{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,31]],"date-time":"2026-08-31T19:39:24Z","timestamp":1788205164010,"version":"build-2803163510"},"reference-count":55,"publisher":"Informa UK Limited","issue":"10","content-domain":{"domain":["www.tandfonline.com"],"crossmark-restriction":true},"short-container-title":["Psychology &amp; Health"],"published-print":{"date-parts":[[2019,10,3]]},"DOI":"10.1080\/08870446.2019.1583341","type":"journal-article","created":{"date-parts":[[2019,3,31]],"date-time":"2019-03-31T10:22:01Z","timestamp":1554027721000},"page":"1141-1160","update-policy":"https:\/\/doi.org\/10.1080\/tandf_crossmark_01","source":"Crossref","is-referenced-by-count":10,"title":["Living with Hereditary Haemorrhagic Telangiectasia: stigma, coping with unpredictable symptoms, and self-advocacy"],"prefix":"10.1080","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8749-1639","authenticated-orcid":false,"given":"Adrienne","family":"Sexton","sequence":"first","affiliation":[{"name":"Genomic Medicine, Royal Melbourne Hospital, Parkville, Victoria, Australia;"},{"name":"Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bridget","family":"Gargan","sequence":"additional","affiliation":[{"name":"Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0241-0348","authenticated-orcid":false,"given":"Jessica","family":"Taylor","sequence":"additional","affiliation":[{"name":"Genomic Medicine, Royal Melbourne Hospital, Parkville, Victoria, Australia;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3293-9157","authenticated-orcid":false,"given":"Michael","family":"Bogwitz","sequence":"additional","affiliation":[{"name":"Genomic Medicine, Royal Melbourne Hospital, Parkville, Victoria, Australia;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8535-6003","authenticated-orcid":false,"given":"Ingrid","family":"Winship","sequence":"additional","affiliation":[{"name":"Genomic Medicine, Royal Melbourne Hospital, Parkville, Victoria, Australia;"},{"name":"Department of Medicine, The University of Melbourne, Parkville VIC, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"301","published-online":{"date-parts":[[2019,3,31]]},"reference":[{"key":"CIT0001","volume-title":"The Jossey-Bass social and behavioral science series and the Jossey-Bass health series. Unraveling the mystery of health: How people manage stress and stay well","author":"Antonovsky A","year":"1987"},{"key":"CIT0002","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-016-9944-y"},{"key":"CIT0003","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.40.8.585"},{"key":"CIT0004","doi-asserted-by":"publisher","DOI":"10.3748\/wjg.v17.i44.4839"},{"key":"CIT0005","volume-title":"Qualitative inquiry and research design: Choosing among five approaches","author":"Creswell J.W","year":"2007","edition":"2"},{"key":"CIT0006","doi-asserted-by":"publisher","DOI":"10.1002\/lary.24526"},{"key":"CIT0007","doi-asserted-by":"publisher","DOI":"10.1136\/jech.2003.018085"},{"key":"CIT0008","doi-asserted-by":"publisher","DOI":"10.1023\/A:1023486611891"},{"key":"CIT0009","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.2009.069013"},{"issue":"3","key":"CIT0010","first-page":"164","volume":"32","author":"Fiorella M. L.","year":"2012","journal-title":"Acta Otorhinolaryngologica Italica"},{"key":"CIT0011","doi-asserted-by":"publisher","DOI":"10.1177\/1473325004043383"},{"key":"CIT0012","doi-asserted-by":"publisher","DOI":"10.1177\/160940690200100102"},{"key":"CIT0014","first-page":"191","volume":"5","author":"Garg N.","year":"2014","journal-title":"Journal of Blood Medicine"},{"key":"CIT0015","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-016-0033-z"},{"key":"CIT0016","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35309"},{"key":"CIT0017","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2012.690500"},{"issue":"40","key":"CIT0018","first-page":"33","volume":"146","author":"Geisthoff U. W.","year":"2004","journal-title":"MMW-Fortschritte der Medizin"},{"key":"CIT0019","doi-asserted-by":"publisher","DOI":"10.1016\/j.otohns.2006.12.019"},{"key":"CIT0020","doi-asserted-by":"publisher","DOI":"10.1023\/A:1015819615983"},{"key":"CIT0021","doi-asserted-by":"publisher","DOI":"10.1163\/156916297X00103"},{"key":"CIT0022","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-12-383834-6.00055-0"},{"key":"CIT0023","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199510053331407"},{"key":"CIT0024","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-015-0254-0"},{"key":"CIT0025","doi-asserted-by":"publisher","DOI":"10.1080\/0142159X.2017.1245854"},{"key":"CIT0026","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(94)90396-4"},{"key":"CIT0027","first-page":"224","volume-title":"Five