories cannot be understood in isolation and makes visible the co-dependent nature of the social determinants of health and illness. This paper uses an intersectionality-informed approach in order to expand the understanding of why people participate in health research, and the impact of intersecting social structures and experiences on these attitudes. A sample of 80 respondents who had previously either accepted or declined an invitation to participate in the German National Cohort (NAKO) participated in our interview study. Interviews were semi-structured and contained both narrative elements and more structured probes. Data analysis proceeded in two steps: first, the entire data set was analysed thematically (separately for participants and non-participants); second, key themes were compared across self-reported sex/gender, age group and migration status to identify differences and commonalities. Respondents’ attitudes towards study participation can be categorised into four themes: wanting to make a contribution, seeking personalised health information, excitement and feeling chosen, and seeking social recognition. Besides citing logistical challenges, non-participants narrated adverse experiences with or attitudes towards science and the healthcare system that deterred them from participating. A range of social experiences and cultural value systems shaped such attitudes; in particular, this includes the cultural authority of science as an arbiter of social questions, transgressing social categories and experiences of marginalisation. Care responsibilities, predominantly borne by female respondents, also impacted upon the decision to take part in NAKO. Our findings suggest that for participants, health research constitutes a site of distinction in the sense of making a difference and being distinct or distinguishable, whereas non-participants inhabited an orientation towards science that reflected their subjective marginalisation through science. No clear relationship can thereby be presumed between social location and a particular attitude towards study participation; rather, such attitudes transgress and challenge categorical boundaries. This challenges the understanding of particular populations as more or less disadvantaged, or as more or less inclined to participate in health research.
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影响因子：
5.4
作者：
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通讯作者：
Tarrant, Carolyn
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作者：
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Witt CM
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Krist, Lilian