How workplaces produce or reduce disability along the career paths of young people with cystic fibrosis.

Using the theoretical perspective of "social participation" as considered in the Human Development-Disability Creation Process, this article examines certain obstacles and facilitators to sustainable access to work among young French adults with cystic fibrosis. Drawing from the analyses of 29 qualitative interviews, the results show how such obstacles do not depend solely on their health status or on the medical management of the illness, but also on the work environments that these young professionals have recently entered or are trying to access. In these contexts, managing information about the illness can represent a means of obtaining cooperation from colleagues and superiors to reduce material or organizational obstacles (e.g. adapted work schedules), as well as a means of preventing socially uncomfortable or disabling situations. In this light, the social participation model can complement Corbin and Strauss' illness trajectory model, by setting the multi-factorial disabling or participatory situations along illness or medical trajectories. This enables dynamic consideration of how workplaces contribute to producing or reducing disability, in interaction with the actions taken by young people with cystic fibrosis to manage their career paths but also the evolution of illness, symptoms, or medical requirements.

Du modèle médical vers un modèle social de l'autonomie des personnes atteintes de mucoviscidose. Une étude sociologique du point de vue des acteurs professionnels et associatifs.

Patient autonomy is an equivocal notion that refers to several intertwined figures. What is expected of young cystic fibrosis patients when speaking to actors (professionals and associations) involved with them ? In this sociological contribution, we show the limits of a medical model of autonomy that does not allow us to think about a whole series of micro-adjustments to the practices of people with cystic fibrosis. The analysis is based on publications by national associations fighting against cystic fibrosis, and on semi-structured interviews with professionals working with people living with this disease. It shows that autonomy is not only thought of by the professionals who support them in terms of an individual management model centered on the patient's medical skills and personal resources, but also as the result of environmental factors. It reveals an innovative characteristic of autonomy in the field of health care, largely supported by the specialized and reinforced medical support of coordinating nurses. This support allows the development of a detailed clinical knowledge of the situations experienced by their patients.

[Delicate transition: Building-up an adult life for young people with developmental chromosomal anomalies]. / Délicates transitions - Construction d'une place d'adulte pour des jeunes vivant avec une anomalie chromosomique du développement.

A qualitative study was performed in the South of France among young people (16-25 years) affected by chromosomal anomalies: Down, velo-cardio-facial, or Williams-Beuren syndromes. We conducted interviews with them and with their parents to understand the obstacles to social participation that they most frequently face when becoming adults. Once their education comes to an end, young adults with developmental anomalies face several difficulties to develop and keep diversified social ties and to find their place in society, be it with a stable job - either in the ordinary working environment or in sheltered employment - or by attending occupational workshops. While parents are mostly concerned with finding a professional place for their children, the latter seem to especially value opportunities for satisfactory relational dynamics outside of the protective frame of the family. Nevertheless, a wish for familial protection keeps coexisting with their wish for independence.

TITLE: Délicates transitions - Construction d'une place d'adulte pour des jeunes vivant avec une anomalie chromosomique du développement. ABSTRACT: Nous avons mené une étude qualitative par entretiens individuels et collectifs (focus groups) auprès de jeunes (de 16 à 25 ans) touchés par une anomalie chromosomique (trisomie 21, microdélétion 22q11.2 associée au syndrome vélo-cardio-facial, ou microdélétion 7q11.23 associée au syndrome de Williams-Beuren) et de leurs familles, afin de comprendre les obstacles à la participation sociale qu'ils rencontrent lors du passage à l'âge adulte. Confrontés à de nombreuses contraintes pour développer des liens sociaux diversifiés et pour trouver une place sociale, professionnelle ou non, après la scolarité, ces jeunes semblent attribuer la plus grande importance à une dynamique relationnelle positive en dehors de l'espace familial, dont ils continuent toutefois de souhaiter la protection.

Perceived HIV-related physical fatigue, sociodemographic characteristics and physical activity: A cross-sectional study.

