LEARNING FROM THE PATIENTS

A.V. Penati, C.E. Standoli

Politecnico di Milano, Department of Design (ITALY)
For patients, the domestic healthcare experience represents a set of complex activities and behaviours, giving rise to: a real process of spatialisation of the disease and therapy, real domestic liturgies, and real learning processes within which are included the learning of organisational techniques, of body techniques, of memory techniques, of techniques and devices of discipline and for self-discipline, etc.
In this learning process, there is a sort of training of the body in ways of doing, in ways of saying, in recurrent gestures, in cognitive expedients necessary to introduce the patient to the sphere of practical action at the basis of the experience of care. The cultures of the body, of illness, and of care play an important role. They fit in between the abstractness of pharma science, technological common sense and the value system that permeates the sphere of everyday life.
As happen in every learning process, the person's ability to understand and interpret the information they receive is an essential point. This ability is mediated by culture, competencies (e.g., related to languages like the native one or the more specific of care processes), previous experiences and the contexts in which the person is.
This article addresses the person's learning processes when facing a homecare path, where non-experts manage the culture, processes and practices of care. It shows the distance between the prescriptive modes elaborated by the pharma industry and the adaptive modes that identify a real learning style of the treatment practices. The evidence and examples documented through photos, interviews and questionnaires show how information about care is interpreted, translated and applied to objects or spaces. Dealing with medication, we can analyse how information is interpreted and implemented by the person through the positioning in the home, handling and manipulation, the notes handwritten on the packaging. We can talk about self-learning and adaptation of care processes and practices. Traditional care models often reduce complexity to a simple technical-functional dimension. The authors claim an alleged gap between bodily and technical gestures typical of the imprecision of everyday life and the precision of science. The authors focus on complex experiences that can integrate processes of self-literacy around medical objects and languages, everyday objects taken from other contexts, expected improvements of care objects according to the user's needs. The processes of adaptation to the individual physical and cognitive capacities that each patient presents are slowly retroacting on the processes of medication design and its life cycle within the pharma industry.
From a methodological point of view, the article presents a structured observation, an analysis of the data gathered and a final discussion. After defining the research context and the users, the phase of direct observation of people and their care processes in the domestic space is structured and presented. This qualitative observation was conducted on a proximity sample in the Italian context. This is followed by an analysis of the people's behaviour, habits, and rituals in the dialogue with the objects of care. This analysis opens to reflections on how the process of communication, understanding and interpreting the information takes place and how people adapt these in homecare context.