{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T05:25:31Z","timestamp":1782797131082,"version":"3.54.5"},"reference-count":33,"publisher":"BMJ","issue":"3","funder":[{"DOI":"10.13039\/501100000145","name":"Alberta Innovates - Health Solutions","doi-asserted-by":"publisher","award":["P151"],"award-info":[{"award-number":["P151"]}],"id":[{"id":"10.13039\/501100000145","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["Med Humanities"],"accepted":{"date-parts":[[2025,1,24]]},"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:p>There is a narrative told among healthcare providers that the public stories of trisomy 18 do not reflect the experiences of the many families navigating this diagnosis. This is in the context of a recognised paradigm shift occurring in the treatment of children born with trisomy 18 from one focused solely on comfort to one that considers the potential of medical-surgical interventions to afford survival. This study aims to elicit and explore phenomenologically parents\u2019 narratives of trisomy 18. The focus is on the full spectrum of trisomy 18: whether it was diagnosed before or after birth, whether the child\u2019s life was of short or long duration and whether invasive or palliative care was sought. While trisomy 18 was not univocal of the children\u2019s stories, as a focus of this qualitative inquiry unified them. Healthcare providers may benefit from understanding how trisomy 18 may affect a particular diagnosis experience, whether made during pregnancy or the days after birth when parents are still getting to know their child. As parents live with this diagnosis, pregnancy and the life of their child may be shaped by an uncertainty of a life-limiting condition, whereby care is bounded by what is and is not possible. And, we may appreciate how trisomy 18 imparts meanings on ordinary and extraordinary moments for children and their families in a recognisable form. The understandings gained from this research may support healthcare professionals\u2019 reflective clinical practices as they care for children and their families affected by this diagnosis.<\/jats:p>","DOI":"10.1136\/medhum-2024-013188","type":"journal-article","created":{"date-parts":[[2025,2,17]],"date-time":"2025-02-17T13:20:24Z","timestamp":1739798424000},"page":"352-359","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":4,"title":["Parental perspectives of trisomy 18: common threads of a life-limiting diagnosis"],"prefix":"10.1136","volume":"51","author":[{"given":"Evelyn","family":"Armour","sequence":"first","affiliation":[{"name":"University of Alberta, Edmonton, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3382-7480","authenticated-orcid":false,"given":"Melissa J","family":"MacPherson","sequence":"additional","affiliation":[{"name":"University of Alberta, Edmonton, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl","family":"Mack","sequence":"additional","affiliation":[{"name":"University of Alberta, Edmonton, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6070-0314","authenticated-orcid":false,"given":"Michael","family":"van Manen","sequence":"additional","affiliation":[{"name":"University of Alberta, Edmonton, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2025,2,17]]},"reference":[{"key":"2025121605450752000_51.3.352.1","unstructured":"Oxford English Dictionary . 2024 . Available from : https:\/\/www.oed.com\/"},{"key":"2025121605450752000_51.3.352.2","doi-asserted-by":"crossref","unstructured":"Armour E. , MacPherson M. J. , Mack C. , Yaskina M. , and van Manen M. . 2024. \u201cLiveborn Children with Trisomy 18: A Retrospective Review\u201d. Paediatrics & Child Health. doi:10.1093\/pch\/pxae097","DOI":"10.1093\/pch\/pxae097"},{"key":"2025121605450752000_51.3.352.3","doi-asserted-by":"publisher","DOI":"10.1177\/1078390314561326"},{"key":"2025121605450752000_51.3.352.4","doi-asserted-by":"publisher","DOI":"10.1055\/s-0041-1732363"},{"key":"2025121605450752000_51.3.352.5","doi-asserted-by":"crossref","DOI":"10.1186\/1750-1172-7-81","article-title":"\u201cThe Trisomy 18 Syndrome\u201d","volume":"7","author":"Cereda","year":"2012","journal-title":"Orphanet Journal of Rare Diseases"},{"key":"2025121605450752000_51.3.352.6","doi-asserted-by":"publisher","DOI":"10.1177\/1321103X060270010301"},{"key":"2025121605450752000_51.3.352.7","unstructured":"Derrida J . 1997 . Translated by Gayatri Chakravorty S. . Of Grammatology . Johns Hopkins University Press."},{"key":"2025121605450752000_51.3.352.8","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2017.06.021"},{"key":"2025121605450752000_51.3.352.9","doi-asserted-by":"crossref","unstructured":"Frank A. W . 1995 . The Wounded Storyteller: Body, Illness, and Ethics. The University of Chicago Press .","DOI":"10.7208\/chicago\/9780226260037.001.0001"},{"key":"2025121605450752000_51.3.352.10","unstructured":"Gadamer H.-G . 1996. Translated by Jason G. and Nicholas W. . The Enigma of Health: The Art of Healing in a Scientific Age. Stanford University Press."