Predictive and preventive medicine play an increasingly important role in public debates on health, providing cutting-edge technologies with the potential to measure and predict individual risks of getting ill. This leads to an ever-expanding definitional space between being “healthy” and being “ill”, challenging the individual’s everyday life, attitudes and perceptions towards the self and the process of health-related decision-making. “How do the condition of ‘being at risk’ and individual health literacy interrelate?” is the leading question of the current contribution. Drawing on empirical qualitative data, collected by means of narrative interviews with persons at risk in four clinical fields, a bottom-up ethnographic and health sciences perspective on health literacy (with an emphasis on critical health literacy) is employed. The findings will be embedded within theoretical approaches dealing with power relations and communication in healthcare encounters, particularly Habermas’ theory of communicative action. The core outcome of our study is a concept for an overarching model of health literacy in the context of health-related risk prediction across indications, based on empirical insights gained through interpretative analysis of the four clinical domains.
The continuous development of medical implants offers various benefits for persons with chronic conditions but also challenges an individual’s, and the healthcare system’s, ability to deal with technical innovation. Accessing and understanding new information, navigating healthcare, and appraising the role of the implant in body perceptions and everyday life requires health literacy (HL) of those affected as well as an HL-responsive healthcare system. The interconnectedness of these aspects to ethically relevant values such as health, dependence, responsibility and self-determination reinforces the need to address HL in implant care. Following a qualitative approach, we conducted group discussions and a diary study among wearers of a cochlear, glaucoma or cardiovascular implant (or their parents). Data were analysed using the documentary method and grounded theory. The data reveal the perceptions of implant wearers regarding the implant on (1) the ability to handle technical and ambiguous information; (2) dependence and responsibility within the healthcare system; and (3) the ethical aspects of HL. Knowing more about the experiences and values of implant wearers is highly beneficial to develop HL from an ethical perspective. Respective interventions need to initially address ethically relevant values in counselling processes and implant care.
In the process of developing and implementing innovative implant technologies the consideration of patient preferences can be beneficial for patients, doctors and developers. Nevertheless, in existing literature, there is still scarce knowledge of patients’ perspectives on long-term implant care. In this study, three discrete choice experiments (DCEs) were conducted in the context of cochlear implants (CI, n = 92), glaucoma implants (GI, n = 21) and cardiovascular implants (CVI, n = 23), examining the relative importance of attributes of long-term implant care from the patients’ perspective. The participants chose between differently shaped options for implant-related care. The attributes of these care options were generated and selected based on previous literature reviews, group discussions and a diary study with patients. The choice data were analyzed via binary logit regression. In CI-DCE, the technological compatibility of the implant with newer implant models, accessories or devices from other manufacturers was highly valued by participants, whereas in GI-DCE the (in)dependency on glaucoma medication post-implantation had the greatest influence on participants’ choice behavior. In CVI-DCE, the attribute with the highest relative importance related to the means of securing long-term treatment success. In all three DCE, shared decision making was relatively important for participants. Our results emphasized the importance of an adequate transfer of technological advancements in implant care for promoting patient benefits, such as the availability of comprehensible, understandable, high-quality information about current developments. Similarly, promoting technological health literacy and further pushing the technological compatibility, durability and safety of implants are directions for future implant development in accordance with patients’ preferences. Therefore, the participation of implant wearers in the development process is encouraged.
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