{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T19:29:14Z","timestamp":1780082954646,"version":"3.54.0"},"reference-count":62,"publisher":"Public Library of Science (PLoS)","issue":"9","license":[{"start":{"date-parts":[[2023,9,8]],"date-time":"2023-09-08T00:00:00Z","timestamp":1694131200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\"><jats:title>Background<\/jats:title><jats:p>Within the field of childhood neurodisability, the tendency in the study of needs has been to categorize them based on ability (motor, verbal, cognitive). However, current perspectives such as F-words, family-centered practices, or the principles of family empowerment, lead the researcher to ask: What are these needs according to the stage of development?<\/jats:p><\/jats:sec><jats:sec id=\"sec002\"><jats:title>Methods and analysis<\/jats:title><jats:p>A descriptive qualitative study will be carried out. Several methods will be followed to ensure the reliability and validity of the results, and the Standards for Reporting Qualitative Research and the Consolidated criteria for reporting qualitative research checklists will also be used to guide the project. Data collection is sought from three main sources: Focus groups (detection of needs), a survey to collect sociodemographic and clinical data necessary to obtain an overview of the context of the participants, and a survey to find out the level of satisfaction with this initiative.<\/jats:p><\/jats:sec><jats:sec id=\"sec003\"><jats:title>Discussion<\/jats:title><jats:p>The results expected to be obtained after this study will respond to the main needs of families with childhood neurodisability, based on age groups and covering the whole territory of the Spanish population. Thanks to these detected needs, it will be possible to design future lines of work to improve the design of family-centered practices and increase the empowerment of families. The intention is to detect needs by stage of development, which can be categorized within the F-words framework, showing families and professionals a clear picture of the needs of this population.<\/jats:p><\/jats:sec>","DOI":"10.1371\/journal.pone.0291148","type":"journal-article","created":{"date-parts":[[2023,9,8]],"date-time":"2023-09-08T17:30:26Z","timestamp":1694194226000},"page":"e0291148","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":6,"title":["Identification of the needs of children with neurodisability and their families at different stages of development: A qualitative study protocol"],"prefix":"10.1371","volume":"18","author":[{"given":"Patricia","family":"Rold\u00e1n-P\u00e9rez","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marta","family":"San Miguel-Pagola","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"V\u00edctor","family":"Dom\u00e9nech-Garc\u00eda","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4750-9077","authenticated-orcid":true,"given":"Pablo","family":"Bellosta-L\u00f3pez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4932-3284","authenticated-orcid":true,"given":"Almudena","family":"Buesa-Est\u00e9llez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2023,9,8]]},"reference":[{"key":"pone.0291148.ref001","doi-asserted-by":"crossref","first-page":"107","DOI":"10.12688\/hrbopenres.13309.1","article-title":"Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review.","volume":"4","author":"E Meehan","year":"2021","journal-title":"HRB Open Res"},{"key":"pone.0291148.ref002","doi-asserted-by":"crossref","first-page":"226","DOI":"10.3389\/fpubh.2016.00226","article-title":"Perspectives on \"Disease\" and \"Disability\" in Child Health: The Case of Childhood Neurodisability.","volume":"4","author":"AR Miller","year":"2016","journal-title":"Front Public Health."},{"issue":"11","key":"pone.0291148.ref003","doi-asserted-by":"crossref","first-page":"1101","DOI":"10.1111\/dmcn.13959","article-title":"Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review.","volume":"60","author":"B Adair","year":"2018","journal-title":"Dev Med Child Neurol"},{"issue":"6","key":"pone.0291148.ref004","doi-asserted-by":"crossref","first-page":"787","DOI":"10.1111\/cch.12097","article-title":"Parents\u2019 experiences with physical and occupational therapy for their young child with cerebral palsy: a mixed studies review.","volume":"40","author":"AJ Kruijsen-Terpstra","year":"2014","journal-title":"Child Care Health Dev"},{"issue":"6","key":"pone.0291148.ref005","doi-asserted-by":"crossref","first-page":"884","DOI":"10.1080\/09638288.2019.1643419","article-title":"Use of the International Classification of Functioning, Disability and Health to support goal-setting practices in pediatric rehabilitation: a rapid review of the literature.","volume":"43","author":"L Nguyen","year":"2021","journal-title":"Disability and rehabilitation."},{"issue":"1","key":"pone.0291148.ref006","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1016\/j.spen.2004.01.009","article-title":"Family-centered service for children with cerebral palsy and their families: a review of the literature","volume":"11","author":"S King","year":"2004","journal-title":"Semin Pediatr Neurol"},{"issue":"2","key":"pone.0291148.ref007","doi-asserted-by":"crossref","first-page":"130","DOI":"10.1080\/02739615.2011.564568","article-title":"Determinants of Needs of Families of Children and Youth With Cerebral Palsy.","volume":"40","author":"NA Almasri","year":"2011","journal-title":"Child Health Care."},{"issue":"2","key":"pone.0291148.ref008","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1037\/a0019473","article-title":"Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities.","volume":"55","author":"JA Resch","year":"2010","journal-title":"Rehabil Psychol"},{"key":"pone.0291148.ref009","volume-title":"International classification of functioning, disability, and health\u202f: children & youth version\u202f: ICF-CY.","author":"WHO","year":"2007"},{"key":"pone.0291148.ref010","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1016\/j.ridd.2017.11.003","article-title":"Using the ICF in transition research and practice? 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