},{"key":"2025121605450752000_51.3.352.11","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.36298"},{"key":"2025121605450752000_51.3.352.12","doi-asserted-by":"publisher","DOI":"10.3109\/14767051003758879"},{"key":"2025121605450752000_51.3.352.13","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.62097"},{"issue":"3\u20134","key":"2025121605450752000_51.3.352.14","doi-asserted-by":"crossref","first-page":"362","DOI":"10.1111\/jocn.13056","article-title":"\u201cOn Duty All the Time: Health and Quality of Life among Immigrant Parents Caring for a Child with Complex Health Needs\u201d","volume":"25","author":"Kvarme","year":"2016","journal-title":"Journal of Clinical Nursing"},{"key":"2025121605450752000_51.3.352.15","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2016.9470"},{"key":"2025121605450752000_51.3.352.16","first-page":"s3","article-title":"\u201cMaking Decisions to Limit Treatment in Life-Limiting and Life-Threatening Conditions in Children: A Framework for Practice\u201d","volume":"100 Suppl 2","author":"Larcher","year":"2015","journal-title":"Archives of Disease in Childhood"},{"key":"2025121605450752000_51.3.352.17","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2013.0098"},{"key":"2025121605450752000_51.3.352.18","doi-asserted-by":"publisher","DOI":"10.1097\/MOP.0000000000000076"},{"key":"2025121605450752000_51.3.352.19","unstructured":"Nancy J.-L . 2021. Translated by Corey Stockwell S. . The Fragile Skin of the World. Polity Press."},{"key":"2025121605450752000_51.3.352.20","doi-asserted-by":"publisher","DOI":"10.1055\/s-0037-1600912"},{"key":"2025121605450752000_51.3.352.21","unstructured":"Ricoeur P . 1992 . Translated by Kathleen B. . Oneself as Another. University of Chicago Press ."},{"issue":"1","key":"2025121605450752000_51.3.352.22","doi-asserted-by":"crossref","DOI":"10.1186\/s12910-023-00994-x","article-title":"\u201c\u2018She Was Finally Mine\u2019: The Moral Experience of Families in the Context of Trisomy 13 and 18- a Scoping Review with Thematic Analysis\u201d","volume":"25","author":"Ritchie","year":"2024","journal-title":"BMC Medical Ethics"},{"key":"2025121605450752000_51.3.352.23","unstructured":"Roche . 2024 . \u201cPrenatal Screening for Expecting Parents.\u201d https:\/\/harmonytest.roche.com\/global\/en\/home.html ."},{"key":"2025121605450752000_51.3.352.24","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320490203"},{"key":"2025121605450752000_51.3.352.25","doi-asserted-by":"crossref","unstructured":"Schlosser M.-P. , MacPherson M. J. , Castro-Codesal M. , Mack C. , Sue-Milne K. , Wren T. , Shapka L. , Kung J. Y. , and van Manen M. . 2024 . \u201cLiveborn Children with Trisomy 18: A Scoping Review\u201d . Journal of Neonatal-Perinatal Medicine . doi:10.1177\/19345798241302276","DOI":"10.1177\/19345798241302276"},{"key":"2025121605450752000_51.3.352.26","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-019-03531-4"},{"issue":"2","key":"2025121605450752000_51.3.352.27","doi-asserted-by":"crossref","DOI":"10.1111\/nin.12341","article-title":"\u201cParental Experience of Hope in Pediatric Palliative Care: Critical Reflections on an Exemplar of Parents of a Child with Trisomy 18\u201d","volume":"27","author":"Szabat","year":"2020","journal-title":"Nursing Inquiry"},{"key":"2025121605450752000_51.3.352.28","unstructured":"van Manen M 1997 . Research Lived Experience: Human Science for an Action Sensitive Pedagogy. 2nd edition . Routledge ."},{"key":"2025121605450752000_51.3.352.29","doi-asserted-by":"publisher","DOI":"10.1177\/104973202129119784"},{"key":"2025121605450752000_51.3.352.30","doi-asserted-by":"crossref","unstructured":"van Manen M 2021 . The Birth of Ethics: Phenomenological Reflections on Life\u2019s Beginnings. Routledge .","DOI":"10.4324\/9781003110590"},{"key":"2025121605450752000_51.3.352.31","doi-asserted-by":"crossref","unstructured":"van Manen M 2023 . Phenomenology of Practice: Meaning-Giving Methods in Phenomenological Research and Writing. 2nd edition . Routledge .","DOI":"10.4324\/9781003228073"},{"key":"2025121605450752000_51.3.352.32","doi-asserted-by":"crossref","unstructured":"van Manen M van Manen M. . 2021 . Classic Writings for a Phenomenology of Practice. Routledge .","DOI":"10.4324\/9781003011798"},{"key":"2025121605450752000_51.3.352.33","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-019-03393-w"}],"container-title":["Medical Humanities"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/medhum-2024-013188","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,16]],"date-time":"2025-12-16T13:45:30Z","timestamp":1765892730000},"score":1,"resource":{"primary":{"URL":"https:\/\/mh.bmj.com\/lookup\/doi\/10.1136\/medhum-2024-013188"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,2,17]]},"references-count":33,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2025,8,21]]},"published-print":{"date-parts":[[2025,9]]}},"alternative-id":["10.1136\/medhum-2024-013188"],"URL":"https:\/\/doi.org\/10.1136\/medhum-2024-013188","relation":{},"ISSN":["1468-215X","1473-4265"],"issn-type":[{"value":"1468-215X","type":"print"},{"value":"1473-4265","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,2,17]]}}}