{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T11:50:15Z","timestamp":1791546615931,"version":"4.3.4"},"reference-count":34,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T00:00:00Z","timestamp":1791504000000},"content-version":"vor","delay-in-days":8,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:00:00Z","timestamp":1790812800000},"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":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>\n                    A prenatal diagnosis of Turner syndrome (TS) presents expectant parents with complex and emotionally demanding decisions under conditions of uncertainty. However, there is limited insight into how parents interpret and integrate medical information, personal experiences, and values during this process. This qualitative study explores how parents who chose to continue a pregnancy following a prenatal TS diagnosis experienced and navigated decision\u2010making. The study was conducted within the Danish healthcare system between September 2024 and October 2025. During this period, we conducted 12 semi\u2010structured interviews with 19 parents of girls diagnosed prenatally with TS (seven joint interviews with both parents and five interviews with the mother only). Interviews were audio\u2010recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. Across interviews, parents repeatedly returned to the question, \u201cHow serious is this?\u201d, and our analysis showed that decision\u2010making unfolded as a dynamic, evolving process rather than a single point of choice. This process was captured through five interrelated themes:\n                    <jats:italic>The crisis of diagnosis<\/jats:italic>\n                    ;\n                    <jats:italic>What parents bring into decision\u2010making<\/jats:italic>\n                    ;\n                    <jats:italic>Contrasting images of Turner syndrome<\/jats:italic>\n                    ;\n                    <jats:italic>What kind of life is possible?<\/jats:italic>\n                    ; and\n                    <jats:italic>The turning point<\/jats:italic>\n                    . These themes illustrate how assessments of seriousness were shaped through an interplay of prior experiences, emerging attachment to the fetus, ultrasound findings, counseling encounters, and social responses. Over time, parents developed a more coherent understanding of the diagnosis, culminating in the decision to continue the pregnancy. In this way, decision\u2010making following a prenatal TS diagnosis extended beyond the evaluation of medical information and involved substantial interpretative and emotional work. Clinical encounters were most meaningful when information was contextualized and aligned with parents' concerns about everyday life and future possibilities. These findings reinforce the importance of prenatal counseling that integrates medical information with support for the interpretative and emotional work through which parents make sense of the diagnosis and navigate uncertainty.\n                  <\/jats:p>","DOI":"10.1002\/jgc4.70298","type":"journal-article","created":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T10:55:08Z","timestamp":1791543308000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["A Qualitative Study of Parental Decision\u2010Making Following a Prenatal Diagnosis of Turner Syndrome: \u201cHow Serious Is\u00a0This?\u201d"],"prefix":"10.1002","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9289-9233","authenticated-orcid":false,"given":"Inger Lily Hjuler","family":"Dorf","sequence":"first","affiliation":[{"name":"Department of Clinical Medicine Aarhus University  Aarhus Denmark"},{"name":"Department of Clinical Genetics Aarhus University Hospital  Aarhus Denmark"},{"name":"Department of Molecular Medicine Aarhus University Hospital  Aarhus Denmark"},{"name":"Department of Endocrinology Aarhus University Hospital  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6177-5780","authenticated-orcid":false,"given":"Stina","family":"Lou","sequence":"additional","affiliation":[{"name":"Department of Clinical