The Good, the Bad, and the Ugly: The Journey of an Architect-Researcher in Palliative Environments.

Abstract

As an architect, I felt a strong moral urge to engage in research aimed at creating more human-centred healthcare environments, particularly in the context of palliative care. Being relatively new to this field 4 years ago, my primary goal then was to develop a deep understanding of these unique contexts, with a special focus on the people involved. To achieve this, I embarked on an immersive ethnographic study over the last few years, involving participant observations in three distinct palliative environments (i.e., day-care centre, hospice, and palliative care unit) and interviews with residents, family members, caregivers, volunteers, and maintenance staff. While preparing to present this study to an ethics panel, I believed I had covered all possible questions until I was unexpectedly asked, "How will you consider your own emotional well-being?" At that moment (in the 1st year of my PhD trajectory), I was unsure how to respond, but today (in the 4th year of my PhD), I would say that my approach was to verbally and visually document the entirety of the experience, including the positive, negative, and challenging aspects. Throughout my journey, I maintained a journal not only to express my thoughts and feelings but also to capture the methodological and ethical insights I had gained while conducting interdisciplinary research on the spatial experiences of individuals within palliative environments. This article serves as a comprehensive overview of all significant events preceding, during, and following the study. The insights were organised according to 'the good, the bad, and the ugly' to shed light on the complexities and nuances of conducting research in this unique and sensitive domain. In doing so, the aim of my contribution is to inspire novice researchers to embark on such research studies and offer them guidance along this undoubtedly beautiful yet occasionally challenging journey.