{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T03:22:01Z","timestamp":1788924121144,"version":"build-2803163510"},"reference-count":38,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2023,7,12]],"date-time":"2023-07-12T00:00:00Z","timestamp":1689120000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100006058","name":"St. Baldrick's Foundation","doi-asserted-by":"publisher","award":["NIH\/NCI 5T32 CA092408"],"award-info":[{"award-number":["NIH\/NCI 5T32 CA092408"]}],"id":[{"id":"10.13039\/100006058","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2023,10]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Individuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Procedure<\/jats:title>\n                    <jats:p>We invited English\u2010speaking AYAs (age 14\u201325 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi\u2010structured interviews. We used directed content analysis for codebook development and then applied in\u2010depth thematic network analysis to describe their perspectives and experiences with advanced cancer.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non\u2010Hispanic White (56%). Most were diagnosed with leukemia\/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of \u201cnot being able to beat this,\u201d \u201cnot wanting to miss out,\u201d and \u201cliving each day\u201d generated the global theme \u201cdo I have a future?\u201d \u201cMaking tough medical decisions,\u201d \u201cadjusting life\/plans\/perspectives,\u201d and \u201cdecisions about dying\u201d were organized into the global theme \u201cthose decisions \u2026 were really hard.\u201d \u201cFeeling like there is no one to talk to,\u201d \u201cbeing away from family and friends,\u201d and \u201cfeeling like a burden\u201d generated the global theme \u201cI felt very alone.\u201d<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Pediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/pbc.30554","type":"journal-article","created":{"date-parts":[[2023,7,12]],"date-time":"2023-07-12T23:43:41Z","timestamp":1689205421000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["\u201cI won't get to live my life the way I planned it\u201d:\u00a0A qualitative analysis of the experiences of adolescents and young adults with advanced cancer"],"prefix":"10.1002","volume":"70","author":[{"given":"Krysta S.","family":"Barton","sequence":"first","affiliation":[{"name":"Biostatistics Epidemiology and Analytics for Research (BEAR) Core Seattle Children's Research Institute Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8000-0179","authenticated-orcid":false,"given":"Angela","family":"Steineck","sequence":"additional","affiliation":[{"name":"Department of Pediatrics MACC Fund Center for Cancer and Blood Disorders, Medical College of Wisconsin Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Casey A.","family":"Walsh","sequence":"additional","affiliation":[{"name":"Clinical Research Division Fred Hutchinson Cancer Center Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nancy","family":"Lau","sequence":"additional","affiliation":[{"name":"Department of Psychiatry and Behavioral Sciences University of Washington School of Medicine Seattle Washington USA"},{"name":"Center for Child Health, Behavior &amp; Development Seattle Children's Research Institute Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maeve B.","family":"O'Donnell","sequence":"additional","affiliation":[{"name":"Cambia Palliative Care Center of Excellence University of Washington Seattle Washington USA"},{"name":"Center for Clinical &amp; Translational Research Seattle Children's Research Institute Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abby R.","family":"Rosenberg","sequence":"additional","affiliation":[{"name":"Department of Psychosocial Oncology &amp; Palliative Care Dana\u2010Farber Cancer Institute Boston Massachusetts USA"},{"name":"Department of Pediatrics Boston Children's Hospital Boston Massachusetts USA"},{"name":"Department of Pediatrics Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,7,12]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.26056"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018\u20102800"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.27699"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejon.2019.09.008"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1188\/19.ONF.451\u2010458"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.25514"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/ijc.25433"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2016.67.8573"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.26727"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.27883"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.6004\/jnccn.2020.7696"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.5424"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2019.0084"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2019.0093"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2021.03.015"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/00302228221101705"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.3390\/children7080086"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2021.0221"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1097\/ACM.0000000000000388"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305276687"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/nhs.12048"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/146879410100100307"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102648.2007.04569.x"},{"key":"e_1_2_10_25_1","volume-title":"The Practice of Nursing Research: Conduct, Critique and Utilization","author":"Burns","year":"2005"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11135\u2010017\u20100574\u20108"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.3389\/fonc.2022.994934"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2021.11.016"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1111\/ecc.12523"},{"issue":"1","key":"e_1_2_10_30_1","doi-asserted-by":"crossref","DOI":"10.1002\/pbc.30035","article-title":"\u201cThe simple life experiences that every other human gets\u201d: desire for normalcy among adolescents and young adults with advanced cancer","volume":"70","author":"Umaretiya PJ","year":"2023","journal-title":"Pediatr Blood Cancer"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1207\/S15327965PLI1304_01"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2018.78.2128"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520\u2010009\u20100716\u20101"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2021.13193"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913\u2010016\u20101879\u20103"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2015.0009"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.1200\/OP.20.01038"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520\u2010017\u20103984\u20101"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2022.05.017"}],"container-title":["Pediatric Blood &amp; Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/pbc.30554","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,23]],"date-time":"2023-08-23T09:39:31Z","timestamp":1692783571000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/pbc.30554"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7,12]]},"references-count":38,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2023,10]]}},"alternative-id":["10.1002\/pbc.30554"],"URL":"https:\/\/doi.org\/10.1002\/pbc.30554","archive":["Portico"],"relation":{},"ISSN":["1545-5009","1545-5017"],"issn-type":[{"value":"1545-5009","type":"print"},{"value":"1545-5017","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,7,12]]},"assertion":[{"value":"2023-04-21","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-06-29","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-07-12","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e30554"}}