Psychological and care impact of the daily use of a pediatric gait exoskeleton in children with spinal muscular atrophy
- Autores: Elena Garcés Castellote
- Directores de la Tesis: Elena García Armada (dir. tes.), Juana Cristina Francisco del Rey (codir. tes.), Iván Sánchez Iglesias (codir. tes.)
- Lectura: En la Universidad de Alcalá ( España ) en 2023
- Idioma: inglés
- Tribunal Calificador de la Tesis: Víctor Pérez Samaniego (presid.), Iván María Ortega Deballón (secret.), María Pilar Almansa Martínez (voc.)
- Programa de doctorado: Programa de Doctorado en Ciencias de la Salud por la Universidad de Alcalá
- Materias:
- Enlaces
- Resumen
- español
Introducción: La Atrofia Muscular Espinal Tipo II, es una enfermedad neurodegenerativa de origen genético que cursa con debilidad muscular y provoca deterioro motor e incapacidad para caminar en los niños. Se relaciona con graves problemas respiratorios, musculoesqueléticos, gastrointestinales y otros de salud y cuidado. Los exoesqueletos robóticos de miembros inferiores son dispositivos médicos que ayudan a la marcha de pacientes que no pueden caminar. Nuestro objetivo fue evaluar el impacto en la dimensión psicológica y de autocuidado derivado del uso del exoesqueleto ATLAS en el hogar en niños con Atrofia Muscular Espinal Tipo II.
Metodología: tres niños con Atrofia Muscular Espinal Tipo II utilizaron el exoesqueleto en casa cinco días a la semana durante un período de dos meses para caminar y realizar actividades. Se realizó una evaluación del autocuidado de enfermería antes y durante el uso del dispositivo para evaluar los cambios en los resultados del autocuidado y los diagnósticos de enfermería. Se realizaron entrevistas en profundidad y semiestructuradas, además de la observación durante las sesiones, para evaluar el impacto de la experiencia en la dimensión psicológica de los participantes.
Resultados: el uso del exoesqueleto produjo cambios en los condicionantes básicos de los niños y una mejora en los organismos de autocuidado. También aparecieron nuevas demandas de autocuidado. Tres de los diez diagnósticos de enfermería fueron resueltos. Asimismo, los niños mostraron una buena tolerancia a la actividad además de una mejora funcional evaluada en el tercer participante. Los niños y los cuidadores principales valoraron la experiencia como positiva y significativa. Los niños tenían una mayoría de emociones positivas, y se incrementó su autonomía y comportamiento social y exploratorio.
Conclusiones: la tecnología del exoesqueleto podría considerarse como un nuevo recurso para el cuidado de niños con enfermedades neuromusculares. Su uso tuvo un impacto positivo tanto en las variables de autocuidado como en la dimensión psicológica de tres niños con atrofia muscular espinal tipo II. Aunque este estudio aporta ya evidencia, más estudios sobre el tema aportarían un mayor conocimiento.
- English
Introduction: spinal muscular atrophy is a sever neurodegenerative disease that affects the survival of the motor neurons in the spinal cord. It causes the deterioration of muscles and a progressive generalized muscle weakness. It has an incidence between 1/6,000 to 1/10,000 births. The children that suffer from the Type II of the disease can seat unaided but cannot walk. the objectives of the care of these children are based in the prevention and treatment of the primary and secondary effects of the muscle weakness. And it is a cause of dependency in the pediatric population. Gait robotic exoskeletons are a new technology aimed for the gait assistance and rehabilitation of patients with gait problems. ATLAS exoskeleton which is the first overground gait exoskeleton developed for children with neuromuscular and neurological disease. More scientific studies are being done related to the physical, functional and rehabilitation effects of this technology but there is a lack of evidence regarding the effects on self-care from the nursing point of view and the psychological dimension.
Objective: to assess the psychological and self-care impact derived from the daily use of the ATLAS 2025 pediatric exoskeleton, in three children with spinal muscular atrophy Type II at their homes.
Method: three children with spinal muscular atrophy used the ATLAS 2025 exoskeleton at their homes five days a week for a period of two months. In order to assess the self-care impact, two nursing assessments based in the Self-care Nursing Deficit Theory by D. Orem were performed before and after the period of use of the exoskeleton to the children. Changes in basic conditioning factors, self-care demands, self-care agencies and deficits were evaluated, aside from changes in nursing diagnostics. In order to assess the impact on the psychological dimension, in-depth and semi-structured phenomenological interviews were performed both to the children and their main caregivers to get a detailed description of the experience and its psychological meaning. Also, data took by field notes during observations performed during some sessions of use at the children’s home. Data was analysed using thematic and Giorgi analysis.
Results: the use of the exoskeleton produce changes in the basic conditioning factors of the children. Three of the 10 nursing diagnostics exposed in the previous nursing assessment were resolved: impair physical mobility, impair social interaction and helplessness. Increased muscle strength and a greater agency to clear the respiratory secretions has been observed. A new agency related to the use of the robotic device has raised and has been propose as new concept in self-care, the “Robotic Self-care Agency”. Also, a good activity tolerance and physical performance was exposed in the three children while using the exoskeleton aside from a functional improvement assessed in the third participant. No serious adverse events were recorded, but one mild adverse event caused the first participant to leave the study early.
Regarding the psychological impact of the experience, the children and the main care givers valued the experience as positive and meaningful. The children had a majority of positive emotions, and their autonomy and social and exploratory behaviour was increased.
Conclusions: the exoskeleton technology could be considered as a new resource for the care of children with neuromuscular diseases. It’s use had positive impact in both the self-care variables and the psychological dimension of three children with spinal muscular atrophy Type II. Changes in basic conditioning factors and new self-care demands related to the use of the device must be taken into consideration by nurses when assessing patients using this technology. Although this research already provides evidence of the impact generated, as future work it is proposed to expand this research considering a larger sample size.
- español
