Research programs

access to outdoor activities
Members of the SANTESIH host team involved in the program :
  • Eric Perera, promoter (MCU University of Montpellier)
  • Nathalie Le Roux (MCU University of Montpellier)
  • Sylvain Ferez (MCU HDR Université de Montpellier)
  • Rémi Richard (MCU University of Montpellier)
  • André Galy (PAST University of Montpellier)
  • Olivier Obin (PAST University of Montpellier)
  • Thomas Riffaud (ATER University of Montpellier)
  • Geoffrey Lassalle (research associate, Université de Montpellier)
  • Gaël Villoing (MCU Université des Antilles et de la Guyane)
Background and rationale :

The adventure in the wilderness that seemed unthinkable for disabled people is becoming a reality, giving a new dimension to the handisport movement in France. This article looks at the pioneers who worked to make the most extreme natural environments accessible, and the means they deployed (innovation, networks, etc.) to create the conditions for the institutionalization of certain outdoor activities, such as handiskiing and FTT (Fauteuil Tout Terrain). What we want to understand is the history of the players involved - often disabled people who have taken matters into their own hands - as well as the involvement of current social mobilizations, which contribute to the development of these activities and involve human assistance and guides/volunteers.

Publications :
  • Perera E., Thaler R. and Galy A. (2021) " Les valeurs écoresponsables des expéditions en fauteuil tout terrain, un moyen de renforcer la mise en scène de la différence handi-capable ", Revue STAPS, pp. 27-38.
  • Perera E., Villoing G. and Galy A. (2020), "L'inventivité des alpinistes en fauteuil tout terrain: l'usage de la technologie au service de l'autonomie et de la mise en scène de la différence handi-capable", Nature & Récréation magazine, pp.41-51.
  • Perera E., Villoing G. and Ruffie S. (2019), "Devenir pilote handiski : valoriser la lenteur pour sécuriser l'expérience de glisse handisportive en station de ski", revue Nature & Récréation, pp. 21- 32.
  • Perera E. & Villoing G. (2019), "Adjusting deficiency to nature tourism: the case of a contemporary experience of expeditions using all-terrain wheelchairs (ATW)" Journal of sport and social science.
  • Le Roux N., Galy A. and Perera E. (2018), L'émergence du Fauteuil Tout Terrain en France entre bricolages et innovations: le rôle des pionniers de l'activité, Les carnets du Labex ITEM, Innovation et territoire de montagne . https://labexitem.hypotheses.org/680
  • Perera E., Villoing G., Ruffié S. & Gosset S. (2017), Le Fauteuil Tout Terrain, une " paire de chaussures de montagne " : expériences corporelles et reconfigurations identitaires, Science & Motricité. https://doi.org/10.1051/sm/2017013
  • Villoing, G., Perera, E., & Le Roux, N. (2017), The institutionalization of off-road wheelchair riding in France (1990-2015): 'truly a sport of sharing and diversity'. Sport in society, 'Be disabled, becoming champion', 1-14. http://www.tandfonline.com/doi/full/10.1080/17430437.2016.1273617
  • Perera, E., Villong G. (2016), Les pionniers du fauteuil tout terrain : " Fréquenter la montagne, mais autrement " en France de 1980 à nos jours, L'INqualifiable, Revue Numéro zéro, 39-43. http://fr.calameo.com/read/004732913c41fdc091983

AutiSport: Identifying the social barriers and levers to sports participation for people with autism spectrum disorders in the transition to adulthood.

paraperf

Under the direction of :

Rémi Richard

Research team :

Santesih Laboratory :

Rémi Richard

Yann Beldame

Sylvain Ferez

Eric Perera

SEP Laboratory, INSEP :

Hélène Joncheray

Valentine Duquesne

Fedération Francaise du Sport Adapté :

Elodie Couderc

Anne Marcellini

Fédération Francaise Sésame Autisme :

Christine Meignien

Financing :

IRESP, CNSA

Research summary:

