Associació de la Paràlisi Cerebral

Este artículo presenta el desarrollo y validación de un dispositivo sensorizado y portátil diseñado para la rehabilitación del miembro superior mediante el uso de serious-games. El sistema integra sensores inerciales (IMU) y de electromiografía superficial (EMG) para registrar y analizar la cinemática y la actividad muscular del brazo. Compuesto por un módulo portátil (chaleco con sensores), un módulo central (Raspberry Pi y cámara) y un módulo software, permite realizar terapias tanto en entornos clínicos como domiciliarios, promoviendo la autonomía del paciente. La interacción se realiza a través de juegos serios con realidad aumentada, diseñados para mantener la motivación del usuario. Las pruebas de validación funcional y con pacientes de una asociación de daño cerebral confirman la viabilidad del sistema, aunque se identifican oportunidades de mejora en los sensores EMG y en aspectos ergon´omicos y visuales. La propuesta contribuye a una rehabilitación más accesible, personalizada y efectiva.

The quality of life (QoL) of families caring for children with neurodevelopmental disorders is influenced by the severity of the disorder, family support, and access to specialized services. Parental stress also affects family dynamics and QoL due to the additional demands of care, particularly focusing on the management of activities of daily living (ADLs). This study aimed to analyze the relationship between parents' QoL and stress, involving 46 parents of children aged 3 to 12 years with neurodevelopmental disorders, while also examining the relationship with the performance in ADLs, sensory processing, and executive functioning of children with neurodevelopmental disorders. Significant positive associations were found between factor 1 of the "Assessment of Sensory Processing and Executive Functions in Childhood" (EPYFEI) with perceived stress (r=0.401, p≤0.01), and parents physical component summary (PCS) (r=0.330, p≤0.05). Significant negative correlations were observed between ADL performance and parents' physical component summary (PCS) of SF-12 (r=-0.356, p≤0.05). Conversely, a significant negative association was found between factors 1 and 4 of the EPYFEI and ADL performance (r=-0.392, p≤0.01 and r=-0.660, p≤0.01). Furthermore, a significant positive association was found between parents' perceived stress and the PCS of SF-12 (r=0.471, p≤0.01), and a negative association between perceived stress and parents' mental component summary (MCS) (r=-0.300, p≤0.05). The study revealed that QoL and parental stress are closely linked to functioning in ADLs and executive functioning of children with neurodevelopmental disorders. Interventions to strengthen these areas might improve parents' well-being and QoL. Additionally, it underscores the importance of teaching these parents stress management strategies.

Resumen Introducción La sexualidad se identifica como una actividad más de la vida diaria. Por ello, se considera necesario dar visibilidad a todas las sexualidades para promover que la sexualidad sea más inclusiva y que no quede en el olvido. Objetivos El objetivo general de este estudio es analizar las perspectivas de personas con problemas neurológicos, sus familias y profesionales que participan en su proceso de atención, sobre la importancia que le dan a la sexualidad y las necesidades o desafíos que pueden surgir en el abordaje de la actividad sexual. Metodología Se trata de una investigación cualitativa, que sigue un enfoque fenomenológico. Participaron un total de 17 personas (7 con problemas neurológicos, 4 familiares y 6 profesionales), a quienes se les realizó una entrevista individual semiestructurada. Resultados Tras el análisis de los datos, surgieron siete categorías, que tratan de explicar el fenómeno de estudio: “Múltiples sexualidades”, “Infantilización y sobreprotección familiar”, “Incomodidad y tema tabú”, “Falta de información y alternativas existentes”, “Demanda existente, pero desatendida”, “Falta de tiempo a solas y de espacios y medios adecuados” y “Asistencia sexual, una alternativa para desarrollar la sexualidad”. Conclusiones La sexualidad tiene diferentes perspectivas y depende de cada persona con una condición de salud neurológica, sus familias y profesionales. En general, la sexualidad en la vida cotidiana es muy importante, pero cada persona la valora de manera diferente.

