{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,4,24]],"date-time":"2025-04-24T05:10:20Z","timestamp":1745471420130,"version":"3.40.4"},"reference-count":0,"publisher":"S. Karger AG","issue":"4","license":[{"start":{"date-parts":[[1999,1,1]],"date-time":"1999-01-01T00:00:00Z","timestamp":915148800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"},{"start":{"date-parts":[[1999,1,1]],"date-time":"1999-01-01T00:00:00Z","timestamp":915148800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.karger.com\/Services\/SiteLicenses"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Public Health Genomics"],"published-print":{"date-parts":[[1999]]},"abstract":"<jats:p>&lt;i&gt;Objectives:&lt;\/i&gt; In the context of our national program of predictive testing for Machado-Joseph disease (MJD), we have studied in a small rural community (1) discourses about the illness by individuals at risk and patients, and (2) how individuals at risk and patients plan to cope with the familial illness. &lt;i&gt;Methods:&lt;\/i&gt; We used qualitative methods, beginning with a group interview of individuals at risk, and followed by in-depth interviews (about 1 hour long) of at-risk and affected individuals, in their homes. The latter interviews were subjected to a content analysis. &lt;i&gt;Results:&lt;\/i&gt; The coexistence of two contradictory discourses about MJD (a scientific and a folk one) was found consistently among all individuals. The main metaphor was that of the \u2018drunkard\u2019. Knowledge about a precise diagnosis of their disease produced relief and hope, because it provided evidence that affected individuals were not drunkards. &lt;i&gt;Conclusions:&lt;\/i&gt; The understanding of beliefs about the disease and its social representation is essential in planning effective genetic and psychological counseling.<\/jats:p>","DOI":"10.1159\/000016211","type":"journal-article","created":{"date-parts":[[2003,4,15]],"date-time":"2003-04-15T17:25:18Z","timestamp":1050427518000},"page":"190-195","source":"Crossref","is-referenced-by-count":6,"title":["Living with Machado-Joseph Disease in a Small Rural Community of the Tagus Valley"],"prefix":"10.1159","volume":"2","author":[{"given":"Constan\u00e7a","family":"Pa\u00fal","sequence":"first","affiliation":[]},{"given":"Ignacio","family":"Mart\u00edn","sequence":"additional","affiliation":[]},{"given":"Maria","family":"do Ros\u00e1rio Silva","sequence":"additional","affiliation":[]},{"given":"M\u00e1rio","family":"Silva","sequence":"additional","affiliation":[]},{"given":"Paula","family":"Coutinho","sequence":"additional","affiliation":[]},{"given":"Jorge","family":"Sequeiros","sequence":"additional","affiliation":[]}],"member":"127","published-online":{"date-parts":[[2000,6,13]]},"container-title":["Public Health Genomics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/16211","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.karger.com\/Article\/Pdf\/16211","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,24]],"date-time":"2025-04-24T04:41:41Z","timestamp":1745469701000},"score":1,"resource":{"primary":{"URL":"https:\/\/karger.com\/article\/doi\/10.1159\/000016211"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[1999]]},"references-count":0,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2000,6,1]]}},"URL":"https:\/\/doi.org\/10.1159\/000016211","archive":["Portico"],"relation":{},"ISSN":["1662-4246","1662-8063"],"issn-type":[{"type":"print","value":"1662-4246"},{"type":"electronic","value":"1662-8063"}],"subject":[],"published":{"date-parts":[[1999]]}}}