The AutiSport project aims to analyze the reasons why adolescents and young adults aged 16 to 25 with ASD do or do not take up physical activity, and also to understand why some of them stop practicing sport when they reach adulthood. To do this, we want to reconstruct the different types of sporting trajectories of these 16-25 year-olds, by reinscribing them in the wider context of their educational and professional careers, within or outside medical-social institutions. More specifically, the aim is to observe the impact that the reshaping of their institutional and social trajectory - which occurs at the time of their transition to adulthood - can have on their sporting practice. Does the transition to the "ordinary" professional world or to a so-called protected institution, where young people aged 16 to 25 with ASD have new socializing experiences, favor the continuation of their sporting activities, their readjustment and/or transformation, or their gradual or even abrupt cessation?

getting out of obesity

Out of obesity through surgery? Longitudinal translational study of the post-operative course of patients

Members of the SANTESIH host team involved in the program :
  • Sylvain Ferez, project manager (MCU HDR Université de Montpellier)
  • Eric Perera (MCU University of Montpellier)
  • Anne Marcellini (PU University of Lausanne)
  • Geneviève Le-Bihan (PAST University of Montpellier)
  • Yann Beldame (Post-Doc Université de Montpellier)
  • Maguelone Rouvarel (Doctoral student, University of Montpellier)
Background and rationale :

While bariatric surgery is effective for severe obesity, weight loss is always insufficient, and weight regain occurs over time. In addition to the threat to the ideal figure achieved, there is the fear of losing the new social relationships established by sudden weight loss - particularly in the context of seductive relationships. Social pressure becomes heavy, as the fear of regaining a "fat" body brings with it a stigma associated with flabbiness and lack of self-control.

Primary and secondary objectives:

The originality of this work lies in its multidisciplinary approach to the experience and management of body transformations in obese people who have undergone bariatric surgery. More specifically, the longitudinal study aims to understand the evolution of eating and physical activity practices over the 12 months following surgery, demonstrating the interactions between biological, sensory and social changes. In this context, we will be looking not only at the effects of sudden physical changes, but also at the management of the upheaval of the "relationship to meaning" engendered by the rupture of a transformed body, and the accompanying reconfiguration of lifestyles and body practices (care, hygiene, leisure activities).

Publications :
  • Marcellini, A., Perera, E., Rodhain, A., Ferez, S. (2016), "Rapport au corps et engagement dans les activités physiques chez les personnes touchées par l'obésité", Santé Publique, 28/1.
  • Fortier V., Marcellini A. (dir.) (2014), L'obésité en question - Analyse transdisciplinaire d'une épidémie Bordeaux: Les Études hospitalières, Collection "À la croisée des regards".

Becoming an adult with a developmental disability: obstacles and facilitators (Devadulte-AD)

Members of the SANTESIH host team involved in the program :
  • Anne Marcellini (University Professor, Faculty of Social and Political Sciences, University of Lausanne and Santésih, University of Montpellier)
  • Sylvain Férez, Nathalie Le Roux, Rémi Richard (Lecturers, Santésih, University of Montpellier)
  • Laura Silvestri and Yann Beldame (PhDs in anthropology, post-doctoral students, Santésih, University of Montpellier)
Research program :

This research program, started in November 2015 and ending in October 2017, funded by the Rare Diseases Foundation through the 3rd call for projects "SHS & rare diseases" and by the University of Montpellier, results from the coordination of three structures bringing diverse but perfectly articulated skills, levels of questioning and objectives:

  • The Centre de référence sur les maladies rares et les anomalies du développement at Montpellier's CHU Arnaud de Villeneuve, headed by Pierre Sarda until June 2016 and then by David Geneviève.
  • The "Vivre avec une Anomalie du Développement en Languedoc Roussillon" regional health network, coordinated by Florence Margaill, which works closely with the Reference Center.
  • The social science research laboratory specializing in the sociological approach to health and disability issues, the Université de Montpellier's "Santé, Éducation et Situations de Handicap" (Health, Education and Disability Situations) host team no. 4614, headed by Sylvain Ferez.

