{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,13]],"date-time":"2026-08-13T20:54:35Z","timestamp":1786654475363,"version":"build-2736575974"},"reference-count":41,"publisher":"SAGE Publications","issue":"8","license":[{"start":{"date-parts":[[2025,7,2]],"date-time":"2025-07-02T00:00:00Z","timestamp":1751414400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000056","name":"National Institute of Nursing Research","doi-asserted-by":"publisher","award":["R21 NR019340"],"award-info":[{"award-number":["R21 NR019340"]}],"id":[{"id":"10.13039\/100000056","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100017551","name":"Children\u2019s National Hospital","doi-asserted-by":"publisher","award":["UL1TR0000075; UL1RR031988"],"award-info":[{"award-number":["UL1TR0000075; UL1RR031988"]}],"id":[{"id":"10.13039\/100017551","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Am J Hosp Palliat Care"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child\u2019s disease. This diverse population may share common goals related to their child\u2019s future care. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We performed inductive content analysis of Respecting Choices Next Steps FAmily CEntered (FACE) pediatric advance care planning conversations to identify themes related to goals of care. Interviews were conducted in the context of beta testing and a randomized control trial of a palliative care and advance care planning intervention for parents of children with rare diseases who cannot participate in medical decision making.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      We analyzed 15 interviews conducted with 19 parents. We identified 13 goals of care themes:\n                      <jats:italic toggle=\"yes\">maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child,<\/jats:italic>\n                      and\n                      <jats:italic toggle=\"yes\">partnering with our medical team<\/jats:italic>\n                      . Families identified goals within 3 to 11 themes (mean = 7).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Parents of children with rare diseases have a multitude of holistic goals related to their child\u2019s care. High-quality advance care planning conversations may help families articulate these goals. Using language expressed by families described here may help healthcare teams and families communicate effectively around treatment plans and goals of care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10499091251356237","type":"journal-article","created":{"date-parts":[[2025,7,2]],"date-time":"2025-07-02T11:14:53Z","timestamp":1751454893000},"page":"851-860","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations"],"prefix":"10.1177","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9545-1095","authenticated-orcid":false,"given":"Tamiko","family":"Younge","sequence":"first","affiliation":[{"name":"Children\u2019s National Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hailey","family":"Moore","sequence":"additional","affiliation":[{"name":"Children\u2019s National Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica D.","family":"Thompkins","sequence":"additional","affiliation":[{"name":"Children\u2019s National Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen E.","family":"Lyon","sequence":"additional","affiliation":[{"name":"Children\u2019s National Hospital"},{"name":"Children\u2019s National Hospital"},{"name":"The George Washington University School of Medicine and Health Sciences"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,7,2]]},"reference":[{"key":"e_1_3_7_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(08)60872-7"},{"key":"e_1_3_7_3_2","volume-title":"Towards a World Health Assembly Resolution on Rare Diseases","author":"Rare Disease International","year":"2024","unstructured":"Rare Disease International. Towards a World Health Assembly Resolution on Rare Diseases; 2024. Accessed December 19, 