{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T14:01:39Z","timestamp":1777384899102,"version":"3.51.4"},"reference-count":50,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T00:00:00Z","timestamp":1762905600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences at Children\u2019s National Hospital","doi-asserted-by":"publisher","award":["UL1TR0000075, UL1RR031988"],"award-info":[{"award-number":["UL1TR0000075, UL1RR031988"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000056","name":"National Institute of Nursing Research and the National Institutes of Health","doi-asserted-by":"publisher","award":["R21NR019340"],"award-info":[{"award-number":["R21NR019340"]}],"id":[{"id":"10.13039\/100000056","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Am J Hosp Palliat Care"],"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Caring for a child with a rare disease frequently involves making difficult medical decisions with limited disease-specific information. Advance care planning can assist families in articulating their values and treatment preferences. We aimed to describe parental treatment preferences for life-sustaining therapies and reconsideration of treatment preferences among families of children with rare diseases.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We used inductive content analysis of Respecting Choices Next Steps FAmily CEntered (FACE) pediatric advance care planning interviews and documents to describe parental treatment preferences in a hypothetical clinical scenario.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Eighteen parents across 14 interviews completed an advance care plan. In 13 of 14 advance care plans, parents indicated their preference was to continue all treatments. In 10 of 13 of those plans, parents indicated circumstances in which they would reconsider continuing all treatments which we described using 4 themes: having concerns about child\u2019s quality of life; after allowing some time to see; having certainty in child\u2019s decline; and being at peace.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>While almost all families who completed an advance care plan indicated preference to continue all treatments, most families would reconsider this plan in particular circumstances. Using language expressed by families described here may help providers and families communicate effectively around treatment plans, particularly among the understudied community of children with rare diseases.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10499091251397404","type":"journal-article","created":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T17:44:32Z","timestamp":1762969472000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["\u201c\n                    <i>Consider the Following Situation,<\/i>\n                    \u201d Parental Treatment Preferences for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Plans"],"prefix":"10.1177","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":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hailey","family":"Moore","sequence":"additional","affiliation":[{"name":"Children\u2019s National Hospital"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica D.","family":"Thompkins","sequence":"additional","affiliation":[{"name":"Children\u2019s National Hospital"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"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":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2025,11,12]]},"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","unstructured":"Rare Disease International. 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