Gender and care in the context of rare diseases: exploring nuances of emotional support and the division of household labor.

This article explores the ways in which having a rare skin disease (pemphigus) can reveal and redefine individuals' interpersonal relationships and how they experience and use the support of loved ones. It examines two aspects of "care": emotional support and practical support (through the division of household labor). It takes a relational ontological approach that is especially attentive to the biographical repercussions of care, and its gendered dimensions in particular. Our analysis is mainly based on interviews with 25 individuals in France (13 women and 12 men) with pemphigus, a rare disease that affects the skin and mucus membranes that can be controlled through long-term medical treatment. Its burn-like lesions often take the form of blisters, making pemphigus a bullous disease. Use of the concepts of "caring for" and "caring about" prove heuristic in studying care relations, especially when taking a gendered perspective and probing underlying tensions. The distinction between caring "for" and "about" is also relevant to comprehending biographical disruption, which mainly results from a lack of emotional support when the negotiation of practical support has made it possible to normalize everyday life.

Taking care of oneself and others: The emotion work of women suffering from a rare skin disease.

In this article, we analyze the emotion work of women suffering from pemphigus, a rare skin disease. We suggest that this approach sheds new light on the upheavals caused by illness and more generally on the experience of illness itself. Our study draws on a series of 27 interviews with pemphigus patients whose average age was 57. We show that serious and chronic illness does not radically alter the feeling rules in place with close friends and family, despite the uncertainty and emotional upheaval confronting patients. The emotion work they carry out should be understood in light of roles and places established prior to the onset of the disease. Emotion work is embedded in the broader history of relationships with family and friends and prior episodes of illness help create particular configurations and expectations.

Social Media Platforms Listening Study on Atopic Dermatitis: Quantitative and Qualitative Findings.

BACKGROUND: Atopic dermatitis (AD) is a chronic, pruritic, inflammatory disease that occurs most frequently in children but also affects many adults. Social media have become key tools for finding and disseminating medical information. OBJECTIVE: The aims of this study were to identify the main themes of discussion, the difficulties encountered by patients with respect to AD, the impact of the pathology on quality of life (QoL; physical, psychological, social, or financial), and to study the perception of patients regarding their treatment. METHODS: A retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experience with AD, their QoL, and their treatments. Messages related to AD discomfort posted between July 1, 2010, and October 23, 2020, were extracted from French-speaking publicly available online forums. Automatic and manual extractions were implemented to create a general corpus and 2 subcorpuses depending on the level of control of the disease. RESULTS: A total of 33,115 messages associated with AD were included in the analysis corpus after extraction and cleaning. These messages were posted by 15,857 separate web users, most of them being women younger than 40 years. Tips to manage AD and everyday hygiene/treatments were among the most discussed topics for controlled AD subcorpus, while baby-related topics and therapeutic failure were among the most discussed topics for insufficiently controlled AD subcorpus. QoL was discussed in both subcorpuses with a higher proportion in the controlled AD subcorpus. Treatments and their perception were also discussed by web users. CONCLUSIONS: More than just emotional or peer support, patients with AD turn to online forums to discuss their health. Our findings show the need for an intersection between social media and health care and the importance of developing new approaches such as the Atopic Dermatitis Control Tool, which is a patient-related disease severity assessment tool focused on patients with AD.

Engagement in leisure and physical activities: analysing the biographical disruptions of a rare chronic disease in France.

Using the biographical disruption literature, this article examines how the experience of illness - in this case, pemphigus - reconfigures engagement in leisure activities, and how these activities are integrated into the biographies of persons with a rare chronic illness. Among the changes imposed by the illness, leisure activities are especially enlightening, as they primarily depend on the body. The article is based on a study of 50 interviews of persons with pemphigus, a rare and chronic dermatological disorder. The ways in which they relate to leisure activities give a new perspective on biographical disruption. The first striking observation is how diverse they are: illness does not level social differences or lived experience, and can even further consolidate commitment to engagements. We identified four types of engagement in leisure activities: disengagement, which reveals biographical disruption; adapted engagement, leading individuals toward low-risk physical activities; engagement in medicalised normalisation; and salutary engagement.

Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic.

This qualitative study conducted in France of "individuals living with a pemphigus" (ILPs; N = 54) highlights the taxing diagnostic trajectory of those suffering from these rare autoimmune diseases. Beyond enduring a diagnostic period that may prove long, during their numerous medical appointments, these individuals internalize the expectations of the medical professionals who are treating them. In some cases, numerous inconclusive medical tests and, at times, a doctor's condescension may push the patient toward a process of renunciation. This article relates the ILPs' critiques of the medical work conducted during the trying diagnostic period.

[Showing skin (or not) on the hot Tunisian sand: an impossible version of Sea, Sex and Sun?]. / Exposer ou non sa peau sur le sable chaud tunisien : une impossible version du Sea, Sex and Sun ?

Beaches are places where human behavior is highly codified. The revealing or on the contrary concealing of one's body responds to complex cultural imperatives. Exposure of skin is never trivial, or harmless from a health point of view, and it always has repercussions in terms of social relations. This article is based on direct observations over several years in a small coastal town in Tunisia. The presentation of the body is described in particular with regard to the wearing of veils and in terms of relationships between men and women. Contact with water or sand and sun exposure play a role in the system of exchange of gestures observed. The strategies they use are presented in terms of the concept of social pollution and according to the beaches that distinguish between the different types of beachgoers.

[Urban culture and physical and sports activities. The "sportification" of parkour and street golf as cultural mediation]. / Cultures urbaines et activités physiques et sportives. La "sportification" du parkour et du street golf comme médiation culturelle.

The article explores the process of "sportification"--i.e., processing physical activity in a sport regulated by a set of rules and standards, legitimized by supervisory institutions--from two originals practices, parkour and urban golf. To study these practices, we crossed the contributions of urban sociology and of the contemporary sociology of sport while respecting the methodological principles of qualitative sociology. A first point concerns the process of"sport" itself, its definition, its various stages, and the role played by communication of stakeholders on public space. The cultural mediation shows us how to institutionalize the movement that represents the "sports" resulted in the same time reconfiguration of physical practices themselves. Recent events illustrate the ongoing reconfiguration, we will detail them. Finally, we show the effects produced by the process on the definition of urban culture and sports: setting sight of activities, enhanced cooperation with the media-cultural, polarization between different types of practical in the case of parkour, around a confrontation between two of the founders.