ways of doing qualitative analysis","author":"Josselson R","year":"2011"},{"key":"CIT0028","doi-asserted-by":"publisher","DOI":"10.1007\/s00405-004-0911-0"},{"key":"CIT0029","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2014.44"},{"key":"CIT0030","doi-asserted-by":"publisher","DOI":"10.2165\/00128071-200506060-00005"},{"key":"CIT0031","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2796.1999.00398.x"},{"key":"CIT0032","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.37987"},{"key":"CIT0033","volume-title":"South Melbourne","author":"Liamputtong P","year":"2009","edition":"3"},{"key":"CIT0034","doi-asserted-by":"publisher","DOI":"10.4193\/Rhino10.090"},{"key":"CIT0035","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzu071"},{"key":"CIT0036","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-007-9113-4"},{"key":"CIT0037","doi-asserted-by":"publisher","DOI":"10.1002\/alr.21374"},{"key":"CIT0038","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-012-9583-x"},{"key":"CIT0039","doi-asserted-by":"publisher","DOI":"10.1097\/DCR.0b013e31825aad32"},{"key":"CIT0040","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzi016"},{"key":"CIT0041","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-004-7865-y"},{"key":"CIT0042","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-7-33"},{"key":"CIT0043","doi-asserted-by":"publisher","DOI":"10.1177\/1077800406297670"},{"key":"CIT0044","doi-asserted-by":"publisher","DOI":"10.2500\/ajra.2012.26.3809"},{"key":"CIT0045","volume-title":"Narrative methods for the human sciences","author":"Riessman C. K","year":"2007"},{"key":"CIT0046","doi-asserted-by":"publisher","DOI":"10.1111\/imj.12457"},{"key":"CIT0047","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.1991.tb00662.x"},{"key":"CIT0048","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2008.01774.x"},{"key":"CIT0049","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-8628(20000306)91:1<66::AID-AJMG12>3.0.CO;2-P"},{"key":"CIT0050","doi-asserted-by":"publisher","DOI":"10.1002\/lary.23893"},{"key":"CIT0051","doi-asserted-by":"publisher","DOI":"10.1002\/lary.20159"},{"key":"CIT0052","doi-asserted-by":"publisher","DOI":"10.2500\/ar.2014.5.0091"},{"key":"CIT0053","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2133.2002.04899.x"},{"key":"CIT0054","doi-asserted-by":"publisher","DOI":"10.3402\/qhw.v6i2.5882"},{"key":"CIT0055","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.10002"},{"key":"CIT0056","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajhg.2013.07.004"}],"container-title":["Psychology &amp; Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.tandfonline.com\/doi\/pdf\/10.1080\/08870446.2019.1583341","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,9,19]],"date-time":"2019-09-19T07:21:30Z","timestamp":1568877690000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.tandfonline.com\/doi\/full\/10.1080\/08870446.2019.1583341"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,3,31]]},"references-count":55,"journal-issue":{"issue":"10","published-online":{"date-parts":[[2019,3,23]]},"published-print":{"date-parts":[[2019,10,3]]}},"alternative-id":["10.1080\/08870446.2019.1583341"],"URL":"https:\/\/doi.org\/10.1080\/08870446.2019.1583341","relation":{},"ISSN":["0887-0446","1476-8321"],"issn-type":[{"value":"0887-0446","type":"print"},{"value":"1476-8321","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,3,31]]},"assertion":[{"value":"The publishing and review policy for this title is described in its Aims & Scope.","order":1,"name":"peerreview_statement","label":"Peer Review Statement"},{"value":"http:\/\/www.tandfonline.com\/action\/journalInformation?show=aimsScope&journalCode=gpsh20","URL":"http:\/\/www.tandfonline.com\/action\/journalInformation?show=aimsScope&journalCode=gpsh20","order":2,"name":"aims_and_scope_url","label":"Aim & Scope"},{"value":"2018-04-24","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-01-02","order":1,"name":"revised","label":"Revised","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-02-06","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2019-03-31","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}