Audrey Brugnoli, SACRe doctoral student at EnsadLab, recently published an article entitled Peaux Éthiques: une clinique sensorielle des relations et artifacts de soin par le design en dermatologie pédiatrique in the Revue Française des Affaires Sociales (RFAS), issue 2 of 2024. This article is part of the thematic dossier Ce que l’art et la culture font aux organisations de santé : dialogue fertile et expériences troublantes, coordinated by Carine Delanoë-Vieux, Sidonie Han and Françoise Liot.

The article focuses on the survey and immersion phase of her doctoral project carried out at the Hôpital Necker-Enfants malades AP-HP, in collaboration with the Imagine Institute and the laboratory of the Ecole Nationale Supérieure des Arts Décoratifs (EnsadLab). This research explores how a design approach can support the care of children suffering from hereditary epidermolysis bullosa, a rare genetic skin disease, and their families. Through a contributive methodology involving patients, caregivers and designers, the project aims to develop medical devices integrating a sensory and social dimension: ethical skins. This initial phase of immersion in the field enabled us to identify needs by cross-referencing the experiences of the various people concerned: the patients’ experience of the disease, and the experience of care by the carers and caregivers.

Extracts:

“The Peaux Éthiques doctoral project focuses on designing therapeutic devices centered on sensoriality, with the aim of fostering positive interaction between these children and their environment. […] By integrating care ethics into a design research-project approach, it involves healthcare and design actors in an iterative process.”

“The aim is not to develop a new high-performance wound dressing, but rather to design an object that complements existing medical devices. This would be designed in such a way as to integrate or, at the very least, take these devices into consideration, whether synchronously or not, so as not to compromise their indispensable therapeutic capacity.”