{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,3]],"date-time":"2026-05-03T10:32:16Z","timestamp":1777804336780,"version":"3.51.4"},"reference-count":31,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2018,12,5]],"date-time":"2018-12-05T00:00:00Z","timestamp":1543968000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"G\u00e5l\u00f6 Foundation","award":["5420"],"award-info":[{"award-number":["5420"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Child Neurol"],"published-print":{"date-parts":[[2019,2]]},"abstract":"<jats:sec>\n                    <jats:title>Background and aims:<\/jats:title>\n                    <jats:p>Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families\u2019 needs, more knowledge about parents\u2019 experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents\u2019 satisfaction with various care settings, and (3) parents\u2019 satisfaction with coordination between settings.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/0883073818811544","type":"journal-article","created":{"date-parts":[[2018,12,6]],"date-time":"2018-12-06T00:28:07Z","timestamp":1544056087000},"page":"104-112","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":13,"title":["Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved"],"prefix":"10.1177","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9798-0276","authenticated-orcid":false,"given":"Elin","family":"Hjorth","sequence":"first","affiliation":[{"name":"Ersta Sk\u00f6ndal Br\u00e4cke University College, Department of Health Care Sciences, Palliative Research Centre, 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":"The 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":"Thomas","family":"Sejersen","sequence":"additional","affiliation":[{"name":"The 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":"J\u00f8rgen","family":"Jeppesen","sequence":"additional","affiliation":[{"name":"National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulla","family":"Werlauff","sequence":"additional","affiliation":[{"name":"National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jes","family":"Rahbek","sequence":"additional","affiliation":[{"name":"National Rehabilitation Center for Neuromuscular Diseases (RCFM), Aarhus, Denmark"}],"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":"The Department of Women\u2019s and Children\u2019s Health, Paediatric Oncology and Haematology, Childhood Cancer Research Unit, Karolinska Institutet, Karolinska University Hospital, Stockholm, 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