The term "developmental anomalies" covers a wide variety of "rare diseases" that can lead to delays in intellectual development, more or less associated with behavioral disorders. In our society, these two types of difficulties are the ones that produce the most serious handicap situations for the people concerned. The aim of this research is to understand how people affected by these developmental anomalies can achieve a satisfying adult life. The aim is to identify the recurring obstacles and facilitators they encounter, depending on the environments in which they have had or will have the opportunity to live (family, educational, professional, etc.). The study will focus on a population of adolescents and young adults (aged 16-25) affected by three rare chromosomal anomalies: trisomy 21, 22q11 deletion and Williams and Beuren syndrome. The survey is based on questionnaires, life story interviews and focus groups. The expected results will shed light on the practices and questions of professionals in the field and families concerning the educational and professional orientation of these young people, their support in social and emotional life, the management of information concerning medical labelling and the analysis of its emotional, identity, family and social consequences. The aim is to improve the quality of support for these people as they move towards independent adulthood.

getting out of obesity

Out of obesity through surgery? Longitudinal translational study of the post-operative course of patients

Members of the SANTESIH host team involved in the program :
  • Sylvain Ferez, project manager (MCU HDR Université de Montpellier)
  • Eric Perera (MCU University of Montpellier)
  • Anne Marcellini (PU University of Lausanne)
  • Geneviève Le-Bihan (PAST University of Montpellier)
  • Yann Beldame (Post-Doc Université de Montpellier)
  • Maguelone Rouvarel (Doctoral student, University of Montpellier)
Background and rationale :

While bariatric surgery is effective for severe obesity, weight loss is always insufficient, and weight regain occurs over time. In addition to the threat to the ideal figure achieved, there is the fear of losing the new social relationships established by sudden weight loss - particularly in the context of seductive relationships. Social pressure becomes heavy, as the fear of regaining a "fat" body brings with it a stigma associated with flabbiness and lack of self-control.

Primary and secondary objectives:

The originality of this work lies in its multidisciplinary approach to the experience and management of body transformations in obese people who have undergone bariatric surgery. More specifically, the longitudinal study aims to understand the evolution of eating and physical activity practices over the 12 months following surgery, demonstrating the interactions between biological, sensory and social changes. In this context, we will be looking not only at the effects of sudden physical changes, but also at the management of the upheaval of the "relationship to meaning" engendered by the rupture of a transformed body, and the accompanying reconfiguration of lifestyles and body practices (care, hygiene, leisure activities).

Publications :
  • Marcellini, A., Perera, E., Rodhain, A., Ferez, S. (2016), "Rapport au corps et engagement dans les activités physiques chez les personnes touchées par l'obésité", Santé Publique, 28/1.
  • Fortier V., Marcellini A. (dir.) (2014), L'obésité en question - Analyse transdisciplinaire d'une épidémie Bordeaux: Les Études hospitalières, Collection "À la croisée des regards".

Becoming an adult with a developmental disability: obstacles and facilitators (Devadulte-AD)

Members of the SANTESIH host team involved in the program :
  • Anne Marcellini (University Professor, Faculty of Social and Political Sciences, University of Lausanne and Santésih, University of Montpellier)
  • Sylvain Férez, Nathalie Le Roux, Rémi Richard (Lecturers, Santésih, University of Montpellier)
  • Laura Silvestri and Yann Beldame (PhDs in anthropology, post-doctoral students, Santésih, University of Montpellier)
Research program :

This research program, started in November 2015 and ending in October 2017, funded by the Rare Diseases Foundation through the 3rd call for projects "SHS & rare diseases" and by the University of Montpellier, results from the coordination of three structures bringing diverse but perfectly articulated skills, levels of questioning and objectives:

  • The Centre de référence sur les maladies rares et les anomalies du développement at Montpellier's CHU Arnaud de Villeneuve, headed by Pierre Sarda until June 2016 and then by David Geneviève.
  • The "Vivre avec une Anomalie du Développement en Languedoc Roussillon" regional health network, coordinated by Florence Margaill, which works closely with the Reference Center.
  • The social science research laboratory specializing in the sociological approach to health and disability issues, the Université de Montpellier's "Santé, Éducation et Situations de Handicap" (Health, Education and Disability Situations) host team no. 4614, headed by Sylvain Ferez.

