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Short abstract:

The aim of this presentation is to explore the way in which different temporalities come into conflict with each other in the context of a study into the quality of life of visually impaired children and teenagers suffering from a rare eye disease.

Long abstract:

Socioanthropological studies in the field of health, because they attempt to capture as closely as possible the experiences of people affected by illness and disability, are a relevant entry point for understanding the contrasting realities and, more specifically, temporalities that can drive the various stakeholders involved in research: researchers, carers, patients and their relatives. The SeeMyLife study (2022-2025) is a mixed-method study which aims to measure the quality of life of children and teenagers suffering from severe visual impairment as a result of a rare eye disease. The study opens on a socio-anthropology of the complexity of social time (Sue, 1993), the contradiction and divergence that can exist in the uses of different ‘times’: that of research, that devoted to care, that of other aspects of daily life and that of personal projections. The time taken for research, for instance, can be difficult to understand in situations involving genetic diseases in young children: it seems frighteningly long compared with the speed of the child's growth (and of the disease) especially as they have difficulty projecting themselves into the future and have a very specific relationship with time, compared with the time experienced by able-bodied people (we draw here on the notion of 'Crip Time' : Samuels, 2017). We will also take a critical look at the constraints imposed in mixed-method research, which sometimes hinders the research process and further reduces the time that the researcher can devote to taking account of the experiences of the people involved in the study.