{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T13:14:26Z","timestamp":1788268466545,"version":"build-2803163510"},"reference-count":71,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,6,10]],"date-time":"2026-06-10T00:00:00Z","timestamp":1781049600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,6,10]],"date-time":"2026-06-10T00:00:00Z","timestamp":1781049600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Nemaline myopathy (NM) is a rare childhood\u2010onset neuromuscular disorder requiring long\u2010term home care. Its progression places a significant emotional and physical burden on parents, especially without formal support.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A descriptive phenomenological study was conducted with 17 parents of children diagnosed with nemaline myopathy in Spain. Data were collected through semi\u2010structured interviews, transcribed verbatim and analysed using Giorgi's thematic analysis method.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Four central themes emerged: (1) adapting to the unpredictable changes of the disease, in which parents described the need for continuous adaptation to evolving clinical demands; (2) living under continuous caregiving demands, reflecting the temporal, physical and emotional intensity of uninterrupted caregiving; (3) relief and uncertainty in shared care, where formal support services were experienced as essential yet unstable; and (4) when caregiving reorganizes family life, illustrating how caregiving responsibilities progressively reshaped parents' work, social participation and daily routines.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Caring for a child with NM profoundly transforms family life. This study highlights the need for coordinated and parent\u2010centered support to ensure sustainable care and protect parents' well\u2010being in their role as caregivers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/cch.70301","type":"journal-article","created":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T00:29:21Z","timestamp":1781137761000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Parents' Perspectives on Home Care for Children With Nemaline Myopathy: A Qualitative Study"],"prefix":"10.1111","volume":"52","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2754-8685","authenticated-orcid":false,"given":"Ra\u00fal Merch\u00e1n","family":"Arjona","sequence":"first","affiliation":[{"name":"Red Cross Nursing School, Research Group in Social Health Care Needs for the Population at Risk of Exclusion, School of Nursing, Red Cross University Universidad Aut\u00f3noma de Madrid  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5801-4857","authenticated-orcid":false,"given":"Juan Francisco","family":"Velarde\u2010Garc\u00eda","sequence":"additional","affiliation":[{"name":"Red Cross Nursing School, Research Group in Social Health Care Needs for the Population at Risk of Exclusion, School of Nursing, Red Cross University Universidad Aut\u00f3noma de Madrid  Madrid Spain"},{"name":"Research Nursing Group of Instituto de Investigaci\u00f3n Sanitaria Gregorio Mara\u00f1\u00f3n (IiSGM)  Madrid Spain"},{"name":"Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&amp;QRinHS) Universidad Rey Juan Carlos  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0350-2044","authenticated-orcid":false,"given":"Enrique Pacheco","family":"del Cerro","sequence":"additional","affiliation":[{"name":"Department of Nursing, Faculty of Nursing, Physiotherapy and Podology University Complutense of Madrid  Madrid Spain"},{"name":"Hospital Cl\u00ednico San Carlos  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0486-3164","authenticated-orcid":false,"given":"Alfonso Meneses","family":"Monroy","sequence":"additional","affiliation":[{"name":"Department of Nursing, Faculty of Nursing, Physiotherapy and Podology University Complutense of Madrid  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,6,10]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph20064732"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201910\u2010780OC"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000011458"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/1609406919874596"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10826\u2010024\u201002790\u20106"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12911\u2010019\u20100911\u2010z"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/nicc.12405"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.3390\/bs13120956"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023\u2010022\u201002530\u20103"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40359\u2010024\u201002070\u20104"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.spen.2019.03.019"},{"key":"e_1_2_13_13_1","volume-title":"Qualitative Research for Occupational and Physical Therapists: A Practical Guide","author":"Carpenter C.","year":"2008"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105319834678"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2021.01.013"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/08830738221096316"},{"key":"e_1_2_13_17_1","unstructured":"Consejo General de Enfermer\u00eda.2021. \u201cMarco de competencias de las\/os enfermeras\/os gestoras\/es de casos en la atenci\u00f3n al paciente con problemas de salud cr\u00f3nicos con complejidad.\u201dhttps:\/\/www.consejogeneralenfermeria.org\/profesion\/guias\u2010clinicas\/send\/70\u2010competencias\u2010enfermeras\/1522\u2010competencias\u2010enfermeras\u2010gestoras\u2010paciente\u2010complejidad\u201014\u201007\u20102021."},{"key":"e_1_2_13_18_1","volume-title":"Qualitative Inquiry and Research Design: Choosing Among Five Approaches","author":"Creswell J. 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