The term "developmental anomalies" covers a wide variety of "rare diseases" that can lead to delays in intellectual development, more or less associated with behavioral disorders. In our society, these two types of difficulties are the ones that produce the most serious handicap situations for the people concerned. The aim of this research is to understand how people affected by these developmental anomalies can achieve a satisfying adult life. The aim is to identify the recurring obstacles and facilitators they encounter, depending on the environments in which they have had or will have the opportunity to live (family, educational, professional, etc.). The study will focus on a population of adolescents and young adults (aged 16-25) affected by three rare chromosomal anomalies: trisomy 21, 22q11 deletion and Williams and Beuren syndrome. The survey is based on questionnaires, life story interviews and focus groups. The expected results will shed light on the practices and questions of professionals in the field and families concerning the educational and professional orientation of these young people, their support in social and emotional life, the management of information concerning medical labelling and the analysis of its emotional, identity, family and social consequences. The aim is to improve the quality of support for these people as they move towards independent adulthood.

making prison

 Manufacturing prisons

A study of "spatialities" in five Belgian and French prisons

Under the direction of :
  • Laurent Solini (SANTESIH EA 4614, University of Montpellier)
  • Jennifer Yeghicheyan (LERSEM-CERCE EA 4584-E1, University of Montpellier)
  • Sylvain Ferez (SANTESIH EA 4614, University of Montpellier)
Research team :
  • Jean-Charles Basson (Associate Professor, PRISSMH-SOI EA 4561, University of Toulouse 3)
  • Elsa Besson (Doctoral student, Histoire et Critique des Arts EA 1279, Université de Rennes 2)
  • Alice Jaspart (FNRS Research Fellow, Centre de Recherches Criminologiques ULB067, Université Libre de Bruxelles)
  • Sylvain Ferez (SANTESIH EA 4614, University of Montpellier)
  • Paul Landauer (Assistant Professor, AUSser-OCS UMR 3329, Marne-la-Vallée School of Architecture, Urban Planning and Territorial Development)
  • Gérard Neyrand (Professor, PRISSMH-SOI EA 4561, University of Toulouse 3)
  • David Scheer (Aspirant FNRS, Centre de Recherches Criminologiques ULB067, Université Libre de Bruxelles)
  • Laurent Solini (SANTESIH EA 4614, University of Montpellier)
  • Jennifer Yeghicheyan (Post-doctoral fellow, SANTESIH EA 4614, Université de Montpellier)
Research summary:

Punishment, control, discipline, deterrence, deprivation, amendment, instruction, therapy, rehabilitation and, more recently, the integration of certain urban principles: the functions associated with prison confinement are constantly multiplying, even in opposition to one another. The construction of prisons, from building programs to the first sketches and daily reorganizations, is riddled with illogicalities that a close observation of "spatialities" can reveal. A long-term ethnographic survey of five prisons in Belgium and France, combined with archival work, provides an insight into the various ways in which the spaces of confinement are appropriated. At the design stage, when the spaces are still only figurative, and during the operation of the establishment, once the premises have been inhabited, fitted out or even refurbished, the aim is to question the relationship between desired or tangible atmospheres and anticipated or existing uses. The functions, meanings and even identities attributed to spaces are primarily the result of positioning, orientation, the use of natural light, the use of certain materials or colors, and the presence of decorative elements, as much as the uses they are likely to accommodate. At the end of the day, it's prison spatialities that best reveal all the contradictions that underlie the creation of a "mosaic prison" with multiple missions and definitions, considered at the very least as the unsurpassed translation of punishment.

