{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T09:57:02Z","timestamp":1753869422836,"version":"3.41.2"},"reference-count":38,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,5,7]],"date-time":"2025-05-07T00:00:00Z","timestamp":1746576000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100002651","name":"Barth Syndrome Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100002651","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Reproductive decision\u2010making is a complex process, especially for carriers of a pathogenic X\u2010linked genetic variant. Studies of X\u2010linked carriers have identified various personal values and concerns that influence reproductive decisions, but these studies provide limited insight into decisional conflict during the reproductive decision\u2010making process. This study aims to explore how carriers of variants known to cause Barth syndrome, a rare X\u2010linked disorder, navigate and experience decisional conflict during reproductive decision\u2010making. Semi\u2010structured interviews were conducted with 27 Barth syndrome carriers recruited through the Barth Syndrome Foundation. Data was analyzed using reflexive thematic analysis with special attention paid to narratives of high and low decisional conflict and the values around which decisional conflict occurred. Findings showed that decisional conflict was a result of internal conflicts between competing value systems. To address decisional conflict, carriers re\u2010prioritized their values, reconsidered the extent to which they allowed certain values to influence reproductive decisions, and altered the content of their values. Value systems could also be reshaped over time by personal experiences, which then could modify levels of decisional conflict in reproductive decisions. Decisional conflict often induces feelings of stress and guilt and could be exacerbated by the opinions of others. Genetic counselors are well equipped to provide decisional and emotional support to X\u2010linked carriers during reproductive decision\u2010making, and their services may help reduce decisional conflict and the negative emotions that accompany it. Counselors whose practice involves creating long\u2010term relationships with patients should help carriers to identify factors that are contributing to internal value conflict and to decide whether and how they want support in this. This support may be provided through long\u2010term genetic counseling structures or partnerships between genetic counselors, support organizations, and mental health professionals.<\/jats:p>","DOI":"10.1002\/jgc4.70035","type":"journal-article","created":{"date-parts":[[2025,5,7]],"date-time":"2025-05-07T12:14:34Z","timestamp":1746620074000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Reproductive decision\u2010making for Barth syndrome carriers: Unexplored complexities"],"prefix":"10.1002","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0009-0004-7501-6696","authenticated-orcid":false,"given":"Julia","family":"Castro","sequence":"first","affiliation":[{"name":"Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases University of Texas Health Science Center at San Antonio  San Antonio Texas USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8040-4600","authenticated-orcid":false,"given":"Cynthia A.","family":"James","sequence":"additional","affiliation":[{"name":"Division of Cardiology Johns Hopkins School of Medicine  Baltimore Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2380-5533","authenticated-orcid":false,"given":"Jill","family":"Owczarzak","sequence":"additional","affiliation":[{"name":"Johns Hopkins Bloomberg School of Public Health  Baltimore Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca","family":"McClellan","sequence":"additional","affiliation":[{"name":"Division of Cardiology Johns Hopkins School of Medicine  Baltimore Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1132-2411","authenticated-orcid":false,"given":"Leila","family":"Jamal","sequence":"additional","affiliation":[{"name":"Genetics Branch, Center for Cancer Research National Cancer Institute, NIH  Bethesda Maryland USA"},{"name":"Department of Bioethics NIH  Bethesda Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,5,7]]},"reference":[{"volume-title":"Practice\u2010based competencies for genetic counselors","year":"2023","author":"Accreditation Council for Genetic Counseling","key":"e_1_2_13_2_1"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780190626426.001.0001"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2014.02.025"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1355"},{"key":"e_1_2_13_6_1","unstructured":"Bong C. K.(2020).Exploring factors that influence reproductive decision\u2010making in Duchenne muscular dystrophy carriers(Doctoral dissertation). University of Pittsburgh."},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1080\/26895269.2022.2129597"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/02692163241234800"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10815\u2010021\u201002270\u20106"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2016.04.027"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11019\u2010011\u20109361\u20109"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-012214640-4\/50011-5"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1136\/jme.2002.002634"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/cge.14345"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/1096\u20108628(20010101)98:1<57::AID\u2010AJMG1007>3.0.CO;2\u2010J"},{"key":"e_1_2_13_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X19851345"},{"key":"e_1_2_13_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/cge.13174"},{"key":"e_1_2_13_19_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1618"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/pd.5476"},{"key":"e_1_2_13_21_1","doi-asserted-by":"publisher","DOI":"10.1093\/humupd\/dmab013"},{"key":"e_1_2_13_22_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.gim.0000215177.28010.6e"},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.10007"},{"key":"e_1_2_13_24_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365\u20102516.2000.00353.x"},{"key":"e_1_2_13_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105302007002456"},{"key":"e_1_2_13_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/0361684320904321"},{"key":"e_1_2_13_27_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010011\u20109391\u20108"},{"key":"e_1_2_13_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1415"},{"key":"e_1_2_13_29_1","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X9501500105"},{"key":"e_1_2_13_30_1","first-page":"256","volume-title":"Encyclopedia of medical decision making","author":"O'Connor A. M.","year":"2009"},{"key":"e_1_2_13_31_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467\u20109566.2010.01289.x"},{"key":"e_1_2_13_32_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2011.01.010"},{"key":"e_1_2_13_33_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1601"},{"key":"e_1_2_13_34_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005\u20102551"},{"key":"e_1_2_13_35_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1338"},{"key":"e_1_2_13_36_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102516.2007.01454.x"},{"volume-title":"MAXQDA 2020 [computer software]","year":"2019","author":"VERBI Software","key":"e_1_2_13_37_1"},{"key":"e_1_2_13_38_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010017\u20100112\u20109"},{"key":"e_1_2_13_39_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10815\u2010020\u201001840\u20104"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jgc4.70035","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,5,7]],"date-time":"2025-05-07T12:14:37Z","timestamp":1746620077000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/jgc4.70035"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5,7]]},"references-count":38,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2025,6]]}},"alternative-id":["10.1002\/jgc4.70035"],"URL":"https:\/\/doi.org\/10.1002\/jgc4.70035","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"type":"print","value":"1059-7700"},{"type":"electronic","value":"1573-3599"}],"subject":[],"published":{"date-parts":[[2025,5,7]]},"assertion":[{"value":"2024-04-26","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-03-24","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-05-07","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70035"}}