The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study

Abstract

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.

Editorial

“…In their analysis of women’s perceptions of risk associated with familial breast-ovarian cancer, Mariya Lorke et al specifically focus on risk narratives, demonstrating that narrative construction and presentation is part of an ongoing process in which risk assessment is entangled with sometimes conflicting perceptions of identity, fate, and family. 6 For the women interviewed in the research, genetic testing is more than an event that happens to a woman. Rather, it is a…”

“…process that brings…attitudes, values, and ideas to the surface. This is the reason to suggest that patients’ explanatory models of risk, their general attitude towards health and disease, their lived experience and biographical background should be taken into consideration… 6 …”

“…Health literacy plays a crucial role in negotiating stress associated with genetic testing, Lorke et al explain; being health literate, women are more able to balance perceptions of the health system as a means of healing and as a source of anxiety. 6 …”