Financing :

Mission de recherche Droit et Justice

Related publications :
  • Solini L., Yeghicheyan J., Ferez S., 2019, Prisons. Usages et appropriations des espaces carcéraux, Editions de la Sorbonne, "Locus Solus", [http://www.editions-sorbonne.fr/fr/livre/?GCOI=28405100042770]
  • Jaspart A., Solini L., 2016, "Promenade. De l'étude d'un quartier mineurs par sa cour, Champ Pénal/Penal field, Vol. XIII, [http://champpenal.revues.org/9431]
  • Solini L., Scheer D., Yeghicheyan J., 2016, "A window to the outside world"? Ecologies of two prison spaces, Sociologie, 7, 3, 225-242, [https://sociologie.revues.org/2851]
Associated study days :
  • October 5, 2016 - "Fabricating the prison
  • September 17 and 18, 2015 - "Prospects for prison architecture".
  • June 26, 2014 - "Thinking prison architecture".
  • December 5, 2014 - "Comparing prison architecture".
body sport handicap

Members:

  • Anne Marcellini, Sylvain Ferez, Nathalie Le Roux, Eric Perera, Julie Thomas, Damien Issanchou, Elise Lantz, Yann Beldame, Estelle Duval and Marie-Christine Courrouy-Michel (SANTESIH, EA 4614, UM1).
  • Nicolas Bancel, Julie Cornaton and Stanislas Frenkiel (Institut des Sciences du Sport, University of Lausanne)
  • Sébastien Ruffié and Gaël Villoing (ACTES, Université Antilles-Guyane)
Research program :

The aim of the program was to take a socio-historical approach to analyzing the sports offer specifically aimed at people with disabilities. In particular, it sought to understand the conditions of emergence and development of this offer. Conducted in conjunction with the ACTES team at the Université Antilles-Guyane (S. Ruffié, MCU), the project was supported by the Mission " recherche " (MiRe) of the Direction de la recherche, des études, de l'évaluation et des statistiques (DREES) between 2009 and 2011. In addition to a section focusing on the structuring of a specific circus offer, thanks to the work of Elise Lantz ( PhD ), it focused on the study of the institutionalization of the handisport movement (1954-2008) in France, in connection with the international structuring of the Paralympic movement (based in particular on the work of Gaël Villoing and Damien Issanchou ( PhD )). To this end, it has benefited from a close partnership with the French Handisport Federation (FFH). Thanks to its support, two study days were organized in October 2011.

The results mainly concern: 1) the evolution of organizational structures (and in particular of the various federal structures) based on secondary sources, but also on original primary sources (newsletters of the various federations, administrative archives and personal archives) hitherto unexploited; 2) modes of mobilization and leadership careers, traced thanks to interviews of the life stories and practices type with several generations of leaders; 3) detailed knowledge of certain key associations or clubs (thanks to the production of monographs). These results enable us to put the history of the disabled sports movement into perspective, by comparing it with that of collective mobilizations in the field of disability (Paterson et al., 2000) and that of collective mobilizations through sport (linked to demands for women's integration or the fight against homophobic discrimination by LGBT movements).

Since 2013, the program has benefited from a new collaboration with Professor Nicolas Bancel (Institut des Sciences du Sport, University of Lausanne), who has obtained funding for a PhD (carried out by Julie Cornaton, co-directed by Sylvain Ferez) and a post-doctorate (carried out by Stanislas Frenkiel) from the Swiss National Research Fund for a project entitled: "A social history of the Swiss and French paralympic movements and their elites (1960-2010)". In addition to this initial comparative study between France and Switzerland, the program is now moving towards the prospect of a comparative study with the history of the Fédération du Sport Adapté (FFSA), examining the specific obstacles to access to top-level sport for people with intellectual disabilities.

