{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,22]],"date-time":"2026-01-22T12:08:28Z","timestamp":1769083708359,"version":"3.49.0"},"reference-count":20,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2022,4,26]],"date-time":"2022-04-26T00:00:00Z","timestamp":1650931200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2022,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Aims<\/jats:title><jats:p>Parents of children with spinal muscular atrophy (SMA) often struggle with the all\u2010consuming nature of the demands of caring for a child with substantial physical needs. Our aim was to explore experiences, challenges and needs of parents of a child with SMA in a COVID\u201019 pandemic situation.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>Nineteen parents of 21 children (15\u2009months to 13\u2009years of age) with SMA types 1\u20133 participated in semi\u2010structured interviews in June to July 2020. The interviews were analysed using inductive thematic analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Parents mentioned the protection of the health and well\u2010being of the child as the central perspective and driving force during the COVID\u201019 pandemic. Three subthemes were identified: (1) responsibility, (2) balancing vulnerability and resilience and (3) (in)security.<\/jats:p><jats:p>Some parents focused on the positive aspects during the lockdown, such as continuation of nusinersen treatment and family life. Some parents described helpful and positive cognitions to cope with the situation. In general, parents described a need for information with regard to COVID\u201019 and their child with SMA and a need for discussing their dilemmas and insecurities with a healthcare professional.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>Parents put the health and well\u2010being of their children first during the pandemic. From this study, we learned that parents of children with SMA need information and value direct contact with a healthcare professional to share their dilemmas and insecurities. The dialogue can help to empower parents in the conflicts and decisions they have to make during a pandemic.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.13014","type":"journal-article","created":{"date-parts":[[2022,4,21]],"date-time":"2022-04-21T05:38:05Z","timestamp":1650519485000},"page":"1062-1070","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["\u2018This battle, between your gut feeling and your mind. Try to find the right balance\u2019: Parental experiences of children with spinal muscular atrophy during COVID\u201019 pandemic"],"prefix":"10.1111","volume":"48","author":[{"given":"Irene L. B.","family":"Oude Lansink","sequence":"first","affiliation":[{"name":"Department of Rehabilitation, Physical Therapy Science &amp; Sports University Medical Center Utrecht, Wilhelmina Children's Hospital  Utrecht The Netherlands"},{"name":"Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center University Medical Center Utrecht, and De Hoogstraat Rehabilitation  Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"P. C. Carolien","family":"van Stam","sequence":"additional","affiliation":[{"name":"Eleos Mental Health Care Institution  Amersfoort The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eline C. W. M.","family":"Schafrat","sequence":"additional","affiliation":[{"name":"Department of Pediatric Psychology and Social Work University Medical Center Utrecht, Wilhelmina Children's Hospital  Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Manouk","family":"Mocking","sequence":"additional","affiliation":[{"name":"Department of Pediatric Psychology and Social Work University Medical Center Utrecht, Wilhelmina Children's Hospital  Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S. Dido","family":"Prins","sequence":"additional","affiliation":[{"name":"Department of Psychiatry Tergooi Hospital  Hilversum The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anita","family":"Beelen","sequence":"additional","affiliation":[{"name":"Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center University Medical Center Utrecht, and De Hoogstraat Rehabilitation  Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Inge","family":"Cuppen","sequence":"additional","affiliation":[{"name":"Department of Neurology and Neurosurgery, UMC Utrecht Brain Center University Medical Center Utrecht, Utrecht University  Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"W. Ludo","family":"van der Pol","sequence":"additional","affiliation":[{"name":"Department of Neurology and Neurosurgery, UMC Utrecht Brain Center University Medical Center Utrecht, Utrecht University  Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jan Willem","family":"Gorter","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation, Physical Therapy Science &amp; Sports University Medical Center Utrecht, Wilhelmina Children's Hospital  Utrecht The Netherlands"},{"name":"Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center University Medical Center Utrecht, and De Hoogstraat Rehabilitation  Utrecht The Netherlands"},{"name":"CanChild, Department of Pediatrics McMaster university  Hamilton Ontario Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marjolijn","family":"Ketelaar","sequence":"additional","affiliation":[{"name":"Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center University Medical Center Utrecht, and De Hoogstraat Rehabilitation  Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,4,26]]},"reference":[{"key":"e_1_2_11_2_1","unstructured":"Arim R. Findlay L. &Kohen D.(2020).The impact of the COVID\u201019 pandemic on Canadian families of children with disabilities. Data to Insights for a Better Canada Catalogue no. 45280001.https:\/\/www150.statcan.gc.ca\/n1\/pub\/45-28-0001\/2020001\/article\/00066-eng.htm"},{"issue":"9","key":"e_1_2_11_3_1","first-page":"1689","article-title":"Thematic analysis revised","volume":"53","author":"Braun V.","year":"2019","journal-title":"Journal of Chemical Information and Modeling"},{"key":"e_1_2_11_4_1","unstructured":"Cacioppo M. Bouvier S. Bailly R. Houx L. Varengue R. Chatelin A. Vagnoni J. &Vuillerot C.(2020).Since January 2020 Elsevier has created a COVID\u201019 resource centre with free information in English and Mandarin on the novel coronavirus COVID\u2010 19. The COVID\u201019 resource centre is hosted on Elsevier Connect the company' s public news and information. 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