2024.https:\/\/www.rarediseasesinternational.org\/wp-content\/uploads\/2024\/06\/Briefing-Note-WHA-Resolution-on-Rare-Diseases_June-2024.pdf"},{"key":"e_1_3_7_4_2","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12628"},{"key":"e_1_3_7_5_2","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-018-0294-9"},{"key":"e_1_3_7_6_2","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-8-22"},{"key":"e_1_3_7_7_2","doi-asserted-by":"publisher","DOI":"10.1177\/1049909117739852"},{"key":"e_1_3_7_8_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216319900317"},{"key":"e_1_3_7_9_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2019-2241"},{"key":"e_1_3_7_10_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2019.0059"},{"key":"e_1_3_7_11_2","doi-asserted-by":"publisher","DOI":"10.1007\/s40271-017-0226-z"},{"key":"e_1_3_7_12_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2019-001766"},{"key":"e_1_3_7_13_2","doi-asserted-by":"publisher","DOI":"10.1089\/109662104773709503"},{"key":"e_1_3_7_14_2","doi-asserted-by":"publisher","DOI":"10.1177\/082585971202800104"},{"key":"e_1_3_7_15_2","doi-asserted-by":"publisher","DOI":"10.1177\/1049909119895496"},{"key":"e_1_3_7_16_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-020-03627-2"},{"key":"e_1_3_7_17_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-2394"},{"key":"e_1_3_7_18_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2017-3869"},{"key":"e_1_3_7_19_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2013.943"},{"key":"e_1_3_7_20_2","doi-asserted-by":"publisher","DOI":"10.1097\/NJH.0000000000000512"},{"key":"e_1_3_7_21_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2020-029330"},{"key":"e_1_3_7_22_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2022.20696"},{"key":"e_1_3_7_23_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2023-064557"},{"key":"e_1_3_7_24_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2007.04569.x"},{"key":"e_1_3_7_25_2","volume-title":"Content Analysis: An Introduction to Its Methodology","author":"Krippendorff K","year":"2018","unstructured":"Krippendorff K. Content Analysis: An Introduction to Its Methodology. 4th ed. Sage Publications, Inc; 2018.","edition":"4"},{"key":"e_1_3_7_26_2","volume-title":"The Coding Manual for Qualitative Researchers","author":"Salda\u00f1a J","year":"2021","unstructured":"Salda\u00f1a J. The Coding Manual for Qualitative Researchers. 4th ed. Sage Publications Ltd; 2021.","edition":"4"},{"key":"e_1_3_7_27_2","doi-asserted-by":"publisher","DOI":"10.1177\/1049732304268796"},{"key":"e_1_3_7_28_2","unstructured":"ATLAS.ti scientific software development GmbH. ATLAS.ti windows.(Version 23.2.1) [Computer program]; 2023. https:\/\/atlasti.com"},{"key":"e_1_3_7_29_2","unstructured":"Microsoft corporation. Microsoft Excel [Internet]. 2024. Available from: https:\/\/office.microsoft.com\/excel"},{"key":"e_1_3_7_30_2","doi-asserted-by":"publisher","DOI":"10.1097\/ACM.0000000000000388"},{"key":"e_1_3_7_31_2","doi-asserted-by":"publisher","DOI":"10.1097\/00002820-200104000-00007"},{"key":"e_1_3_7_32_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2021.0344"},{"key":"e_1_3_7_33_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2017.3931"},{"key":"e_1_3_7_34_2","doi-asserted-by":"publisher","DOI":"10.1136\/spcare-2023-004348"},{"key":"e_1_3_7_35_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2023.1602"},{"key":"e_1_3_7_36_2","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1894"},{"key":"e_1_3_7_37_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2020.09.030"},{"key":"e_1_3_7_38_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-022-02525-0"},{"key":"e_1_3_7_39_2","doi-asserted-by":"publisher","DOI":"10.1177\/0825859719885947"},{"key":"e_1_3_7_40_2","volume-title":"International Classification of Functioning Disability and Health (ICF)","author":"Organization WH","year":"2001","unstructured":"Organization WH. International Classification of Functioning Disability and Health (ICF). World Health Organization; 2001."},{"key":"e_1_3_7_41_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01338.x"},{"key":"e_1_3_7_42_2","doi-asserted-by":"publisher","DOI":"10.1177\/10499091221091294"}],"container-title":["American Journal of Hospice and Palliative Medicine\u00ae"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10499091251356237","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/10499091251356237","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10499091251356237","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T07:01:04Z","timestamp":1782457264000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/10499091251356237"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7,2]]},"references-count":41,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2026,8]]}},"alternative-id":["10.1177\/10499091251356237"],"URL":"https:\/\/doi.org\/10.1177\/10499091251356237","relation":{},"ISSN":["1049-9091","1938-2715"],"issn-type":[{"value":"1049-9091","type":"print"},{"value":"1938-2715","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,7,2]]}}}