{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T05:53:01Z","timestamp":1777614781903,"version":"3.51.4"},"reference-count":30,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2021,2,6]],"date-time":"2021-02-06T00:00:00Z","timestamp":1612569600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100004243","name":"Prinses Beatrix Spierfonds","doi-asserted-by":"publisher","award":["PZ.PS17\u201002"],"award-info":[{"award-number":["PZ.PS17\u201002"]}],"id":[{"id":"10.13039\/501100004243","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"published-print":{"date-parts":[[2021,7]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>To gain insight into parents\u2019 perspectives about their decision\u2010making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that influence this process.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>It is important physicians understand that there are different perspectives influencing the decision\u2010making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision.<\/jats:p><\/jats:sec><jats:sec><jats:label\/><jats:p>\n<jats:boxed-text content-type=\"box\" position=\"anchor\"><jats:caption><jats:title>What this paper adds<\/jats:title><\/jats:caption><jats:p>\n<jats:list list-type=\"bullet\">\n\n<jats:list-item><jats:p>Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>Parents\u2019 perspectives varied from battling the disease to preserving quality of life.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>Open communication about the pros and cons of treatment with clinicians facilitated decision\u2010making.<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>Clear and honest information facilitated the alignment of values and goals.<\/jats:p><\/jats:list-item>\n<\/jats:list>\n<\/jats:p><\/jats:boxed-text>\n<\/jats:p><\/jats:sec>","DOI":"10.1111\/dmcn.14825","type":"journal-article","created":{"date-parts":[[2021,2,8]],"date-time":"2021-02-08T19:10:15Z","timestamp":1612811415000},"page":"816-823","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Parents\u2019 perspectives on nusinersen treatment for children with spinal muscular atrophy"],"prefix":"10.1111","volume":"63","author":[{"given":"Mette","family":"van Kruijsbergen","sequence":"first","affiliation":[{"name":"Center of Excellence in Rehabilitation Medicine UMC Utrecht Brain Center and De Hoogstraat Rehabilitation University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carin D","family":"Schr\u00f6der","sequence":"additional","affiliation":[{"name":"Center of Excellence in Rehabilitation Medicine UMC Utrecht Brain Center and De Hoogstraat Rehabilitation University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"},{"name":"Ecare4you Amersfoort the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8324-518X","authenticated-orcid":false,"given":"Marjolijn","family":"Ketelaar","sequence":"additional","affiliation":[{"name":"Center of Excellence in Rehabilitation Medicine UMC Utrecht Brain Center and De Hoogstraat Rehabilitation University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8970-2740","authenticated-orcid":false,"given":"W Ludo","family":"van der Pol","sequence":"additional","affiliation":[{"name":"UMC Utrecht Brain Center Department of Neurology University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0084-4644","authenticated-orcid":false,"given":"Inge","family":"Cuppen","sequence":"additional","affiliation":[{"name":"UMC Utrecht Brain Center Department of Neurology University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Annette","family":"van der Geest","sequence":"additional","affiliation":[{"name":"Center of Excellence in Rehabilitation Medicine UMC Utrecht Brain Center and De Hoogstraat Rehabilitation University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"},{"name":"Department of Rehabilitation Physical Therapy Science &amp; Sports University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fay\u2010Lynn","family":"Asselman","sequence":"additional","affiliation":[{"name":"UMC Utrecht Brain Center Department of Neurology University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4902-1887","authenticated-orcid":false,"given":"Maarten J","family":"Fischer","sequence":"additional","affiliation":[{"name":"Center of Excellence in Rehabilitation Medicine UMC Utrecht Brain Center and De Hoogstraat Rehabilitation University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Johanna M A","family":"Visser\u2010Meily","sequence":"additional","affiliation":[{"name":"Center of Excellence in Rehabilitation Medicine UMC Utrecht Brain Center and De Hoogstraat Rehabilitation University Medical Center Utrecht, Utrecht University Utrecht the Netherlands"},{"name":"Department of Rehabilitation Physical Therapy Science &amp; 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