Proprioception has long been linked with emotional dysregulation in neurotypical adults. Neuropediatric disorders such as autism spectrum disorder (ASD) and cerebral palsy (CP) are distinct entities and yet both present with deficits and challenges in sensory processing and the regulation of emotions. This study aimed to explore the relationship between proprioception and emotional-social performance in children and to compare proprioception and emotional-social performance in different underlying neurodevelopmental conditions. For this purpose, this cross-sectional study included 42 children with ASD, 34 children with CP and 50 typically developing peers. Proprioceptive acuity, proprioceptive reactive behavior as well as emotion regulation and social responsiveness were assessed. The results show a significant correlation between proprioceptive deficits and emotional difficulties in this pediatric sample, with distinct proprioceptive impairment patterns according to the underlying neurological disorder. Children with CP showed significant emotional knowledge deficits, while children with ASD predominantly showed challenges in social responsiveness. These data thus suggest a differentiated impact of proprioception on emotional-social performance in neurodevelopmental disorders and highlight proprioception as a potential therapeutic target for balancing emotion regulation in children with neurodevelopmental conditions.

This document analyzes a survey conducted in three geographical areas in Spain, focusing on centers for individuals with cerebral palsy (CP). The study aims to determine the adherence rate to recommended physical activity guidelines, assess if there is a decline in interest in physical activity over time, identify the stage at which this decline occurs, and explore potential mechanisms, tools, or strategies to sustain long-term engagement in regular physical activity for this population. The 36-item questionnaire comprises multiple-choice, open-ended, and Likert scale-type questions. Data were collected on physical activity frequency and duration, daily living activities, and demographics. Statistical analysis identified patterns and relationships between variables. Findings reveal that only a 17.6% meets the World Health Organization (WHO) recommendations regarding regular physical activity (RPA), decreasing in frequency or number of days a week, (3.7 d/w to 2.9 d/w; p < 0.01) and duration (50.5 min/d to 45.2 min/d; p < 0.001) with age, especially for those with higher Gross Motor Function Classification System (GMFCS) mobility levels. Obesity slightly correlates with session duration ( = −0.207; p < 0.05), not mobility limitations. Gender has no significant impact on mobility, communication, or physical activity, while age affects variables such as body mass index (BMI) and engagement (p < 0.01). A substantial proportion follows regular physical activities based on health professionals’ advice, with interest decreasing with age. To improve adherence, focusing on sports-oriented goals, group sessions, and games is recommended. These findings emphasize the importance of personalized programs, particularly for older individuals and those with greater mobility limitations.

El presente artículo destaca el uso de la lengua de señas ecuatoriana (LSEC) como un sistema alternativo de comunicación en estudiantes con parálisis cerebral infantil (PCI). En este marco, se comparte el itinerario para implementar un manual básico de esta lengua y los resultados obtenidos en el contexto de una escuela especializada. Metodológicamente, se adoptó un paradigma interpretativo con un enfoque cualitativo para comprender el problema de comunicación de un estudiante con PCI, sin discapacidad auditiva, pero con dificultades en la producción y articulación precisa de sonidos. Se utilizó, además, un diseño descriptivo con el método de estudio de caso único y se emplearon diarios de campo y guías de entrevista y observación. Como resultado, se elaboró un manual básico de LSEC, dirigido a los miembros del contexto escolar, que incluye señas básicas para saludos, necesidades y emociones. Se concluye que la lengua de señas es un sistema que facilita la inclusión plena de todos los niños y niñas con PCI en el entorno escolar, por lo que es esencial que los docentes dominen las señas básicas relacionadas para superar barreras comunicativas.

Cerebral palsy (CP) is an impacting chronic condition. Concomitant comorbidities such as pain and speech inability may further affect parents’ perception of the pathology impact in the family quality of life and the provided care. The objective of this cross-sectional descriptive correlational study was to compare parental reports on family impact and healthcare satisfaction in children with CP with and without chronic pain and with and without speech ability. Parents of 59 children with CP (age range = 4–18 years) completed several questions about pain and speech ability and two modules of the Pediatric Quality of Life Measurement Model: The PedsQLTM 2.0 Family Impact Module and the PedsQLTM Healthcare Satisfaction Generic Module. Our findings revealed that children’s pain slightly impacted family physical health, social health and worry. In children without pain, speech inability increased the perceived health impact. Parents’ healthcare satisfaction was barely affected by pain or speech inability, both increasing parents’ satisfaction in the professional technical skills and inclusion of family domains on the care plan. In conclusion, pain and speech inability in children with CP can impact family health but not healthcare satisfaction. Regular assessment and intervention in family health is essential for the design of family-centred programs for children with CP.