Productions :

Since 2010, this program has produced 9 scientific articles, 11 book chapters, 1 research report and 3 book chapters, in addition to 24 conference papers (including 13 invited lectures). Three articles have been submitted to recognized journals in the field of sports history: The International Journal of the History of Sport, Stadion and European Studies in Sports History. Program members have also been asked to coordinate an issue (related to the work carried out) of the journal Corps (scheduled for publication in 2015).

The integration of athletes with intellectual disabilities into the Paralympic movement. Analysis of the sporting, institutional, social and identity-related consequences.

Members:
  • Anne Marcellini, Yann Beldame, Elise Lantz (SANTESIH, EA 4614, UM1)
Research program :

The aim of this project is to assess the repercussions of the reintegration of athletes with intellectual disabilities into the Paralympic movement in 2009. We believe there are two key points to bear in mind:

- On the one hand, a study close to the sporting field, focusing on the repercussions of Paralympic integration on athletes, the groups that support them in their sporting life and their usual social environments (families, professional space, any medical-social establishments in which they live, etc.). In this first line of work, we will take a biographical approach, using the concepts of careers, trajectories and bifurcation. The aim is to understand how intellectually disabled athletes enter high-level and Paralympic sports careers, and the socializing effects of such integration. We'll be looking at the conditions of sporting performance for these athletes, given that most of them have to reconcile their professional or training activities with the imperatives of top-level sport (intensive daily training). We also want to measure the potential destigmatization and emancipation effects of setting up such a performance production system for athletes with intellectual disabilities.

- On the other hand, we wish to focus our research as closely as possible on the decision-makers and federal officials of the FFSA (Fédération Française du Sport Adapté), and those in charge of other sporting bodies involved in the FFSA's integration into the Paralympic movement. The aim here is to study the federal organization and its institutional dynamics. This second reading will focus on organizational and institutional transformations. To this end, we will analyze the careers, practices and discourses of the FFSA's decision-makers and federal officials (at international, national, regional and departmental levels), as well as those in charge of the other sporting bodies involved in the FFSA's changing situation, in order to grasp the regulatory and organizational transformations.

Financing :

This research is being carried out in collaboration with the Fédération Française du Sport Adapté and with its financial support.

sport and hiv
Members:
  • Anne Marcellini, Sylvain Ferez, Nathalie Le Roux, Eric Perera, Estelle Duval and Mélanie Perez (SANTESIH, EA 4614, UM1).
  • Julie Thomas (Max Weber Center)
  • Barbara Triandoum (Université Antilles-Guyane)
  • Patrick Fougeyrollas (Laval University, Quebec City)
  • Isabelle Wallach (Université du Québec à Montréal).
Research program :

The program focused on the experience of the body and physical and sporting activities of people living with HIV (PLHIV), and the way in which this experience is constructed, from diagnosis onwards, in interaction with the discourses and devices proposed by community associations and organizations in the health and medico-social sectors. The program has benefited from the funding of several research projects carried out in collaboration with colleagues from several universities.

The first line of research concerns the experience of HIV and social participation. Between 2009 and 2012, a national survey using questionnaires (n=619) and interviews (n=50) on "Access to physical activities for people living with HIV" was carried out, in partnership with A. Lomo Myazhiom (University of Strasbourg, MCU), S. Ruffié (Université Antilles-Guyane, MCU), P. Liotard (Université Lyon 1, MCU), Stéphane Champely (Université Lyon 1, MCU), S. Héas (Université Rennes 2, MCU), with support from Sidaction and the Ile-de-France Region. In parallel, between 2011 and 2013, a survey by interviews (n=22) and participant observation of associative schemes (n=4) was carried out on the social participation of PLHIV in leisure activities in the Montpellier region, thanks to the support of the Mission recherche (MiRe) of the Direction de la recherche, des études, de l'évaluation et des statistiques (DREES) of the Ministère des Affaires sociales et de la Santé. Estelle Duval is carrying out her PhD as part of this second project, piloted in collaboration with Professor Patrick Fougeyrollas (Laval University, Quebec).

