Lorke Mariya, Harzheim Laura, Rhiem Kerstin, Woopen Christiane, Jünger Saskia
Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne.
Center for Hereditary Breast and Ovarian Cancer, University Hospital Cologne, Cologne.
Qual Res Med Healthc. 2021 Oct 5;5(2):9647. doi: 10.4081/qrmh.2021.9647.
Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person's understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective-incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women's perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals' understandings of health and illness, and emphasizing the role of critical HL.
通过基因检测预测乳腺癌和卵巢癌风险的个性化方法，越来越需要人们理解并批判性地评估与风险相关的信息，以及在检测结果呈阳性时进行决策并采取行动。当前的研究旨在从自下而上的角度理解有患家族性乳腺癌-卵巢癌（FBOC）风险人群的健康素养（HL），即将他们的观点纳入研究过程。其定性设计整合了人种志叙事方法以及对10名接受过基因检测的女性进行叙事访谈的结果，并采用反思性扎根理论进行分析。收集到的数据揭示了这些女性在患病风险认知、自身身份认同以及健康管理策略方面的纠结。对这种相互作用的分析为从交流维度探讨健康素养提供了实证依据，考虑到个体对健康和疾病的理解，并强调批判性健康素养的作用。
