{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,9]],"date-time":"2026-01-09T19:18:23Z","timestamp":1767986303491,"version":"3.49.0"},"reference-count":28,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2015,9,10]],"date-time":"2015-09-10T00:00:00Z","timestamp":1441843200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Victorian Government's Operational Infrastructure Support Program"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Paediatrics Child Health"],"published-print":{"date-parts":[[2016,1]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>Spinal muscular atrophy (<jats:styled-content style=\"fixed-case\">SMA<\/jats:styled-content>) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies examining the impact of having a family member with a neuromuscular disorder, and none describing parents' experiences of having a child with <jats:styled-content style=\"fixed-case\">SMA<\/jats:styled-content> type 1. This study explored parents' perspectives of having a child with <jats:styled-content style=\"fixed-case\">SMA<\/jats:styled-content> type 1, from diagnosis to bereavement, in order to inform clinical practice by identifying aspects most meaningful to parents and to aid development of support strategies.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This qualitative study undertook thematic analysis of 11 in\u2010depth interviews with 13 bereaved parents of children with <jats:styled-content style=\"fixed-case\">SMA<\/jats:styled-content> type 1.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>While individuals' experiences were unique, common themes emerging from the data include: experiencing shock and anticipatory grief, processing feelings of responsibility and helplessness, experiencing multiple losses including the loss of future reproductive freedom, feeling supported, regaining a sense of control by making decisions about the child's life and death, and finding peace in the dying process.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>These findings highlight the importance of a multidisciplinary approach to the care of such families, including psychosocial support beginning from the time of diagnosis and continuing to bereavement. We suggest areas for further exploration, with a goal to develop family\u2010centred and evidence\u2010based psychosocial care guidelines to complement the current <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>tandards of <jats:styled-content style=\"fixed-case\">C<\/jats:styled-content>are for <jats:styled-content style=\"fixed-case\">S<\/jats:styled-content>pinal <jats:styled-content style=\"fixed-case\">M<\/jats:styled-content>uscular <jats:styled-content style=\"fixed-case\">A<\/jats:styled-content>trophy.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jpc.12993","type":"journal-article","created":{"date-parts":[[2015,9,11]],"date-time":"2015-09-11T00:51:40Z","timestamp":1441932700000},"page":"40-46","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":34,"title":["\u2018A short time but a lovely little short time\u2019: Bereaved parents' experiences of having a child with spinal muscular atrophy type 1"],"prefix":"10.1111","volume":"52","author":[{"given":"Emily J","family":"Higgs","sequence":"first","affiliation":[{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Belinda J","family":"McClaren","sequence":"additional","affiliation":[{"name":"Genetics Education and Health Research Murdoch Childrens Research Institute  Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Margaret AR","family":"Sahhar","sequence":"additional","affiliation":[{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"},{"name":"Victorian Clinical Genetics Services The Royal Children's Hospital  Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Monique M","family":"Ryan","sequence":"additional","affiliation":[{"name":"Department of Paediatrics The University of Melbourne  Melbourne Victoria Australia"},{"name":"Genetics Education and Health Research Murdoch Childrens Research Institute  Melbourne Victoria Australia"},{"name":"Department of Neurology The Royal Children's Hospital  Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robin","family":"Forbes","sequence":"additional","affiliation":[{"name":"Victorian Clinical Genetics Services The Royal Children's Hospital  Melbourne Victoria Australia"},{"name":"Department of Neurology The Royal Children's Hospital  Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2015,9,10]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neuron.2005.12.001"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(08)60921-6"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201821"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(80)90847-8"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/jpc.12291"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073807305788"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1093\/jjco\/hyt024"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2013.102"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2011.41.4078"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2009.166512"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1097\/01376517-200808000-00009"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/1742395309104343"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/07481180701537220"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216306072349"},{"key":"e_1_2_9_16_1","unstructured":"LiamputtongP EzzyDResearching the \u2018vulnerable\u2019.Qualitative Research Methods:Oxford;2005. p.202\u2013227."},{"key":"e_1_2_9_17_1","first-page":"147","volume-title":"Data Analysis and Representation. 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