{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T23:58:31Z","timestamp":1792454311740,"version":"4.5.0"},"reference-count":14,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2021,5,5]],"date-time":"2021-05-05T00:00:00Z","timestamp":1620172800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Paediatrics Child Health"],"published-print":{"date-parts":[[2021,10]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>Thalassaemia, the commonest genetic blood disorder in Papua New Guinea (PNG) presents daunting challenges for the affected children, their parents and families, and the health system. We aimed to describe the quality of life of affected children and adolescents and the experience of and difficulties faced by their parents in the setting of a tertiary referral hospital in PNG.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A mixed\u2010methods longitudinal study involving baseline questionnaire, then serial interviews with parents, children and adolescents living with \u03b2\u2010thalassaemia attending Port Moresby General Hospital.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010one patients and their families were interviewed over a 6\u2010month period. Most families originated outside the National Capital District and had migrated to be near the Port Moresby General Hospital and its blood bank services. Thirteen patients had at least one affected sibling and four families had experienced the death of at least one other affected child. No child was receiving chelating agents, and most had clinical evidence of iron overload. There were important impacts of thalassemia on quality of life, including very poor school attendance and some aspects of children's self\u2010perception. Families faced significant burdens and made genuine sacrifices to care for their children.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Regular blood transfusions increase the life\u2010span of children with thalassaemia but there is a need to achieve a hyper\u2010transfusion regimen coupled with chelation therapy. As for all chronic illness, a focused and holistic approach is needed to improve the quality of life for affected children and their families.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jpc.15538","type":"journal-article","created":{"date-parts":[[2021,5,5]],"date-time":"2021-05-05T07:52:14Z","timestamp":1620201134000},"page":"1589-1593","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Living with thalassaemia in Papua New Guinea, the experience of children, adolescents and their families"],"prefix":"10.1111","volume":"57","author":[{"given":"Violet Regina","family":"Nagiria","sequence":"first","affiliation":[{"name":"Paediatric Department Port Moresby General Hospital  Port Moresby NCD Papua New Guinea"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John D","family":"Vince","sequence":"additional","affiliation":[{"name":"School of Medicine and Health Sciences University of Papua New Guinea  Port Moresby Papua New Guinea"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4637-1416","authenticated-orcid":false,"given":"Trevor","family":"Duke","sequence":"additional","affiliation":[{"name":"School of Medicine and Health Sciences University of Papua New Guinea  Port Moresby Papua New Guinea"},{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,5,5]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"crossref","unstructured":"HayD WeatherallDJ.Thalassaemias. ELS.1\u20106.","DOI":"10.1002\/9780470015902.a0005536.pub2"},{"key":"e_1_2_8_3_1","first-page":"704","article-title":"Inherited haemoglobin disorders: An increasing global health problem","volume":"79","author":"Weatherall D","year":"2001","journal-title":"Bull. World Health Organ."},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/321744a0"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/ejh.13512"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.braindev.2005.03.006"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2019-317217"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2014-308112"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e228"},{"key":"e_1_2_8_10_1","unstructured":"United Nations Development Programme.About Papua New Guinea. The Programme;2019. Available from:https:\/\/www.pg.undp.org\/content\/papua_new_guinea\/en\/home\/countryinfo.html"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1744-6155.2007.00085.x"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/tmi.12774"},{"key":"e_1_2_8_13_1","volume-title":"Innovative Care for Chronic Conditions: Building Blocks for Action: Global Report","author":"Pruitt S","year":"2002"},{"key":"e_1_2_8_14_1","unstructured":"World Health Organization.Redesigning Child and Adolescent Health Programmes. The Organization; 2019. Available from:https:\/\/www.who.int\/docs\/default-source\/mca-documents\/stage\/child-health-redesign-report.pdf?sfvrsn=7f117c10_2"},{"key":"e_1_2_8_15_1","unstructured":"Federation Thalassaemia International. Italy;Available from:https:\/\/thalassaemia.org.cy\/2020[Accessed 13 March 2021]."}],"container-title":["Journal of Paediatrics and Child Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jpc.15538","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jpc.15538","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jpc.15538","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,21]],"date-time":"2023-08-21T17:26:49Z","timestamp":1692638809000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jpc.15538"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,5,5]]},"references-count":14,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2021,10]]}},"alternative-id":["10.1111\/jpc.15538"],"URL":"https:\/\/doi.org\/10.1111\/jpc.15538","archive":["Portico"],"relation":{},"ISSN":["1034-4810","1440-1754"],"issn-type":[{"value":"1034-4810","type":"print"},{"value":"1440-1754","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,5,5]]},"assertion":[{"value":"2021-02-22","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-04-19","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-05-05","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}