Résumé
Ethical issues are often difficult to discuss openly in clinical settings. However, silence can be detrimental to both patients and healthcare providers, and may impede improvements in clinical practices. In this paper, we report on the initial process of launching a living ethics initiative to identify, explore, and address a relevant ethical issue—that is, unaddressed psychological distress among people living with a rare or complex chronic disease—with the staff and patients of a highly specialized interdisciplinary care clinic in Montreal (Canada). Although previous research has addressed psychological distress, few studies have taken a participatory qualitative research and ethics approach, integrating the perspectives of both patients and healthcare providers. This paper specifically outlines the initial phases of a five phase living lab project, from identifying the issue to exploring stakeholders’ understanding of the problem. Semi-structured interviews were conducted with patients and clinic staff, followed by a qualitative content analysis that relied on deductive and inductive coding strategies. Overall, our study sheds light on the concept of psychological distress, causes of patients’ psychological distress, consequences of patients’ psychological distress, mitigating factors of patients’ psychological distress, management of patients’ psychological distress within a given healthcare environment, and potential avenues for improvement. By creating an ethical space where patients and healthcare providers could reflect on and discuss this issue, this initiative has not only deepened our understanding of patients’ psychological distress but has also initiated a paradigm shift in this clinical setting, recognizing that patients’ psychological distress is a fundamental human issue that concerns everyone.