A second line of research focuses more specifically on the history and workings of HIV associations in Guadeloupe. It is the subject of a partnership with two teams at the Université Antilles-Guyane: ACTES (EA 3596), via S. Ruffié, and the CRPLC (UMR-CNRS 8053), via its director Justin Daniel, who co-directs Barbara Thiandoum's PhD with Sylvain Ferez. Between 2009 and 2012, the work was carried out thanks to funding from the research project "Milieu associatif de prise en charge du VIH/sida en Guadeloupe : rôle des personnes vivant avec le VIH et rôle des femmes" by the Fondation de France and the Agence Nationale de Recherche sur le Sida et les hépatites (ANRS). Since 2013 (and until 2015), they have been able to draw on financial support acquired from the Fondation de France for the research project "Rapports sociaux de sexe, contextes de vulnérabilité, situations de violence: étude comparée des trajectoires biographiques de femmes usagères, bénévoles et salariées dans les associations de lutte contre le VIH/Sida à Saint-Martin et en Guadeloupe".

The CIFRE grant (ANRT) obtained in 2013 for Mélanie Perez's PhD , in collaboration with the Sida Info Service association, is now opening up a new line of thinking around the question of the experience of the contaminating body and its management among people with "chronic infectious diseases". Two calls for tender were recently issued to the ANRS and the Gilead Sciences Endowment Fund, with a view to comparing the experiences of PLHIV with those of people mono-infected with HBV or HCV, or co-infected (HIV-HBV, HIV-HCV or HIV-HBV-HCV). A project for a "research initiation contract" has also been submitted, again to ANRS, to develop a survey on "HIV, relationship to the body and social participation: A comparative study of four regions in Europe (Languedoc-Roussillon), North America (Quebec and Montreal) and the Caribbean (Guadeloupe)", in collaboration with Patrick Fougeyrollas (Laval University, Quebec City) and Isabelle Wallach (University of Quebec at Montreal).

Productions :

Since 2010, 6 scientific articles, 8 book chapters, 3 research reports and 1 book direction have been produced on this program, in addition to 29 presentations at conferences and symposia (including 5 invited talks). One article is currently in shuttle (accepted with modifications) with the journal Loisir et Société; two are about to be submitted to the journals ALTER and Sex Roles. Given the considerable resources available to this program, a huge amount of data remains to be exploited.

MQESP-Muco

Measuring the Quality of School and Professional Environments for Adolescents and Young Adults with Cystic Fibrosis (MQESP-Muco)

Members:
  • Sylvain Ferez, Rémi Richard, Éric Perera (Lecturers, SANTESIH EA 4614, University of Montpellier)
  • Pauline Lewis (student, University of Montpellier)
  • Damien Issanchou (Post-doctoral fellow, SANTESIH EA 4614, University of Montpellier).
  • Laura Silvestri (Post-doctoral fellow, SANTESIH EA 4614, University of Montpellier).
Research program :

Medical advances in recent years have considerably transformed the life prospects of people with cystic fibrosis. Young people affected by cystic fibrosis are now able to attend near-normal school, study and so on. Nevertheless, for these teenagers and young adults anxious to be "like everyone else", daily life is marked by doubt and anxiety, particularly that of not being able to conceal their illness. In the face of these difficulties, one of the preferred strategies is often disengagement from social activities and reduced compliance, sometimes even to the point of abandoning care. Drawing on the theoretical field of the "social model of disability" (Fougeyrollas), the main aim of this study is to uncover the major obstacles and facilitators to social participation encountered within two specific environments that patients now have the opportunity to frequent: school and the world of work.
The expected results concern the identification of the effects (positive and/or negative) of environmental variables (linked to the characteristics of the environments frequented) and interactional variables (linked to the multiplicity and qualities of the interactions experienced) on patients' social participation. In the light of these variables, the hypothesis of an aggravation of disorders and deficiencies by the immersion of these young people in environments that have not developed the capacity to recognize their specific difficulties needs to be tested. The project's added value is to shed light on the reasons (which are not solely medical) for the social, educational, professional and even health-related disengagement (neglect of care) of adolescents and young adults with cystic fibrosis.

