{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,3]],"date-time":"2026-05-03T10:32:30Z","timestamp":1777804350069,"version":"3.51.4"},"reference-count":21,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2019,1,15]],"date-time":"2019-01-15T00:00:00Z","timestamp":1547510400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Muskelsvindfonden, the Danish neuromuscular patient association, funded RCFMs participation in the study"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Child Neurol"],"published-print":{"date-parts":[[2019,3]]},"abstract":"<jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Study Design:<\/jats:title>\n                    <jats:p>A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/0883073818822900","type":"journal-article","created":{"date-parts":[[2019,1,15]],"date-time":"2019-01-15T04:43:56Z","timestamp":1547527436000},"page":"210-215","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":21,"title":["Parents\u2019 Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey"],"prefix":"10.1177","volume":"34","author":[{"given":"Kim","family":"Beernaert","sequence":"first","affiliation":[{"name":"End-of-Life Care Research Group, Ghent University & Vrije Universtiteit Brussel (VUB), Ghent, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Malin","family":"L\u00f6vgren","sequence":"additional","affiliation":[{"name":"Ersta Sk\u00f6ndal Br\u00e4cke University College, Department of Health Care Sciences, Palliative Research Centre, Stockholm, Sweden"},{"name":"Department of Women\u2019s and Children\u2019s Health, Paediatric Oncology and Haematology, Childhood Cancer Research Unit, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J\u00f8rgen","family":"Jeppesen","sequence":"additional","affiliation":[{"name":"National Rehabilitation Centre for Neuromuscular Diseases, Aarhus, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulla","family":"Werlauff","sequence":"additional","affiliation":[{"name":"National Rehabilitation Centre for Neuromuscular Diseases, Aarhus, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jes","family":"Rahbek","sequence":"additional","affiliation":[{"name":"National Rehabilitation Centre for Neuromuscular Diseases, Aarhus, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thomas","family":"Sejersen","sequence":"additional","affiliation":[{"name":"Department of Women\u2019s and Children\u2019s Health, Paediatric Neurology, Karolinska Institutet, Karolinska University Hospital, Astrid Lindgren Children\u2019s Hospital, Stockholm, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulrika","family":"Kreicbergs","sequence":"additional","affiliation":[{"name":"Ersta Sk\u00f6ndal Br\u00e4cke University College, Department of Health Care Sciences, Palliative Research Centre, Stockholm, Sweden"},{"name":"Department of Women\u2019s and Children\u2019s Health, Paediatric Oncology and Haematology, Childhood Cancer Research Unit, Karolinska Institutet, Karolinska 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