{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,6]],"date-time":"2026-01-06T13:54:45Z","timestamp":1767707685157,"version":"3.40.5"},"reference-count":22,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2022,12,2]],"date-time":"2022-12-02T00:00:00Z","timestamp":1669939200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2023,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Cystic fibrosis (CF), a genetic disease and chronic illness, affects multiple organ systems and requires exceptional medical care and treatment. Few studies have assessed the diagnosis disclosure process to well children when their sibling(s) have CF, and none have evaluated the association between parental knowledge of CF and the disclosure of CF. The objectives of this study were to assess parental understanding of CF, demonstrate the most commonly shared topics and their frequencies of discussion with well children, and identify associations between parental understanding of CF and aspects of the disclosure process to well children. Parents were recruited from CF support organizations and asked to complete an online, anonymous survey. Individuals were eligible to participate in the study if they had at least one living child with CF and at least one living child without CF. Completed surveys from 48 individuals revealed that most parents began discussing a sibling's diagnosis of CF with the first\u2010born well child at 5.4\u2009years old. Topics related to CF were discussed openly and as needed with their well children (<jats:italic>n<\/jats:italic>\u00a0=\u00a044). The most frequently discussed topic, and the topic ranked most important (1.93 of 5, SD: 1.17) by 40 participants (90.9%), was medical concerns and treatment for CF. Fewer parents (<jats:italic>n<\/jats:italic>\u00a0=\u00a018, 40.9%) reported discussing the financial impact of CF, and many ranked this as least important to share (4.64 of 5, SD: 0.75). The CF knowledge assessment revealed that participants were well\u2010informed about CF, with a mean total score of 8.9\/10 (SD: 0.91). There were no associations between CF knowledge assessment scores, education level, income,\u00a0and the topics discussed with well children. These results can be utilized by genetic counselors and other healthcare specialists in discussion with parents about the disclosure process of a diagnosis of CF to well children.<\/jats:p>","DOI":"10.1002\/jgc4.1658","type":"journal-article","created":{"date-parts":[[2022,12,2]],"date-time":"2022-12-02T08:41:48Z","timestamp":1669970508000},"page":"486-494","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Exploring parental cystic fibrosis disclosure to well children"],"prefix":"10.1002","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1294-7982","authenticated-orcid":false,"given":"Amanda","family":"Boyer","sequence":"first","affiliation":[{"name":"University of Maryland School of Medicine  Baltimore Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karen","family":"Raraigh","sequence":"additional","affiliation":[{"name":"McKusick\u2010Nathans Department of Genetic Medicine Johns Hopkins University  Baltimore Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephanie","family":"Riley","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Maryland School of Medicine  Baltimore Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julie","family":"Frank","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Maryland School of Medicine  Baltimore Maryland USA"},{"name":"GeneDx Inc  Gaithersburg Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,12,2]]},"reference":[{"key":"e_1_2_14_2_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.66.6.912"},{"key":"e_1_2_14_3_1","doi-asserted-by":"publisher","DOI":"10.1155\/2016\/9458980"},{"volume-title":"Annual data report Bethesda, Maryland","year":"2019","author":"Cystic Fibrosis Foundation Patient Registry","key":"e_1_2_14_4_1"},{"key":"e_1_2_14_5_1","doi-asserted-by":"publisher","DOI":"10.1034\/j.1399-0004.2003.00142.x"},{"key":"e_1_2_14_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.NAJ.0000348607.31983.6e"},{"key":"e_1_2_14_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2005.05.008"},{"key":"e_1_2_14_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493518814930"},{"key":"e_1_2_14_9_1","doi-asserted-by":"publisher","DOI":"10.1207\/s15324834basp0104_5"},{"key":"e_1_2_14_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840706287404"},{"key":"e_1_2_14_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.10396"},{"key":"e_1_2_14_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840718755401"},{"key":"e_1_2_14_13_1","doi-asserted-by":"publisher","DOI":"10.3390\/IJNS6030054"},{"key":"e_1_2_14_14_1","unstructured":"O'Haver J. 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