{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,7]],"date-time":"2026-07-07T22:25:46Z","timestamp":1783463146672,"version":"3.55.0"},"reference-count":40,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T00:00:00Z","timestamp":1778716800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T00:00:00Z","timestamp":1778716800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Sickle cell disease (SCD) is a progressive, life\u2010limiting disease that begins in childhood. Effective SCD management is critical during the transition from pediatric to adult care when morbidity and mortality risks increase. Yet, this transition often coincides with disease\u2010management responsibilities shifting from parents to adolescents, raising questions about adolescents\u2019 preparedness. The current qualitative study examines adolescents\u2019 (ages 13\u201317) and their parents\u2019 experiences with shifting disease\u2010management responsibilities in preparation for transitioning to adult care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Adolescents with SCD (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a021; ages 13\u201317) and their parents (\n                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a018) participated in individual semi\u2010structured interviews exploring when and how disease\u2010management responsibilities shift during adolescence and concerns regarding transitioning from pediatric to adult care. Data were transcribed verbatim, cleaned, systematically coded, and analyzed using applied thematic analysis.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Adolescents primarily identified as Black\/African American or Afro\u2010Latino (91%) and male (62%). Parents were primarily mothers (82%), publicly insured (52%), and Black\/African American (94%). Adolescents and parents emphasized feeling unprepared to transition from pediatric to adult care. Gradually shifting SCD management responsibilities from adolescents to parents fostered adolescents\u2019 self\u2010efficacy. Yet, both adolescents and parents described how insufficient knowledge of the transition process and adolescents\u2019 underdeveloped self\u2010advocacy skills fueled their concerns about eventually transitioning to adult care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>Understanding how and when adolescents assume more disease\u2010management responsibilities may inform ways to mitigate morbidity and mortality during adolescence and emerging adulthood. Findings inform potential approaches for supporting adolescents\u2019 acquisition of disease\u2010management skills necessary for transition readiness and that could ultimately reduce risk of premature morbidity and mortality in adulthood.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/1545-5017.70317","type":"journal-article","created":{"date-parts":[[2026,5,14]],"date-time":"2026-05-14T12:56:16Z","timestamp":1778763376000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Moving on Up: Shifting Sickle Cell Disease Management During Adolescence in Preparation for Adulthood"],"prefix":"10.1002","volume":"73","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5647-8650","authenticated-orcid":false,"given":"Ariel O.","family":"Blakey","sequence":"first","affiliation":[{"name":"Child and Family Health Lab Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ava F.","family":"Maurillo","sequence":"additional","affiliation":[{"name":"Child and Family Health Lab Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"},{"name":"Boston University School of Public Health  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina M.","family":"Amaro","sequence":"additional","affiliation":[{"name":"Child and Family Health Lab Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"},{"name":"Nemours Children's Hospital  Wilmington Delaware USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patricia L.","family":"Kavanagh","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Boston University Chobanian &amp; Avedisian School of Medicine  Boston Massachusetts USA"},{"name":"Boston Medical Center  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arvin","family":"Garg","sequence":"additional","affiliation":[{"name":"Child Health Equity Center Department of Pediatrics, UMass Chan Medical School  Worcester Massachusetts USA"},{"name":"UMass Memorial Children's Medical Center  Worcester Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mari\u2010Lynn","family":"Drainoni","sequence":"additional","affiliation":[{"name":"Section of Infectious Diseases Department of Medicine, Boston Medical Center &amp; Boston University Chobanian &amp; Avedisian School of Medicine  Boston Massachusetts USA"},{"name":"Department of Health Law Policy &amp; Management Boston University School of Public Health  Boston Massachusetts USA"},{"name":"Evans Center for Implementation and Improvement Sciences Department of Medicine Boston University Chobanian &amp; Avedisian School of Medicine  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristin","family":"Long","sequence":"additional","affiliation":[{"name":"Child and Family Health Lab Department of Psychological and Brain Sciences Boston University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,5,14]]},"reference":[{"key":"e_1_2_10_2_1","volume-title":"Data & Statistics on Sickle Cell Disease","author":"CDC","year":"2022"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978\u20100\u201012\u2010802973\u20102.00018\u20105"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2022.10233"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1542\/pir.28\u20107\u2010259"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.2165\/11632890\u2010000000000\u201000000"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.21676"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014\u20100177"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2008\u20100292"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2004\u20101321"},{"key":"e_1_2_10_11_1","volume-title":"Six Core Elements of Health Care TransitionTM 3.0","author":"White P.","year":"2020"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood\u20102009\u201007\u2010233700"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010\u20101791"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPH.0000000000001618"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1515\/ijamh\u20102015\u20100010"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.21974"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.21880"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.24870"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2023.5914"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12325\u2010015\u20100197\u20101"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1177\/003335491312800206"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2011\u20101635"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1037\/h0089788"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1177\/0033354920931832"},{"key":"e_1_2_10_25_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1080\/15424065.2016.1259026"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780198565895.001.0001"},{"key":"e_1_2_10_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/104973239500500201"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781412995658"},{"key":"e_1_2_10_30_1","unstructured":"\u201cNVivo (Version 12) 2018 \u201dQSR International Pty Ltd accessed September 5 2022 https:\/\/www.qsrinternational.com\/nvivo\u2010qualitative\u2010data\u2010analysissoftware\/home."},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1177\/160940690200100202"},{"issue":"3","key":"e_1_2_10_32_1","first-page":"23","article-title":"Theme in Qualitative Content Analysis and Thematic Analysis","volume":"20","author":"Vaismoradi M.","year":"2019","journal-title":"Forum Qualitative Sozialforschung"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781483384436"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010\u20103686"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.1353\/hpu.2015.0094"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.1737"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2016.06.008"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13063\u2010019\u20104009\u20109"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.12974\/2312\u20105411.2015.02.01.3"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1515\/ijamh\u20102015\u20100014"},{"key":"e_1_2_10_41_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40615\u2010022\u201001483\u20104"}],"container-title":["Pediatric Blood &amp; 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