Financing :

Association Grégory Lemarchal

Members:
  • Nathalie Le Roux, Michaël Segon, Anne Marcellini, Marie-Christine Michel-Courrouy (SANTESIH, EA 4614, UM1).
  • Montserrat LLINARES (DISQUAVI, Universitat Blanquerna, Barcelona)
  • Maks BANENS (Max Weber Center, UMR 5283, CNRS)
  • Stéphane CHAMPELY (CRIS, EA 647, Université Lyon 1)
  • Bruno GENDRON (Orléans Economics Laboratory, UMR 7322, TOTEM team, University of Orléans)
Research program :

The aim of this research is to understand the relationship between disability and the world of work, and in particular to examine the influence of qualification levels and types of disability on access to employment. They are in line with policies to ensure access to higher education for young people and the professional integration of "disabled workers", reinforced by the 2005 French law and the entire European legislative framework. There is a strong social demand for precise data on the effectiveness of the compensation systems proposed and on equal opportunities in access to employment for disabled people. This project is part of this dynamic. The only available national survey dates back to 1999 (Palauqui, Lebas, 1999).

Three research projects have been funded over the period (IRESP, 2008; MIRE-DRESS 2010-2012; ongoing AGEFIPH 2012-2014). In the course of these, we carried out a review of available knowledge and proposed problem areas (Le Roux, Marcellini, 2011), conducted a secondary exploitation of the GENERATION 2004 survey (Céreq, 2008) and developed a questionnaire and survey protocol tested with AEHs at Montpellier 1 University and improved thanks to a wave of in-depth interview surveys (n=25). This has enabled us to propose recommendations to decision-makers on how to take this population into account in future general population surveys.

A national survey of students who have benefited from special arrangements due to a disability or health problem is currently being subsidized by AGEFIPH. Thanks to the many partnerships forged with university support services for disabled students, the aim is to gather detailed data on a wide range of aspects of individual trajectories (disabilities and their evolution; use of facilities during studies, job search and employment; associative and social participation; daily life and time constraints).

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Productions :

LE ROUX N., MARCELLINI A. (2011). L'insertion professionnelle des étudiants handicapés en France. Revue de questions et axes de recherche, ALTER, Vol. 5, n°4, 281-296.

LE ROUX N., SEGON M. (2011). Des études à l'emploi : quelles trajectoires pour les étudiants handicapés, Colloque Université Handicap, Montpellier November 19, 2011.

SEGON M., BANENS M., CHAMPELY S., LE ROUX N. (2012). Les parcours d'insertion des anciens étudiants handicapés : état des lieux statistique et perspectives de recherche, Colloque Travail Emploi Politiques Publiques, 14-15 Juin 2012, Université de Caen.

SEGON M., LE ROUX N., (2012). Étude du devenir des anciens étudiants handicapés : une exploitation secondaire de Génération 2004 (Céreq) et analyse de récits d'insertion, Report on the DRESS/MIRE research contract.

LE ROUX N. (2012), Culture associative, famille et handicap : le cas des étudiants handicapés, 7th SIICLHA, December 6-8, 2012, University of Rouen.

SEGON M., LE ROUX N., (2013). Parcours de formation et d'accès à l'emploi des anciens étudiants handicapés : formes de recours aux dispositifs et dynamiques identitaires, Agora Débats/Jeunesses, n°65.

LE ROUX N., SEGON M., (2013). Les trajectoires des anciens étudiants handicapés : regard statistique et ressentis des individus, International symposium "Disability between individual trajectories and institutional logics: employment, work, social policies", April 11-12, 2013, University of Lille 3.

SEGON, M., LE ROUX, N., BANENS, M., CHAMPELY, S. (2014). What statistical data can be used to measure the pathways into working life for young students with disabilities, Revue Française des Affaires Sociales, n°1-2 2014.