{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,9]],"date-time":"2026-01-09T18:13:33Z","timestamp":1767982413295,"version":"3.49.0"},"reference-count":37,"publisher":"CAIRN","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2022,2,10]]},"abstract":"<jats:p>Introduction\u00a0: la dr\u00e9panocytose, la premi\u00e8re maladie g\u00e9n\u00e9tique en France et dans le monde, est pourtant m\u00e9connue des soignants et du grand public. Contexte\u00a0: peu d\u2019\u00e9tudes portent sur le quotidien des adultes atteints de dr\u00e9panocytose. Objectif\u00a0: cette recherche vise \u00e0 d\u00e9crire la gestion des crises vaso-occlusives et des sympt\u00f4mes associ\u00e9s par les personnes \u00e2g\u00e9es de plus de trente ans. M\u00e9thode\u00a0: une \u00e9tude qualitative pilote a \u00e9t\u00e9 men\u00e9e aupr\u00e8s de huit personnes homozygotes SS vivant en Ile-de-France. Les entretiens semi-directifs conduits au domicile des patients ont fait l\u2019objet d\u2019une analyse th\u00e9matique. R\u00e9sultats\u00a0: la douleur et la souffrance sont les principales plaintes des patients, contre lesquelles ils d\u00e9veloppent un ensemble de strat\u00e9gies comme des mesures pr\u00e9ventives, des moyens m\u00e9dicamenteux et non m\u00e9dicamenteux. Discussion\u00a0: l\u2019approche inductive a mis en lumi\u00e8re le travail quotidien qu\u2019effectuent les patients pour la gestion des sympt\u00f4mes. Conclusion\u00a0: cette recherche sugg\u00e8re de nouvelles pistes de r\u00e9flexion pour la pratique, comme l\u2019accompagnement dans l\u2019am\u00e9lioration du sentiment de contr\u00f4le de la maladie et une activit\u00e9 physique adapt\u00e9e.<\/jats:p>","DOI":"10.3917\/rsi.147.0082","type":"journal-article","created":{"date-parts":[[2022,2,22]],"date-time":"2022-02-22T17:54:51Z","timestamp":1645552491000},"page":"82-91","source":"Crossref","is-referenced-by-count":1,"title":["Gestion des crises vaso-occlusives par les patients atteints de dr\u00e9panocytose"],"prefix":"10.3917","volume":"N\u00b0 147","author":[{"given":"Diane","family":"Bargain","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Teixeira","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"2273","reference":[{"key":"rb1","doi-asserted-by":"publisher","first-page":"61-66","DOI":"10.1016\/S1773-035X(16)30129-0","article-title":"La dr\u00e9panocytose en France","volume":"2016","author":"Mattioni Sarah","year":"2016","journal-title":"Revue Francophone des Laboratoires","ISSN":"https:\/\/id.crossref.org\/issn\/1773-035X","issn-type":"print"},{"key":"rb2","doi-asserted-by":"publisher","first-page":"965-967","DOI":"10.1051\/medsci\/20132911012","article-title":"Distribution g\u00e9ographique de la dr\u00e9panocytose en 2010","volume":"29","author":"Piel Fr\u00e9d\u00e9ric B.","year":"2013","journal-title":"m\u00e9decine\/sciences","ISSN":"https:\/\/id.crossref.org\/issn\/0767-0974","issn-type":"print"},{"key":"rb3","doi-asserted-by":"publisher","first-page":"482-490","DOI":"10.1051\/medsci\/2021056","article-title":"D\u00e9pistage n\u00e9onatal de la dr\u00e9panocytose en France","volume":"37","author":"Brousse Valentine","year":"2021","journal-title":"m\u00e9decine\/sciences","ISSN":"https:\/\/id.crossref.org\/issn\/0767-0974","issn-type":"print"},{"key":"rb4","unstructured":"4 Lionnet F, Girot R. 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