{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T20:38:40Z","timestamp":1777495120584,"version":"3.51.4"},"reference-count":27,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2015,8,19]],"date-time":"2015-08-19T00:00:00Z","timestamp":1439942400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Chronic Illness"],"published-print":{"date-parts":[[2016,3]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To investigate how patients with ankylosing spondylitis and their relatives in multiplex case families understand concepts of familial aggregation, heredity and risk perceptions, and its impact on decision-making.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This is a multimethod clinical investigation using field research style in 34 individuals from 10 families with \u22652 members with ankylosing spondylitis covering a wide spectrum of disease severity, educational level, and economical status. The narratives of patients and their relatives were obtained using clinical information, unstructured observation, and personal interviews, which were then transcribed verbatim, coded, and analyzed by three investigators. The interpretation of the textual data was based on two analysis styles, immersion\/crystallization and interpretative grounded theory.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We identified four broad interrelated interpretive units in patient and relatives narratives: (1) familial interpretation of the disease, (2) genetic risk, (3) decision-making based on risk, and (4) patient-family\/physician discourse contradiction on the meaning of heredity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Patient's and their relatives interpretation of familial aggregation, HLAB27, heredity, and risk perception in relation with ankylosing spondylitis involves four broad interpretive units spanning from clinical symptoms to heredity and decisions made accordingly. Their thoughts and consequent decisions are often in contradiction with the medical knowledge on the role of genetic factors in ankylosing spondylitis.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/1742395315601413","type":"journal-article","created":{"date-parts":[[2015,8,19]],"date-time":"2015-08-19T19:58:13Z","timestamp":1440014293000},"page":"58-70","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["If three of my brothers have ankylosing spondylitis, why does the doctor say it is not necessarily hereditary? The meaning of risk in multiplex case families with ankylosing spondylitis"],"prefix":"10.1177","volume":"12","author":[{"given":"Ingris","family":"Pel\u00e1ez-Ballestas","sequence":"first","affiliation":[{"name":"Rheumatology Unit, Hospital General de M\u00e9xico, Mexico City, Mexico"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martha","family":"Romero-Mendoza","sequence":"additional","affiliation":[{"name":"Epidemiological and Psychosocial Research Division, Instituto Nacional de Psiquiatr\u00eda Ramon de la Fuente Mu\u00f1iz, M\u00e9xico City, M\u00e9xico"},{"name":"Universidad Nacional Aut\u00f3noma de Mexico, Faculty of Medicine, Mexico City, Mexico"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rub\u00e9n","family":"Burgos-Vargas","sequence":"additional","affiliation":[{"name":"Rheumatology Unit, Hospital General de M\u00e9xico, Mexico City, Mexico"},{"name":"Universidad Nacional Aut\u00f3noma de Mexico, Faculty of Medicine, Mexico City, Mexico"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2015,8,19]]},"reference":[{"key":"bibr1-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-323-03104-2.50007-7"},{"key":"bibr2-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1002\/art.1780270301"},{"key":"bibr3-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1038\/ng.513"},{"key":"bibr4-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1097\/BOR.0b013e3283364483"},{"key":"bibr5-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1007\/s11926-009-0049-6"},{"key":"bibr6-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2003.011247"},{"key":"bibr7-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2009.108233"},{"key":"bibr8-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2010.133645"},{"key":"bibr9-1742395315601413","first-page":"420","volume":"62","author":"Guti\u00e9rrez-Su\u00e1rez R","year":"2004","journal-title":"Ann Rheum Dis"},{"key":"bibr10-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2003.11.025"},{"key":"bibr11-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1177\/1049732306297882"},{"key":"bibr12-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1080\/01459740701619848"},{"key":"bibr13-1742395315601413","doi-asserted-by":"publisher","DOI":"10.9783\/9780812200607"},{"key":"bibr14-1742395315601413","first-page":"52","volume":"10","author":"Finkler K","year":"2003","journal-title":"Antrhopol Med"},{"key":"bibr15-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1086\/432452"},{"key":"bibr16-1742395315601413","volume-title":"Risk and blame: essay in cultural theory","author":"Douglas M","year":"1994"},{"key":"bibr17-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(02)09421-7"},{"key":"bibr18-1742395315601413","volume-title":"Antropolog\u00eda hist\u00f3rica de la familia","author":"Segalen M","year":"2004"},{"key":"bibr19-1742395315601413","first-page":"3","volume-title":"Doing qualitative research","author":"Miller WL","year":"1999"},{"key":"bibr20-1742395315601413","volume-title":"The discovery of grounded theory. Strategy for qualitative research","author":"Glaser BG","year":"1967"},{"key":"bibr21-1742395315601413","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(90)90256-R"},{"key":"bibr22-1742395315601413","volume-title":"Etnography. 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