• Cristina Garcia-Bravo, Domingo Palacios-Ceña, Ángel Aledo-Serrano, Javier Güeita-Rodríguez, Juan Francisco Velarde-García, Juan Nicolas Cuenca-Zaldivar, Romain Marconnot, María Cristina Alonso-Blanco, Jorge Pérez-Corrales, and Carmen Jimenez-Antona.
• 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.
• Ann. Med. 2025 Dec 1; 57 (1): 24467022446702.

PurposeThis study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.Materials And MethodsA descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with DEEs caused by SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included. Data collection was based on in-depth interviews and researchers' field notes. An inductive thematic analysis was performed.ResultsFive themes emerged: (a) the diagnostic process, which describes the path from the time parents recognize the first symptoms until diagnostic confirmation is obtained; (b) the relationship with health professionals during the search for a diagnosis, which describes how the entire process is conditioned by the relationships established; (c) the world of disability, revealing how the disease and disability impact the life of the parents; (d) living day to day, the parents continuously change their plans in anticipation of the onset of a seizure; (e) the disease progression, a cause of great concern in the parents.ConclusionsOur results show the need to develop recovery programs that integrate health and social interventions to support parents of children with DEE in the process of diagnosis and disease management.

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