Understanding Usher syndrome
Understanding Usher syndrome through a holistic approach
Since 2015, the FMSH has been a partner of the National Research Agency’s “Investments for the future” project Light4Deaf, coordinated by Professor Sahel, director of the Institut de la Vision (Université Pierre et Marie Curie, Paris). This hospital-university research project, launched in March 2016, aims to obtain a better understanding of Usher syndrome, a rare genetic disease that causes both deafness and vision disorders. This unprecedented project has attracted a multidisciplinary team of humanities researchers, doctors and health-care professionals. The objective is to analyze the social, psychological and medical processes at work in deafblindness in order to understand the day-to-day experience of persons having this disease.
Understanding the strategies and expectations of persons with Usher syndrome
The FMSH research team, made up of Sylvain Kerbourc’h (coordinator) and Sophie Dalle-Nazébi (researcher), handles the sociological and anthropological part of the SSH research for the project, based on a holistic and ecological approach to disability, in close collaboration with the psychologists of the Université Diderot Paris 7 and the physicians of the Paris public health authority AP-HP. This primarily qualitative research aims to understand the life trajectory, the adjustments (relational, communicational, informational, spatial, etc.) and the self-images of persons with Usher syndrome, including their relationship with medical care, technology and information. The focus will be on information intake and alternative means of communication used by the deafblind persons interviewed, in order to understand the living aids they use (or could use) and the initiatives they undertake in daily life to meet the challenges of this degenerative disability. The communication and adjustment practices of health-care professionals and auxiliaries with these patients will also be explored, as well as their own conceptions of deafblindness, research and autonomy. Lastly, the project aims to describe and understand the diversity of the identity building of deafblind persons, as well as the individual and collective strategies they pursue or consider to maintain or improve their quality of life.
Interviews are proposed to patients who participate or refuse to participate in the biomedical study that will examine the genes and the medical processes involved in this syndrome. The interviews concern their daily lives and life trajectories.
Interviews are also offered to patients’ families and to the health-care professionals and auxiliaries providing care.
Working groups based on the principles of sociological intervention will be established from early 2019, open to health-care professionals, Usher patients and their families.
A psycho-sociological questionnaire is also administered to all those concerned by deafblindness.
You can contact the research team at: firstname.lastname@example.org
Publications and communications
Sylvain Kerbourc’h, scientific and technical manager
Sociologist, associated at the Centre d’Analyse et D’Intervention Sociologique Cadis-EHESS Paris
Sophie Dalle-Nazébi, researcher
Sociologist and anthropologist, associated at the Laboratoire d'Études et de Recherches Appliquées en Sciences Sociales (LERASS), Université de Toulouse 3
Anne-Lise Granier, researcher
Anthropologist, associated at the LISST (Laboratoire Interdisciplinaire Solidarités Sociétés Territoires), Université Toulouse Jean Jaurès (UT2J)