Developing new ways to listen: the value of narrative approaches in empirical (bio)ethics

Abstract

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics.

Finding the balance between person-centred and treatment-centred discussions in advance care planning—a qualitative analysis of conversations within the MUTUAL (Multidisciplinary Timely Undertaken Advance Care Planning conversations) intervention using a narrative analysis

“…For the qualitative analysis of the ACP conversations, we chose to take an alternative approach to conducting a thematic analysis. A potential drawback of thematic or content analyses is that they sacrifice depth and context in the process of collating and generalising the content of individual interviews [ 9 ]. Roest et al .…”

“…[ 9 ] provide a practical template for a narrative analysis aimed ‘at fostering a more in-depth understanding of the persons and practices being studied’ and ‘helping researchers trained in medicine and bioethics access valuable insights and techniques from interpretivist traditions’ . According to this proposed narrative approach, a systematic analysis [ 10 ] can be enriched by paying attention to narrative features and contextual levels in order to better understand what is said in qualitative interviews, how and in what context [ 9 ]. ACP conversations are complex conversations since various topics are discussed between patients, proxies and healthcare professionals.…”

“…In order to honour and maintain the richness and variety of these the conversations, we adapted the narrative approach of Roest et al . [ 9 ] for this study.…”

The impact of persistent precarity on patients’ capacity to manage their treatment burden: A comparative qualitative study between urban and rural patients with multimorbidity in South Africa

“…This paper is one of the outputs of a qualitative study “Exploring the treatment burden and capacity for self-care amongst people living with HIV/NCD multimorbidity in South Africa to inform the development of interventions to reduce workload and improve capacity” (EXTRA) ( 46 ). We used the method of in-depth, qualitative, individual interviews, which allowed an interpretivist narrative approach where participants were encouraged to share their life-stories and personal experiences of living with multimorbidity ( 47 , 48 ). We used a semi-structured interview guide with open-ended questions adapted from the Burden of Treatment questionnaire (BTQ), BoTT and concepts from the CuCoM to explore individual patient and carer experiences ( 39 , 40 , 49 ).…”

Why we should not mistake accuracy of medical AI for efficiency

“…However, historical research indicates that such hopes are only rarely, unequivocally fulfilled 10 . The systemic effects of these technologies can often only be assessed years after their introduction with the help of historians, philosophers of technology, sociologists, and empirical insights into the day-to-day experiences of users themselves 19 . In other words, we cannot be sure of the systemic effects before the technology is introduced to the clinic.…”