{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2024,5,4]],"date-time":"2024-05-04T00:14:55Z","timestamp":1714781695441},"reference-count":41,"publisher":"FapUNIFESP (SciELO)","issue":"2","license":[{"start":{"date-parts":[[2018,2,1]],"date-time":"2018-02-01T00:00:00Z","timestamp":1517443200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2018,2,1]],"date-time":"2018-02-01T00:00:00Z","timestamp":1517443200000},"content-version":"am","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2018,2,1]],"date-time":"2018-02-01T00:00:00Z","timestamp":1517443200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Ci\u00eanc. sa\u00fade coletiva"],"abstract":"<jats:p>Resumo O artigo analisa a experi\u00eancia de pessoas que vivem com a S\u00edndrome de Berardinelli-Seip no Nordeste brasileiro. Este estudo qualitativo foi desenvolvido com onze interlocutores, sendo nove pessoas vivendo com a s\u00edndrome e duas m\u00e3es. Para coligir as informa\u00e7\u00f5es, utilizaram-se observa\u00e7\u00e3o participante, caracteriza\u00e7\u00e3o social e entrevistas semiestruturadas. Os dados foram analisados por meio da t\u00e9cnica de codifica\u00e7\u00e3o tem\u00e1tica. Emergiram duas categorias: (1) \u2018o segredo \u00e9 fechar a boca\u2019: gerenciamento da alimenta\u00e7\u00e3o na vida cotidiana; e (2) \u2018ah, \u00e9 uma travesti?\u2019 Corpo, g\u00eanero e masculiniza\u00e7\u00e3o. Concluiu-se que na experi\u00eancia dos interlocutores seus agenciamentos e criatividade se traduziram em estrat\u00e9gias para gerenciamento da alimenta\u00e7\u00e3o que integravam gostos, valores, h\u00e1bitos, prescri\u00e7\u00f5es biom\u00e9dicas e prazeres envolvidos em situa\u00e7\u00f5es de comensalidade. No que tange \u00e0 corporeidade, evidenciou-se que as representa\u00e7\u00f5es e as experi\u00eancias com o corpo apresentam desigualdades de g\u00eanero, na medida em que a mulher passa a ser alvo privilegiado de estigmas, preconceitos e discrimina\u00e7\u00e3o na vida adulta.<\/jats:p>","DOI":"10.1590\/1413-81232018232.16802017","type":"journal-article","created":{"date-parts":[[2018,2,3]],"date-time":"2018-02-03T22:10:08Z","timestamp":1517695808000},"page":"389-398","source":"Crossref","is-referenced-by-count":0,"title":["Experi\u00eancia de pessoas que vivem com a S\u00edndrome de Berardinelli-Seip no Nordeste brasileiro"],"prefix":"10.1590","volume":"23","author":[{"given":"\u00c9verson de Brito","family":"Damasceno","sequence":"first","affiliation":[{"name":"Universidade Federal do Rio Grande do Norte,  Brasil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jakson Gomes de","family":"Figueiredo","sequence":"additional","affiliation":[{"name":"Universidade Federal do Rio Grande do Norte,  Brasil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jean Marcel Bezerra","family":"Fran\u00e7a","sequence":"additional","affiliation":[{"name":"Universidade Federal do Rio Grande do Norte,  Brasil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J\u00falio Cesar Duarte","family":"Veras","sequence":"additional","affiliation":[{"name":"Universidade Federal do Rio Grande do Norte,  Brasil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Raul Elton Ara\u00fajo","family":"Borges","sequence":"additional","affiliation":[{"name":"Universidade Federal do Rio Grande do Norte,  Brasil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucas Pereira de","family":"Melo","sequence":"additional","affiliation":[{"name":"Universidade Federal do Rio Grande do Norte,  Brasil"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"530","published-online":{"date-parts":[[2018,2]]},"reference":[{"key":"ref1","series-title":"Olhares socioantropol\u00f3gicos sobre os adoecidos cr\u00f4nicos","author":"Canesqui AM","year":"2007"},{"key":"ref2","series-title":"Adoecimentos e sofrimentos de longa dura\u00e7\u00e3o","author":"Canesqui AM","year":"2013"},{"key":"ref3","first-page":"13","article-title":"Uma dor que n\u00e3o passa: aportes te\u00f3rico-metodol\u00f3gicos de uma Antropologia das doen\u00e7as compridas","volume":"42","author":"Fleischer S","year":"2015","journal-title":"Pol\u00edt Trab"},{"issue":"6","key":"ref4","doi-asserted-by":"crossref","first-page":"906","DOI":"10.1016\/j.jval.2015.05.008","article-title":"International Society for Pharmacoeconomics and Outcomes Research Rare Disease Special Interest Group. 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