Parents and families of persons suffering from a mental disability: involvement, needs, and expectations, 20 years later
Picri Région Ile-de-France contract (2010/2013)
Coordinator : Martine Bungener
This project, the result of a collaboration between a research team (Cermes3) and the Unafam (Union Nationale des Amis et Familles des Malades et Handicapés Psychiques), aimed at exploring the perceptions, difficulties, needs, and aspirations of the families of persons suffering from a mental disability based on questioning by the families themselves. It falls under the extension of a survey conducted in 1991 among the members of the Unafam, which aimed to determine the exact place of residence of persons suffering from serious and chronic mental disorders such as schizophrenia, and to evaluate the assistance they required to live in an ordinary environment as much as the support provided to them by their families. This questioning was taken into a new context marked both by the rise of a new set of actions in favor of persons suffering from mental disability since the beginning of the 2000s and by the emergence in the social sciences of themes more focused on the burden of the disease and of the patients on their close relations. The project was based on a questionnaire prepared jointly by the team of researchers and the families, reflecting their experience as closely as possible, specifically aimed at questioning the subjective and objective dimensions of the assistance provided to the persons and the importance of caregiving for the caregivers, and at understanding the ways in which this burden was experienced depending on the social context, the family and the staff. It was intended to give visibility to a scarcely visible population and to the “anxious watcher” function of this entourage.
Members of the project: Martine Bungener, Nicolas Henckes, Lise Demagny, Dominique Mahut and the Unafam