Polyhandicap, profound intellectual multiple disabilities : Concept and definition of a highly specific public health issue.

OBJECTIVES: The concept of polyhandicap first emerged in the late '60s in France, with actually a consensus on its definition. This consensus has yet to be reached internationally. The absence of an international consensus on a definition and name for persons with polyhandicap limits progress in research and health planning for these people. METHODS: This article describes the history of the emergence of the concept of polyhandicap in France and internationally. RESULTS: The emergence of the concept and definition of polyhandicap is part of the history of the development of special education and care for children with disabilities started at the end of the 19th century and during the first half of the 20th century. In France, between 1970 and 2002, working groups composed of professionals and family associations gradually developed and refined the definition of polyhandicap, differentiating it from other clinical entities such as cerebral palsy. Internationally, the term polyhandicap is used in 4 European countries: in France where it first appeared, in Italy, in French-speaking Belgium, and in French-speaking Switzerland but also outside the EU. Various terms may be used around the world to describe clinical entities similar to polyhandicap; the most frequently used in the literature is the term Profound Intellectual and Multiple Disabilities (PIMD) or PIMD Spectrum which does not systematically refer to an early brain injury. DISCUSSION: We are currently in the process of internationalizing the concept and definition of polyhandicap, and hopefully, as was the case for cerebral palsy in the 2000s, the various research teams working on this subject around the world will create collaborations and research networks targeting this specific population. CONCLUSION: A consensus around a precise definition of polyhandicap is important to ensure that these people are recognized for their uniqueness and specific qualities and to provide them adapted care.

From loss to repair. A study of body narratives in patient claims for medical injury.

In this article we examine the body's status in the complaints that patients filed with a compensation agency. Taking a corpus of letters, we analyse the way in which the patients mobilise their bodily experience from the angle of the damage for which they demand compensation. To this end, we articulate an approach in terms of the sociology of complaint with an approach rooted in the sociology of medicine, health and illness. To analyse the body narratives, we use the notion of loss. We highlight the manner in which patients approach their losses as 'losses in practice'. These losses are defined by the patients putting forward the concrete experience of a body harmed by the treatment received, and by their formulation of expectations in terms of compensation. We therefore identify four ways in which the reality of the damaged body is given a form in terms of expectations of repair: the 'body-producer', the 'body-ecological', the 'body-help' and the 'body-self-image'. Our analysis adds to studies on the status of the body in care and in complaint by showing: the specific influence of the enunciative situation, the plurality of patient evaluations and their temporal dynamic.

Universal design and the challenge of diversity: reflections on the principles of UD, based on empirical research of people's mobility.

PURPOSE: The author analyses some theoretical presuppositions of the Universal Design approach. She shows that it is based on two paradoxes: (1) it reduces diversity to the "universal", (2) it depends on an asymmetrical view of abilities and disabilities. The author suggests a way of changing this concept in order to take into account uniqueness and diversity, in order to allow the shaping of abilities. METHODS: The data are taken from an ethnographical survey carried out between 2007 and 2009 made up of in-depth interviews with wheelchair users and their families. The interviews were analysed inductively using the Nvivo© programme. RESULTS: The mobility of people in wheelchairs, and their capacity to act, are linked to their particular experience and are the result of a process of adjustment and arrangement. This process involves specific and varied resources and leads to changes in the individuals, in their dis/abilites, but also in their perceptions. CONCLUSIONS: This analysis leads to a change in the question of policy. This question is no longer "how to include diversity using the definition of 'universal'", but "how to bring out and articulate this diversity, so as to vary the qualities of persons and the world in which they live". Implications for Rehabilitation "Inaccessibility" is analysed in terms of a discrepancy between the user and her/his environment and in terms of experience. Accessibility is analysed as a process of adjustment and practical arrangements between the person and her/his environment. The universalism of Universal Design is criticized in the way it tries to force the variety of users into the uniqueness of one materiality. Emphasis is put on diversity and the necessity of articulating this diversity in a plural world offering various resources that individuals can call upon to act, depending on what they are and on what they want to become.

"No-fault" compensation for victims of medical injuries. Ten years of implementing the French model.

CONTEXT: For decades and in many countries, the issue of compensation for victims of medical injuries has led to lively debates. In 2002, a law set up a new model for compensation in France - based on the creation of a "no fault" compensation scheme and of an out-of-court settlement mechanism. This is one of the most recent models to have been adopted in European countries. This article analyses the choices made by the law and discusses the key figures of its ten years of implementation. METHODS: We conducted (1) a study of debates regarding compensation for victims of medical injuries in France; (2) a comparative analysis of the different models of compensation which had already been adopted in different countries; (3) a study of primary sources provided by the bodies in charge of the French new out-of-court settlement mechanism; and (4) a statistical analysis of the exhaustive list of 18,258 claims filed between 2003 and 2009. RESULTS: The article highlights the context which led to the adoption of the 2002 law on the quality of care and patients' rights. It analyses, from a comparative standpoint, the specificities of the new compensation model set up by the law. It shows how the opportunities for victims of medical injuries to be compensated had improved in France. Finally, we discuss the limits of the new model and what the next step might be to improve access to compensation for victims of medical injuries.

