The eHealth well-being service for patients with SMA and other neuromuscular disorders during the COVID-19 emergency

The aim of the Wellbeing and Emotional Activities (WEA) project was to sustain families, to reduce the impact of COVID-19 and to create web meetings using Microsoft Teams during which children with muscular dystrophies could interact, have fun and learn. The goals of this study were to compare the perception of service users, both from the point of view of parents and children, measured with a users' satisfaction questionnaire, and to correlate if the level of satisfaction of the children could be correlated to trait self-concepts of the Piers-Harris Children's Self-Concept Scale. Eleven children with neuromuscular disorders participated in the project. The WEA program included 12 web meetings, consisting of 1 hour, 3 times a week over a 1-month period. It included game activities aimed at enhancing cognitive functions, promoting critical thinking and managing emotions. Results indicated that both children and parents perceived the same level of satisfaction. Correlations between children's satisfaction in life and the self-concept scale were found. This study highlights the benefits and disadvantages of the use of a WEA web-based program from the service users' perspective.