1,721,065 research outputs found
“Communication in rare diseases: A literature review for an empirical project”
No full textAccording to the WHO a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing. The 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. The 50% of rare diseases touch children.
One of the essential conditions for improving diagnosis and medical care in the field of rare diseases is the ability to provide and to disseminate accurate information as required by care givers and patients. More specifically rare disease patients experience is hindered in accessing high quality healthcare. These obstacles include but are not limited to: (i) lack of scientific knowledge of their disease, (ii) lack of access to correct diagnosis, (iii) delays in diagnosis, (iv) lack of appropriate multidisciplinary healthcare, (v) lack of quality information and support at the time of diagnosis, (vi) undue social consequences, (vii) inequities and difficulties in access to treatment, rehabilitation and care, (viii) dissatisfaction with and loss of confidence in medical and social services, (ix) denied treatment by health professionals and (x) lack of availability of orphan drugs (Kole, Faurisson 2010).
The project aims at analyzing the role of communication in rare diseases along two main pillars: a)information; b) relationship between care gives /patients (or family members)
Le corps entre culture e nature
No full textLa relation entre nature et culture est sans doute un des sujets les plus intéressants, mais aussi un des plus complexes, dans l'analyse des rapports humains. Et trés souvent le corps humain devient l'instrument privilégié de ces décors (Le Breton 1992). On assite aussi à une bataille continue entre corps et pouvoir.
Sans doute, toute société, toute civilisation travaille-t-elle le corps de ses membres pour les sculpter à son image, à ses valeurs, à ses fins. Si toute société avance un "idéaltype" du corps, miror dans lequel chacun essaie de se reconnaitre, déplorant toujours de ne pas lui ressembler suffisamment, notre société se caractérise par l'idéal d'un corps aseptisé, irréel, inaccessible.
Chaque société connait de tels rituels par lesquels le corps est marqué. comme si un corps véritablement human devait etre travaillé pour accéder à son humanité (Huisman e Ribes 1992).
Le caractéristique dominante de notre époque est la croyance fondamentale en la mobilité de l'individu, d'où le souci de la compétition. Et ancore, toute la vie de l'homme moderne est construite comme une lutte contre ce qu'on nomme le progrés technique, il refuse la veillesse, la vulnérabilité, la fatalité, la mort (Baudrillard 1970. En ces termes on explique aussi l'étique de l'esthétique et le néo-tribalisme dont parle MaffesoliThe relationship between nature and culture is without doubt one of the most interesting topics, but also more complex, in the analysis of human relationships. And very often the human body becomes the main instrument of these sets (Le Breton 1992). Also assity to an ongoing battle between body and pouvoir.Sans doubt any company, civilization she works the body of its members to carve its image, its values, its purposes. If any company advances a "" ideal type "" body, miror in which each tries to recognize, always regretting not like him enough, our society is characterized by the ideal of a sanitized body, unreal, inaccessible.Chaque company knows such rituals by which the body is marked. as if a human body really should be working to reach his humanity (Huisman e Ribes 1992). The dominant characteristic of our time is the fundamental belief in individual mobility, hence the concern for competition. And ancore, life of modern man is built like a struggle against what is called technical progress, it denies the veillesse, vulnerability, fate, death (Baudrillard 1970. These terms also explains 'ethics of aesthetics and neo-tribalism which speaks Maffesol
PREMIO NAZIONALE DI DIVULGAZIONE SCIENTIFICA
No full textPremio per opere dedicate alla divulgazione scientific
La sanità medi@ta
No full textChe cosa sta accadendo alla sanità italiana nell’era della disintermediazione e dell’eclissi della competenza? Il volume che il lettore ha fra le mani risponde a questa ed altre domande, descrivendo una traiettoria analitica che, grazie alle chiavi interpretative delle scienze sociali in generale e della sociologia in particolare, fotografa il presente e delinea alcuni possibili scenari futuri.
Nel libro il sistema sanità, dopo essere stato contestualizzato all’interno del più ampio paradigma della cultura della salute, viene posto in relazione alle peculiarità della società postmoderna. Il risultato è quello di un esame rigoroso delle diverse forme di mediazione: dei cittadini/pazienti, delle istituzioni e delle organizzazioni, dei tanti professionisti sanitari e dei media mainstream e dei new media.
Tutti i soggetti che concorrono a definire il significato stesso di “sanità” e di “salute” sono in questo volume presi in esame in una logica sinergica e di sistema: quella che, a giudizio degli autori, serve per evitare che la sanità diventi una forma di consumo commerciale più che di senso e per consentire che essa continui ad essere una risposta ai bisogni sociali degli utenti. La visione olistica e non molecolare proposta in queste pagine colloca la sanità (e con essa la salute) nell’alveo degli strumenti utili a generare valore comunitario in un momento in cui verità e verosimiglianza si assomigliano e realtà e percezione si sovrappongono fino ad annullarsi
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