Nel lavoro di cura rivolto a persone e famiglie interessate da malattie gravi, stati cronici di disagio o disabilità, accade frequentemente di trovarsi di fronte alla produzione spontanea e abbondante di narrazioni riguardanti la vita dell’individuo, o dei famigliari che lo assistono.
Ieri, dando una rapida scorsa ai miei vari profili social, ho accolto con grande piacerel’arrivo su LinkedIn di Digital Narrative Medicine, la prima piattaforma digitale dedicata all’integrazione nella pratica clinica della Medicina Narrativa. Ma che cosa si intende per “Medicina Narrativa”?
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Analisi del sangue e app per intervenire in tempo
Un’ambulanza. Un lettino. E una dottoressa dai capelli rossi e lo sguardo di chi sa ascoltare. Niente flebo, defibrillatori e bombole di ossigeno però: qui le urgenze si curano a colpi di versi letterari. E’ il “Pronto soccorso poetico”, il presidio sanitario per l’anima da duemila pazienti all’anno, ideato da Deborah Alma, scrittrice inglese che a bordo di un’ autolettiga degli anni ’70 acquistata su eBay viaggia da nord a sud della Gran Bretagna prescrivendo poesie contro il mal di vivere. Continua a leggere →
Prendiamo l’ascensore, scendiamo al piano -2 dell’ospedale e lì troviamo il mondo di vetrini dell’anatomo-patologo, tanto centrale nella diagnosi e nel follow up del paziente oncologico, quanto spesso invisibile. Continua a leggere →
A small group of third-year medical students and interdisciplinary faculty sit around a table. The students look weary—stethoscopes slung around their necks, white coats slightly rumpled, pockets overflowing with smartphones, pens, scraps of paper, a half-eaten candy bar. They are not sure what to expect, but they are glad to sit down. Continua a leggere →
Few families are prepared when a baby dies prior to delivery. Here, parents who have navigated this difficult experience shared their insights. continua a leggere
Articolo di Eleni Michailidis su The New York Times
Una corretta informazione, insieme a un buon rapporto fra medico e paziente, importante quanto una vera e propria medicina. Ma l’Italia è arretrata Continua a leggere →
Scrive Eric Topol: “With approximately two billion users worldwide, smartphones are the most rapidly adopted technology in the history of man […] We are about to see a medical revolution with little mobile devices”. Continua a leggere →
The film “Thank You for Playing,” which premièred at this year’s Tribeca Film Festival, follows a young father who is making a video game about his terminally ill child. Joel Green was diagnosed with terminal cancer in 2010, at the age of one. By the time the film’s directors, David Osit and Malika Zouhali-Worrall, first met him, in early 2013, Joel’s young body had been subject to more than three years of surgery and chemotherapy. The tumors had left him partially deaf and blind. At one point, he had to relearn how to walk. Other families might document and express a similar experience through photographs, home videos, written diaries, or poems. But Joel’s father, Ryan Green, is a video-game developer, and he decided to bring narrative order to the devastating chaos of his son’s illness using the medium he knows best.
Video games often provide a form of escape, both for their players and, at times, for their designers. But for Green “That Dragon, Cancer,” as his game is called, served an opposite purpose—as a way to invite others to share his real-life experience. An early demo of the game, released a few months after Green and his friend and development partner Josh Larson began work on it, in November of 2012, held nothing back in its depiction of the family’s plight. In one vignette, you sit, as Green once did, in a hospital room, which is quiet apart from the hum of inscrutable machines and Joel’s haunting screams. The game’s style is impressionistic (there are no features, for instance, on the face of Joel’s avatar), but the effect of a baby’s cries is undiminished in a virtual world. In video games, we have grown used to confronting the problems their designers present and solving them with relative ease, often via a gun’s sights, a shunted block, or a virtual key. In this scene, the problem is inescapable, and the sense of anguish when your attempts to calm Joel fail is grimly authentic. As the young boy bangs his head against the rails of his narrow cot, you hunt in vain for a button that might make it all stop. continua a leggere
Articolo di Simon Parkin su The New Yorker