{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T15:17:48Z","timestamp":1791472668761,"version":"4.3.4"},"reference-count":39,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,11,20]],"date-time":"2023-11-20T00:00:00Z","timestamp":1700438400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100012503","name":"Royal Hobart Hospital Research Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100012503","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Psycho-Oncology"],"published-print":{"date-parts":[[2024,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Multiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Exploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face\u2010to\u2010face in 2022. Thematic analysis was used.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Ten groups were held with 48 participants (<jats:italic>n<\/jats:italic>\u00a0=\u00a023 with MM, <jats:italic>n<\/jats:italic>\u00a0=\u00a09 with MDS, <jats:italic>n<\/jats:italic>\u00a0=\u00a016 carers). Key themes arising from focus groups with people living with MM\/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM\/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Future work should consider what supports are required for patients acting as carers, and carer burden should not be assumed.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pon.6245","type":"journal-article","created":{"date-parts":[[2023,11,21]],"date-time":"2023-11-21T10:07:41Z","timestamp":1700561261000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome"],"prefix":"10.1002","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8025-5841","authenticated-orcid":false,"given":"Jessica","family":"Roydhouse","sequence":"first","affiliation":[{"name":"Menzies Institute for Medical Research University of Tasmania  Hobart Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah","family":"Thompson","sequence":"additional","affiliation":[{"name":"Royal Hobart Hospital  Hobart Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Nicholson","sequence":"additional","affiliation":[{"name":"Royal Hobart Hospital  Hobart Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosemary","family":"Harrup","sequence":"additional","affiliation":[{"name":"Royal Hobart Hospital  Hobart Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Campbell","sequence":"additional","affiliation":[{"name":"Menzies Institute for Medical Research University of Tasmania  Hobart Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kim","family":"Jose","sequence":"additional","affiliation":[{"name":"Menzies Institute for Medical Research University of Tasmania  Hobart Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,11,20]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41375\u2010021\u201001265\u20107"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.mayocp.2015.11.007"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12885\u2010016\u20102410\u20102"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41375\u2010018\u20100089\u2010x"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520\u2010009\u20100793\u20101"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2022007127"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12885\u2010022\u201010458\u2010x"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen\u20102021\u2010050816"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.5535"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/ecc.12951"},{"issue":"2","key":"e_1_2_10_12_1","first-page":"E64","article-title":"Patients' experiences with multiple myeloma: a meta\u2010aggregation of qualitative studies","volume":"44","author":"Hauksdottir B","year":"2017","journal-title":"Oncol Nurs Forum"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.soncn.2022.151338"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.5694\/mja13.c10055"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthplace.2018.08.010"},{"key":"e_1_2_10_16_1","unstructured":"Australian Bureau of Statistics (ABS).The Australian statistical geography standard. Accessed September 18 2023.http:\/\/www.abs.gov.au\/websitedbs\/D3310114.nsf\/home\/remoteness+structure"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.7000.299"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781849209175"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2020.29.2.103"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.7748\/ns.25.28.38.s53"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0263672"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102354.2010.01234.x"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1532\u20105415.2009.02509.x"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1097\/ncc.0000000000000766"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejon.2014.10.003"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1188\/21.onf.151\u2010160"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.14232"},{"key":"e_1_2_10_30_1","doi-asserted-by":"publisher","DOI":"10.1200\/edbk_239067"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2020003381"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.soncn.2017.05.010"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.soncn.2019.06.014"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2016.1247839"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2012.717623"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.1111\/ecc.13587"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph15102267"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1177\/1609406919874596"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.1177\/1609406920937875"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12885\u2010021\u201008527\u20108"}],"container-title":["Psycho-Oncology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/pon.6245","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,8]],"date-time":"2024-02-08T08:33:53Z","timestamp":1707381233000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/pon.6245"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,11,20]]},"references-count":39,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2024,1]]}},"alternative-id":["10.1002\/pon.6245"],"URL":"https:\/\/doi.org\/10.1002\/pon.6245","archive":["Portico"],"relation":{},"ISSN":["1057-9249","1099-1611"],"issn-type":[{"value":"1057-9249","type":"print"},{"value":"1099-1611","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,11,20]]},"assertion":[{"value":"2023-07-05","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-10-30","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-11-20","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e6245"}}