Arch Argent Pediatr. 2026 Sep 17:e202611114. doi: 10.5546/aap.2026-11114.eng. Online ahead of print.
ABSTRACT
Introduction. Spinal muscular atrophy (SMA) is a genetic neuromuscular disorder that places a heavy physical, emotional, and social burden on caregivers. Structured therapeutic education is a key strategy for strengthening their role in daily support and care, although there is little local evidence regarding its impact. Population and methods. Descriptive observational study with a mixed-methods approach. Four sessions of interdisciplinary educational workshops were held between 2024 and 2025 at a high-complexity university hospital in the Autonomous City of Buenos Aires. Sociodemographic variables were collected via a registration form, and satisfaction was assessed using a Likert scale (1-5) and open-ended questions, which were analyzed using inductive thematic coding. Results. A total of 49 caregivers participated; 75.5% were women, and 79.6% were engaged in paid work. The majority were not affiliated with the institution (79.6%). The satisfaction survey was completed by 14 participants (28.6%), who gave high scores across all dimensions (averages ranging from 4.71 to 5.00). The qualitative analysis identified three key themes: peer exchange, technical empowerment, and appreciation of the professional team. Participants highlighted the need for a longer workshop and content on emerging therapies. Conclusion. Interdisciplinary educational workshops proved to be a feasible, well-received intervention that had a positive impact on the acquisition of practical skills, emotional support, and peer interaction. Their implementation could be useful in the comprehensive care of patients with neuromuscular diseases and other complex chronic conditions in pediatrics.
PMID:42735214 | DOI:10.5546/aap.2026-11114.eng