Medicine Aarhus University  Aarhus Denmark"},{"name":"Center for Fetal Diagnostics Aarhus University Hospital  Aarhus Denmark"},{"name":"DEFACTUM \u2013 Public Health Research, Central Denmark Region  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9093-6600","authenticated-orcid":false,"given":"Christine Manich Bech","family":"Baggesgaard","sequence":"additional","affiliation":[{"name":"Department of Growth and Reproduction Copenhagen University Hospital \u2013 Rigshospitalet  Copenhagen Denmark"},{"name":"International Center for Research and Research Training in Endocrine Disruption of Male Reproduction and Child Health (EDMaRC) Copenhagen University Hospital \u2013 Rigshospitalet  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-8379-4092","authenticated-orcid":false,"given":"Rune W.","family":"Naeraa","sequence":"additional","affiliation":[{"name":"Department of Pediatric and Adolescent Medicine Aarhus University Hospital  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0250-8049","authenticated-orcid":false,"given":"Casper P.","family":"Hagen","sequence":"additional","affiliation":[{"name":"Department of Growth and Reproduction Copenhagen University Hospital \u2013 Rigshospitalet  Copenhagen Denmark"},{"name":"International Center for Research and Research Training in Endocrine Disruption of Male Reproduction and Child Health (EDMaRC) Copenhagen University Hospital \u2013 Rigshospitalet  Copenhagen Denmark"},{"name":"Department of Clinical Medicine University of Copenhagen  Copenhagen Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9178-4901","authenticated-orcid":false,"given":"Anne","family":"Skakkeb\u00e6k","sequence":"additional","affiliation":[{"name":"Department of Clinical Medicine Aarhus University  Aarhus Denmark"},{"name":"Department of Clinical Genetics Aarhus University Hospital  Aarhus Denmark"},{"name":"Department of Molecular Medicine Aarhus University Hospital  Aarhus Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,10,9]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"crossref","first-page":"241","DOI":"10.1007\/s10897-009-9275-3","article-title":"Parental Decisions Regarding a Prenatally Detected Fetal Chromosomal Abnormality and the Impact of Genetic Counseling: An Analysis of 38 Cases With Aneuploidy in Southeast Turkey","volume":"19","author":"Balkan M.","year":"2010","journal-title":"Journal of Genetic Counseling"},{"key":"e_1_2_13_3_1","doi-asserted-by":"crossref","first-page":"202","DOI":"10.1002\/ajmg.c.31805","article-title":"The Epidemiology of Sex Chromosome Abnormalities","volume":"184","author":"Berglund A.","year":"2020","journal-title":"American Journal of Medical Genetics. Part C, Seminars in Medical Genetics"},{"key":"e_1_2_13_4_1","doi-asserted-by":"crossref","first-page":"1223","DOI":"10.1111\/1467-9566.13559","article-title":"Expressivist Objections to Prenatal Screening and Testing: Perceptions of People Living With Disability","volume":"45","author":"Boardman F.","year":"2023","journal-title":"Sociology of Health & Illness"},{"key":"e_1_2_13_5_1","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using Thematic Analysis in Psychology","volume":"3","author":"Braun V.","year":"2006","journal-title":"Qualitative Research in Psychology"},{"key":"e_1_2_13_6_1","doi-asserted-by":"crossref","DOI":"10.1007\/978-3-319-69909-7_3470-2","volume-title":"Thematic Analysis: A Practical Guide","author":"Braun V.","year":"2022"},{"key":"e_1_2_13_7_1","doi-asserted-by":"crossref","first-page":"608","DOI":"10.1177\/02692163241234800","article-title":"Supporting Best Practice in Reflexive Thematic Analysis Reporting in Palliative Medicine: A Review of Published Research and Introduction to the Reflexive Thematic Analysis Reporting Guidelines (RTARG)","volume":"38","author":"Braun V.","year":"2024","journal-title":"Palliative Medicine"},{"key":"e_1_2_13_8_1","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1080\/13691058.2020.1743882","article-title":"Bodily Rights and Gifts: Intersex, Abrahamic Religions and Human Rights","volume":"23","author":"Cornwall S.","year":"2021","journal-title":"Culture, Health & Sexuality"},{"key":"e_1_2_13_9_1","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0325690","article-title":"Parental Experience of the Diagnostic Process and Its Role in the Decision to Terminate Pregnancy due to Fetal Abnormality; A Qualitative Interview Study","volume":"20","author":"Damm M. F.","year":"2025","journal-title":"PLoS One"},{"key":"e_1_2_13_10_1","doi-asserted-by":"crossref","first-page":"72","DOI":"10.1002\/ajmg.c.32140","article-title":"Parental Decision\u2010Making Following a Prenatal Diagnosis of Turner Syndrome: A Systematic Review","volume":"199","author":"Dorf I. L. H.","year":"2025","journal-title":"American Journal of Medical Genetics Part C: Seminars in Medical Genetics"},{"key":"e_1_2_13_11_1","unstructured":"Folketinget.2025.\u201cLov om \u00e6ndring af sundhedsloven (\u00c6ndring af ugegr\u00e6nsen for den fri abort LSV 126 of April 24 2025).\u201dRetsinformation.https:\/\/www.retsinformation.dk\/eli\/ft\/202413L00126."},{"key":"e_1_2_13_12_1","doi-asserted-by":"crossref","DOI":"10.1093\/sexmed\/qfae046","article-title":"Approaches in Care for People With Variations of Sex Characteristics\u2010Focus Groups in the European Context on the Strengths and Challenges of Multidisciplinary Teams","volume":"12","author":"Gramc M.","year":"2024","journal-title":"Sexual Medicine"},{"key":"e_1_2_13_13_1","doi-asserted-by":"crossref","first-page":"G53","DOI":"10.1093\/ejendo\/lvae050","article-title":"Clinical Practice Guidelines for the Care of Girls and Women With Turner Syndrome: Proceedings From the 2023 Aarhus International Turner Syndrome Meeting","volume":"190","author":"Gravholt C. H.","year":"2024","journal-title":"European Journal of Endocrinology"},{"key":"e_1_2_13_14_1","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1210\/endrev\/bnac016","article-title":"The Changing Face of Turner Syndrome","volume":"44","author":"Gravholt C. H.","year":"2023","journal-title":"Endocrine Reviews"},{"key":"e_1_2_13_15_1","doi-asserted-by":"crossref","first-page":"125","DOI":"10.1177\/0306312718757081","article-title":"Shifting Syndromes: Sex Chromosome Variations and Intersex Classifications","volume":"48","author":"Griffiths D. A.","year":"2018","journal-title":"Social Studies of Science"},{"key":"e_1_2_13_16_1","doi-asserted-by":"crossref","first-page":"605","DOI":"10.1111\/ajo.12501","article-title":"Experiences of Prenatal Diagnosis and Decision\u2010Making About Termination of Pregnancy: A Qualitative Study","volume":"56","author":"Hodgson J.","year":"2016","journal-title":"Australian & New Zealand Journal of Obstetrics & Gynaecology"},{"key":"e_1_2_13_17_1","doi-asserted-by":"crossref","DOI":"10.1002\/jgc4.1962","article-title":"Navigating the Disclosure Landscape: Parents' Perspectives on Healthcare Professionals' Role in Supporting Intersex Children and Families","volume":"34","author":"Horowitz K.","year":"2025","journal-title":"Journal of Genetic Counseling"},{"key":"e_1_2_13_18_1","doi-asserted-by":"crossref","DOI":"10.1002\/jgc4.1905","article-title":"Enhancing Intersex Healthcare: A Qualitative Study of Parental Perspectives on the Role of Genetics","volume":"34","author":"Horowitz K.","year":"2025","journal-title":"Journal of Genetic Counseling"},{"key":"e_1_2_13_19_1","doi-asserted-by":"crossref","first-page":"336","DOI":"10.1177\/0009922818817310","article-title":"Delivering the Diagnosis of Sex Chromosome Aneuploidy: Experiences and Preferences of Parents and Individuals","volume":"58","author":"Jaramillo C.","year":"2019","journal-title":"Clinical Pediatrics (Phila)"},{"key":"e_1_2_13_20_1","doi-asserted-by":"crossref","first-page":"128","DOI":"10.1016\/j.midw.2017.10.003","article-title":"Decision\u2010Making About Prenatal Genetic Testing Among Pregnant Korean\u2010American Women","volume":"56","author":"Jun M.","year":"2018","journal-title":"Midwifery"},{"key":"e_1_2_13_21_1","doi-asserted-by":"crossref","first-page":"1191","DOI":"10.1002\/jgc4.1402","article-title":"How Are Uncertain Prenatal Genetic Results Perceived and Managed Two Years After They Were Received? 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