[Benchmarks for interdisciplinary health and social sciences research: contributions of a research seminar]. / Jalons pour une recherche interdisciplinaire en santé et en sciences humaines et sociales: apports d'un séminaire de recherche.

This article proposes a reflection on an interdisciplinary seminar, initiated by philosophy and sociology researchers and public health professionals. The objective of this seminar was to explore the mechanisms involved in setting up and conducting interdisciplinary research, by investigating the practical modalities of articulating health and human and social sciences research in order to more clearly understand the conditions, tensions and contributions of collaborative research. These questions were discussed on the basis of detailed analysis of four recent or current research projects. Case studies identified four typical epistemological or methodological issues faced by researchers in the fields of health and human and social sciences: institutional conditions and their effects on research; deconstruction of the object; the researcher's commitment in his/her field; the articulation of research methods. Three prerequisites for interdisciplinary research in social and human sciences and in health were identified: mutual questioning of research positions and fields of study; awareness of the tensions related to institutional positions and disciplinary affiliation; joint elaboration and exchanges between various types of knowledge to ensure an interdisciplinary approach throughout all of the research process.

Demographics of wheelchair users in France: results of national community-based handicaps-incapacités-dépendance surveys.

OBJECTIVE: To highlight the prevalence of manual and/or powered wheelchair use within the general French population living at home or in institutions, to describe the users and to identify factors determining wheelchair use. METHODS: Data were obtained from national community-based Handicaps-Incapacités-Dépendance surveys on disability and dependency carried out on 2 representative samples of the French population in institutions (n = 15,288) and at home (n = 16,945). RESULTS: The prevalence of wheelchair use is 62 per 10,000 people living in France. Forty-three percent of users live in institutions. They frequently show multiple impairments and severe disabilities. They have a mean age of 70 years and 64% are women. After taking confounding factors into account, results show that wheelchair use is not sex-related and decreases slightly with age. On the other hand, wheelchair use is related to widowhood, to the extent of impairments and disabilities, to confinement, to exposure to environmental obstacles and to institutional life. CONCLUSION: Sociodemographic studies on the use of wheelchairs need to pay greater attention to people living in institutions. The prevalence of wheelchair use in France appears to be far lower than in other western countries, and this observation needs to be examined further with intercultural comparisons.

Pain, disability and rehabilitation practices. A phenomenological perspective.

PURPOSE: Rehabilitation experts and disabled people are faced with the question of pain on a daily basis. This is a complex phenomenon with various different aspects: physiological, social, cultural and personal experience. In this article the author focuses on the personal experience of pain, i.e., the way in which it is experienced by the person in question and how it changes that person, his/her body and life; the author refers to cases of people who became disabled following a road accident or a neuromuscular illness, and takes a phenomenonological and philosophical standpoint. METHOD: The article is based upon ethnographical observations made in three settings: assistance departments set up by an association, a wheelchair test centre and a rehabilitation centre. RESULTS AND DISCUSSION: The experience of pain has been described as a rupture of a person's relationship with the outside world leading to a loss in capacity. Rehabilitation enables this link to be rebuilt by focusing on the body and thus changing the way in which the person feels his/her body. CONCLUSIONS: This analysis highlights the importance of how pain is experienced and how it is taken into account in rehabilitation practices, whilst at the same time showing how rehabilitation changes this experience.

To work or not to work? The occupational trajectories of wheelchair users.

PURPOSE: To throw light upon the dynamic processes which may or may not lead persons with severe motor disability to employment. METHOD: A qualitative approach to the chronology of both the professional and non-professional occupations of wheelchair users between acquisition of the disability and the interview; this approach focuses upon actions and meanings, thus allowing the authors to identify the diverse factors which help build the occupation situation at the time of the study. The narratives of 36 wheelchair users of working age were used. The objective of the analysis was to reconstitute the occupation trajectories of the participants and hence to suggest a typology. This involved pinpointing the various actors, the external and cognitive contexts of their decisions and actions, and their consequences and related feelings. RESULTS: The wide diversity found in the trajectories forced the authors to go beyond any simple notion of 'work versus non-work' and to focus on the quality of the individual's process of occupation appropriation. Indeed, it is possible to successfully appropriate both work and non-work situations, just as, inversely, it is possible for a person to fail to appropriate either type of situation. Analysis of this process allows one to pinpoint different types of trajectory. On the one hand, trajectories within which people appropriate their occupations--gradual, intermittent, through rupture and successive adjustment--and, on the other hand, unstable or endured occupation trajectories. CONCLUSIONS: The findings suggest that with regard to rehabilitation practices, we should be focussing as much on the appropriation process as on return to work.