AIMS AND OBJECTIVES: To get a deeper understanding of correlates of perceived HIV-related fatigue by exploring its associations with sociodemographic characteristics and physical activity level of HIV-infected people. BACKGROUND: Previous studies on HIV-related fatigue have mainly focused on physiological and psychological characteristics, but few have considered its associations with sociodemographic variables. In addition, while physical activity has been found to reduce acute fatigue among HIV-infected people, its links with chronic HIV-related fatigue remain to be explored. DESIGN: The study employed an observational and cross-sectional survey design. The manuscript was organised according to STROBE guidelines. METHOD: A total of 560 people living with HIV in France completed a measure of perceived physical fatigue using the Fatigue Intensity Scale. The predictors targeted sociodemographic characteristics and two measures of individuals' reported level of physical activity. Data were analysed by a stepwise multiple regression model. RESULTS: The results showed that lower age, higher physical activity level and socio-economic status were significantly associated with reduced perceived physical fatigue, explaining 25% of the variance. CONCLUSIONS: The results highlighted the importance of considering sociodemographic and lifestyle characteristics to better characterise HIV-related fatigue, in particular in an era where HIV as a chronic illness challenges questions of quality of life throughout increasingly longer lifespans. RELEVANCE TO CLINICAL PRACTICE: The results of this study have implications for HIV care professionals in terms of improving strategies for managing chronic fatigue or promoting physical activity according to more specific profiles of HIV-infected people.

To be or not to be sick and tired: Managing the visibility of HIV and HIV-related fatigue.

This article takes a new direction in exploring HIV-related fatigue by adopting a qualitative interactionist approach. We analyse the social meanings attributed to fatigue among people living with HIV in France, the social gains and losses of its visibility and the social frames that condition its discursive and physical expression. The two-part methodology combines grounded theory analysis of 50 transcribed unstructured interviews conducted across France and participant observations within four HIV-related associations. Results reveal that the visibility of fatigue is in part dependent on the visibility of this stigmatized illness. The expression of fatigue is therefore closely linked with disclosure and concerns about HIV stigma. The degree to which HIV and HIV-related fatigue are rendered (in)visible also depends on structural factors including gender prescriptions, as well as context effects such as the type of social or 'care' relations involved in the social frame of interaction.

[Body image and participation in physical activities by obese subjects]. / Rapport au corps et engagement dans les activités physiques chez les personnes en situation d'obésité.

From a sociological perspective, physical activity and diet are perceived as social and cultural practices, constructed and transmitted within human societies. The body is then thought of as a social construct, a sign and foundation of individual and collective identities. In this context, this article was designed to highlight some social processes underlying the obesity epidemic. Clarifying issues about a medical definition of obesity in an obesogenic society, and theoretical approaches to the meanings of the obesity epidemic are proposed. Individual stories of a gradual shift towards obesity are presented to illustrate the variety of trajectories that can lead to obesity in adulthood but also the variety of subjective experiences about the situation of obesity. In particular, the relationship to the body and experiences in terms of physical activity are investigated in order to understand how obesity is associated with non-commitment, low commitment or abandonment of physical activity. The issue of configurations in which commitment or re-commitments in regular exercise for sedentary populations can be possible are discussed. The discussion shows that although commitment to regular and sustainable physical activity requires a profound transformation of lifestyle for the persons concerned, the collective dimension of this change is rarely taken into account..

[Development of valorization of physical activity: the role of HIV associations]. / La construction de la valorisation de l'activité physique : le rôle des associations VIH.

With the arrival of triple combination therapy in 1996-1997, HIV infection, considered up until then to be a life-threatening condition, changed statuses within the realm of public health actions Progressively likened to a "chronic illness", the discourse on HIV prevention targeting people living with HIV (PLHIV) began to evolve. A review of the scientific literature and the journals of four national HIV associations published between 1990 and 2010 shows that physical activities, previously discouraged because considered to be dangerous, have become increasingly presented as a means of improving quality of life and are increasingly recommended for PLHIV. This article studies this reconfiguration of the discourse on HIV prevention, as well as its effects on the discourse conveyed by HIV associations. The article shows how the new classification of HIV as a "chronic illness", on the basis of scientific expertise, has led to a modified discourse on prevention, including the recommendation of regular and controlled physical activity. This new orientation has contributed to the restructuring of HIV associations which relay this discourse and modify their organization and services, increasingly offering access to physical activities. However, this raises the question of the effects of this new representation of physical activities, as there has been little conside-ration of the difficulties encountered by PLHIV to respond to these repeated encouragements to modify their lifestyles in order to be "good" chronically ill patients. .