{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,20]],"date-time":"2026-10-20T17:27:34Z","timestamp":1792517254774,"version":"4.5.0"},"reference-count":24,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2020,5,29]],"date-time":"2020-05-29T00:00:00Z","timestamp":1590710400000},"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":["J Paediatrics Child Health"],"published-print":{"date-parts":[[2020,8]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>In families with a child diagnosed with spinal muscular atrophy (SMA), siblings who do not have SMA could still be genetic carriers of the condition. This study is the first to explore how siblings of patients with SMA learn about the condition and their genetic risk.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>In\u2010depth, semi\u2010structured interviews were conducted with several parents and unaffected siblings of people with SMA types II and III in Australia. Thematic analysis was performed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Siblings described learning about SMA gradually over time through conversations with their parents and other sources, including the Internet, biology classes and support groups. Parents and unaffected siblings described challenges in family communication due to the emotional intensity associated with having SMA in the family. Most siblings did not report learning from their family how the inheritance of SMA related to their own genetic carrier risk and possible reproductive implications.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Siblings described their parents as being open and honest in communicating about SMA; however, this study found that communication before the age of understanding abstract concepts, in combination with the emotional intensity of SMA, resulted in gaps in knowledge about SMA.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jpc.14915","type":"journal-article","created":{"date-parts":[[2020,5,29]],"date-time":"2020-05-29T08:26:10Z","timestamp":1590740770000},"page":"1263-1269","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Communication about spinal muscular atrophy and genetic risk within families: An Australian pilot study"],"prefix":"10.1111","volume":"56","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4594-8279","authenticated-orcid":false,"given":"Ellen","family":"Pieper","sequence":"first","affiliation":[{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adrienne","family":"Sexton","sequence":"additional","affiliation":[{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"},{"name":"Genomic Medicine and Parkville Familial Cancer Centre The Royal Melbourne Hospital  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monique M","family":"Ryan","sequence":"additional","affiliation":[{"name":"Genetics Education and Health Research Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Neurology The Royal Children's Hospital  Melbourne Victoria Australia"},{"name":"Medicine, Dentistry and Health science The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robin","family":"Forbes","sequence":"additional","affiliation":[{"name":"Genetics Education and Health Research Murdoch Children's Research Institute  Melbourne Victoria Australia"},{"name":"Department of Neurology The Royal Children's Hospital  Melbourne Victoria Australia"},{"name":"Victorian Clinical Genetics Services, The Royal Children's Hospital  Melbourne Victoria Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,5,29]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-6-71"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201821"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2012.05.067"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2017.11.005"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2017.11.004"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073807305788"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201883"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2012.09.002"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/01460860802475184"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-015-9898-5"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2010.258"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-011-9361-1"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2011.3"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687-017-0337-1"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.7748\/ns2009.02.23.23.42.c6800"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2011-100087"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2005.05.008"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-016-9964-7"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-018-0251-7"},{"key":"e_1_2_7_22_1","first-page":"62","article-title":"\"Reputable\" but inaccurate: Reproductive health information for adolescents on the web","volume":"38","author":"Yen S","year":"2010","journal-title":"Knowledge Quest"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1080\/14768320701235249"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-014-9774-8"},{"key":"e_1_2_7_25_1","first-page":"36","article-title":"Disenfranchised grief, bereavement, and the Internet: Alone and together across the distance","volume":"12","author":"Gilbert KR","year":"2009","journal-title":"Grief Matters Aust. 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