{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,28]],"date-time":"2026-02-28T05:18:17Z","timestamp":1772255897554,"version":"3.50.1"},"reference-count":33,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2019,10,22]],"date-time":"2019-10-22T00:00:00Z","timestamp":1571702400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["HD089032\u201001"],"award-info":[{"award-number":["HD089032\u201001"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Paediatric Perinatal Epid"],"published-print":{"date-parts":[[2020,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL).<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We conducted a mixed\u2010method study of women with threatened periviable delivery (22 0\/7\u201024 6\/7\u00a0weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi\u2010structured interview\u2014(a) Card sorting nine conditions as an acceptable\/unacceptable QOL for a child; (b) Rating\/ranking seven common concerns in periviable decision making (scale 0\u201010, not at all to extremely important); and (c) \u201cAgreed\/disagreed\u201d with six statements regarding end\u2010of\u2010life treatment, disability, and QOL. Participants were also asked to define \u201cQOL\u201d and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>All mild disabilities were an acceptable QOL, while two\u2010thirds of participants considered long\u2010term mechanical ventilation unacceptable. Although pregnant women rated \u201cImpact on Your Physical\/Mental Health\u201d (average 5.6) and IOs rated \u201cFinancial Concerns\u201d the highest (average 6.6), both groups ranked \u201cFinancial Concerns\u201d as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that \u201cAny amount of life is better than no life at all\u201d (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause \u201cToo much suffering\u201d for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase \u201cQOL\u201d. Although the majority described a good QOL in terms of emotional well\u2010being (eg \u201cloved\u201d, \u201chappy\u201d, \u201csupported\u201d), a poor QOL was described in terms of functionality (eg \u201cdependent\u201d and \u201cconfined\u201d). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ppe.12590","type":"journal-article","created":{"date-parts":[[2019,10,22]],"date-time":"2019-10-22T07:48:20Z","timestamp":1571730500000},"page":"556-564","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth"],"prefix":"10.1111","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0023-4440","authenticated-orcid":false,"given":"Brownsyne","family":"Tucker Edmonds","sequence":"first","affiliation":[{"name":"Department of Obstetrics and Gynecology Indiana University School of Medicine Indianapolis IN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shelley M.","family":"Hoffman","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology Indiana University School of Medicine Indianapolis IN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tatiana","family":"Laitano","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology Indiana University School of Medicine Indianapolis IN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Surya Sruthi","family":"Bhamidipalli","sequence":"additional","affiliation":[{"name":"Department of Biostatistics Indiana University School of Medicine &amp; Richard M. Fairbanks School of Public Health Indianapolis IN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erin","family":"Jeffries","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology Indiana University School of Medicine Indianapolis IN USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"William","family":"Fadel","sequence":"additional","affiliation":[{"name":"Department of Biostatistics Indiana University School of Medicine &amp; Richard M. 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