{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T14:37:59Z","timestamp":1783953479245,"version":"3.55.0"},"update-to":[{"DOI":"10.1371\/journal.pntd.0012038","type":"new_version","label":"New version","source":"publisher","updated":{"date-parts":[[2024,9,12]],"date-time":"2024-09-12T00:00:00Z","timestamp":1726099200000}}],"reference-count":36,"publisher":"Public Library of Science (PLoS)","issue":"8","license":[{"start":{"date-parts":[[2024,8,30]],"date-time":"2024-08-30T00:00:00Z","timestamp":1724976000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100014555","name":"Murdoch Children's Research Institute","doi-asserted-by":"publisher","award":["Early Career Award (MCRIECA2022)"],"award-info":[{"award-number":["Early Career Award (MCRIECA2022)"]}],"id":[{"id":"10.13039\/100014555","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["2009798"],"award-info":[{"award-number":["2009798"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosntds.org"],"crossmark-restriction":false},"short-container-title":["PLoS Negl Trop Dis"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>In Victoria, Australia, children with Pacific Islander (\u2018Pacific\u2019) ethnicities are overrepresented in acute rheumatic fever (ARF) and rheumatic heart disease (RHD). In June 2023, ARF and RHD became notifiable in Victoria. To inform public health and clinical practice, we described young Pacific patients\u2019 and their caregivers\u2019 understandings and experiences of ARF\/RHD, and identified possible ways to improve the delivery of clinical care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We established a project reference group including local Pacific people to guide this research. Pacific patients who attended an ARF\/RHD clinic at The Royal Children\u2019s Hospital, Melbourne, were invited to participate, as were their caregivers. A Samoan researcher conducted qualitative \u2018talanoa\u2019 (conversational) interviews with patients and caregivers. A second researcher conducted semi-structured interviews with treating clinicians and other stakeholders. Interview transcripts underwent thematic analysis guided by the Tuilaepa Youth Mentoring Services Pacific Youth Wellbeing Framework.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We interviewed 27 participants. This included nine patients and nine caregivers, all of whom were Samoan. These 18 participants expressed a desire to learn more about ARF\/RHD and connect with other affected people. While some shared their experiences of having well-liked and trusted healthcare providers, patients often struggled to have two-way clinical conversations. The need to support clinicians working with high-risk populations to improve their awareness of ARF was identified. Receiving treatment on time was a top priority for affected families, despite injection pain, inconvenience and financial costs. The need to support continuity of care for young adult patients was raised by participants.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec004\">\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Pacific people living with ARF\/RHD and their families require additional support to receive high quality management in Victoria. Introducing a patient register and a specialist RHD nurse would enhance access to treatment, as would removing cost barriers, improving clinical awareness of ARF\/RHD and creating Victoria-specific patient resources.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pntd.0012038","type":"journal-article","created":{"date-parts":[[2024,8,30]],"date-time":"2024-08-30T15:35:41Z","timestamp":1725032141000},"page":"e0012038","update-policy":"https:\/\/doi.org\/10.1371\/journal.pntd.corrections_policy","source":"Crossref","is-referenced-by-count":2,"title":["Living with rheumatic fever and rheumatic heart disease in Victoria, Australia: A qualitative study"],"prefix":"10.1371","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5548-7512","authenticated-orcid":true,"given":"Jane","family":"Oliver","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Loudeen","family":"Fualautoalasi-Lam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angeline","family":"Ferdinand","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ramona","family":"Tiatia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bryn","family":"Jones","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Engelman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine B.","family":"Gibney","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew C.","family":"Steer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2024,8,30]]},"reference":[{"issue":"11","key":"pntd.0012038.ref001","doi-asserted-by":"crossref","first-page":"685","DOI":"10.1016\/S1473-3099(05)70267-X","article-title":"The global burden of group A streptococcal diseases","volume":"5","author":"JR Carapetis","year":"2005","journal-title":"The Lancet Infectious Diseases"},{"issue":"8","key":"pntd.0012038.ref002","doi-asserted-by":"crossref","first-page":"713","DOI":"10.1056\/NEJMoa1603693","article-title":"Global, regional, and national burden of rheumatic heart disease, 1990\u20132015.","volume":"377","author":"DA Watkins","year":"2017","journal-title":"New England Journal of Medicine"},{"issue":"6","key":"pntd.0012038.ref003","doi-asserted-by":"crossref","first-page":"1155","DOI":"10.1161\/01.CIR.72.6.1155","article-title":"The virtual disappearance of rheumatic fever in the United States: lessons in the rise and fall of disease. 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