REGISTRIES, CARE, QUALITY OF LIFE, MANAGEMENT OF NMD: P.338 The ``Hospital goes to School'': a psychoeducational program to raise awareness about neuromuscular disorders in schools to prevent social exclusion

Abstract

We explored children with neuromuscular disorders (NMD), their teachers’ and classmates’ experiences about the psychoeducational program on NMD, along with their perceptions on emphatic behavior. Six male patients, from our neuromuscular service, their schoolteachers and classmates from Catalonia-Spain participated in the program during school season 2018-2019; participants were in 1st, 2nd, 3rd and 5th grade of primary school. Qualitative thematic analysis method was performed over semi-structured interviews with teachers and surveys for children with neuromuscular disorders (NMD) and their classmates. Quantitative analysis after psychoeducational intervention program was performed in a Non-Equivalent Groups Design of pre-posttest measurement of the empathy variable in patients and their classmates. Data were analyzed with the T-student test. Four themes reflect teachers and children's needs regarding NMD: ```Difficulties in talking about the disease'', ``giving/receiving help'', ``managing differences'' and ``level of knowledge about the disease''. Regarding empathy, no significant differences between gender groups were found in 1st, 2nd and 3rd grade, but in the older age group (5th grade) we found significant differences according to gender, in which girls showed higher levels of empathic concern than did boys; this is consistent with previous research findings explaining differences as a result of cognitive development, suggesting that differences in the time maturation process plays a role in boys’ development of empathic concern. This multi-level intervention enhances school context understanding of the NMD facilitating social integration of the affected child. Empathy is a social skill developed at school-age, requiring the need for longitudinal interventions for better promotion of social integration of NMD patients in their schools.