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Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study.

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Title: Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study.
Authors: Garcia-Bravo C; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS) & Research Group in Evaluation and Assessment of Capacity, Functionality and Disability of Universidad Rey Juan Carlos (TO+IDI), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain., Palacios-Ceña D; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain., Aledo-Serrano Á; Epilepsy and Neurogenetics Program, Vithas Madrid La Milagrosa University Hospital, Vithas Hospital Group, Madrid, Spain., Güeita-Rodríguez J; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain., Velarde-García JF; Department of Nursing, Red Cross Nursing College, Madrid, Spain., Cuenca-Zaldivar JN; Department of Nursing and Physiotherapy, Universidad de Alcalá, Madrid, Spain., Marconnot R; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain., Alonso-Blanco MC; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain., Pérez-Corrales J; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain., Jimenez-Antona C; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.
Source: Annals of medicine [Ann Med] 2025 Dec; Vol. 57 (1), pp. 2446702. Date of Electronic Publication: 2024 Dec 28.
Publication Type: Journal Article
Journal Info: Publisher: Informa Healthcare Country of Publication: England NLM ID: 8906388 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1365-2060 (Electronic) Linking ISSN: 07853890 NLM ISO Abbreviation: Ann Med Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Real-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study.
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  Data: <searchLink fieldCode="AU" term="%22Garcia-Bravo+C%22">Garcia-Bravo C</searchLink>; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS) & Research Group in Evaluation and Assessment of Capacity, Functionality and Disability of Universidad Rey Juan Carlos (TO+IDI), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.<br /><searchLink fieldCode="AU" term="%22Palacios-Ceña+D%22">Palacios-Ceña D</searchLink>; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.<br /><searchLink fieldCode="AU" term="%22Aledo-Serrano+Á%22">Aledo-Serrano Á</searchLink>; Epilepsy and Neurogenetics Program, Vithas Madrid La Milagrosa University Hospital, Vithas Hospital Group, Madrid, Spain.<br /><searchLink fieldCode="AU" term="%22Güeita-Rodríguez+J%22">Güeita-Rodríguez J</searchLink>; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.<br /><searchLink fieldCode="AU" term="%22Velarde-García+JF%22">Velarde-García JF</searchLink>; Department of Nursing, Red Cross Nursing College, Madrid, Spain.<br /><searchLink fieldCode="AU" term="%22Cuenca-Zaldivar+JN%22">Cuenca-Zaldivar JN</searchLink>; Department of Nursing and Physiotherapy, Universidad de Alcalá, Madrid, Spain.<br /><searchLink fieldCode="AU" term="%22Marconnot+R%22">Marconnot R</searchLink>; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.<br /><searchLink fieldCode="AU" term="%22Alonso-Blanco+MC%22">Alonso-Blanco MC</searchLink>; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.<br /><searchLink fieldCode="AU" term="%22Pérez-Corrales+J%22">Pérez-Corrales J</searchLink>; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.<br /><searchLink fieldCode="AU" term="%22Jimenez-Antona+C%22">Jimenez-Antona C</searchLink>; Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.
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              Text: 2025 Dec
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