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Živčno-mišične bolezni ne vplivajo zgolj na telesno, temveč tudi na kognitivno, čustveno, vedenjsko in socialno funkcioniranje posameznika. Telesnim simptomom bolezni so pogosto pridruženi kognitivni primanjkljaji, učne težave, nevrorazvojne motnje, čustvene in vedenjske težave ter primanjkljaji prilagoditvenih spretnosti. Zanimalo nas je, v kolikšni meri se slovenski otroci in mladostniki z različnimi oblikami živčno-mišičnih bolezni soočajo s primanjkljaji prilagoditvenih spretnosti ter s čustvenimi in vedenjskimi težavami. V raziskavi smo primerjali 50 otrok in mladostnikov z živčno-mišičnimi boleznimi, deljenih v pet skupin glede na najpogostejše oblike bolezni, s 50 zdravimi otroki in mladostniki. Za ugotavljanje prilagoditvenih spretnosti je bilo v primerjalno skupino vključenih 248 dodatnih otrok in mladostnikov iz standardizacijske študije. Za ocenjevanje prilagoditvenih spretnosti smo uporabili Sistem za ocenjevanje prilagoditvenega vedenja (ABAS-3), za ocenjevanje čustvenih in vedenjskih težav pa Ocenjevalno lestvico vedenja za otroke (CBCL). Ugotovili smo primanjkljaje prilagoditvenih spretnosti na različnih področjih funkcioniranja pri otrocih in mladostnikih z miotonično distrofijo, Duchennovo mišično distrofijo in Beckerjevo mišično distrofijo. Pri otrocih in mladostnikih s spinalno mišično atrofijo in drugimi oblikami živčno-mišičnih bolezni so bili primanjkljaji ugotovljeni le na področjih, kjer so zaradi gibalne oviranosti odvisni od pomoči drugih. Povišanih čustvenih in vedenjskih težav v primerjavi z zdravimi otroki nismo ugotovili, z izjemo povišanih socialnih težav pri otrocih in mladostnikih z Duchennovo mišično distofijo in miotonično distrofijo. Vendar število tistih z mejno ali klinično povišanimi težavami opozarja na to, da so čustvene in vedenjske težave, predvsem težave ponotranjenja, tiste, na katere moramo biti pri delu s to populacijo pozorni. Ugotavljamo raznolikost pridruženih psihosocialnih težav pri otrocih in mladostnikih z živčno-mišičnimi boleznimi, ki so odvisne od specifične diagnoze in številnih drugih dejavnikov. Vlogo psihologa prepoznavamo kot pomembno pri spoprijemanju z bremenom psihosocialnih težav otrok in mladostnikov, ki ga prinašajo živčno-mišične bolezni in s tem vplivajo na nižjo kakovost življenja ter težje prilagajanje na bolezen. Neuromuscular diseases do not only affect a person’s physical, but also cognitive, emotional, behavioral and social functioning. Besides the muscle weakness, which is the main characteristic of the diseases, cognitive deficits, learning difficulties, neurodevelopmental disorders, emotional and behavioral problems and poor adaptive skills are often recognized in children and adolescents with neuromuscular diseases. Our goal was to investigate two psychosocial aspects of the diseases in Slovenian children and adolescents with neuromuscular diseases: adaptive skills, and emotional and behavioral problems. We compared 50 children and adolescents with different neuromuscular diseases, which we categorized into five groups of common neuromuscular diseases, with 50 healthy children and adolescents. For studying adaptive skills, we also included 248 children and adolescents from a normative study on adaptive skills. Adaptive skills were measured with the Adaptive Behavior Assessment System, Third Edition (ABAS-3), and emotional and behavioral problems were measured with the Child Behavior Checklist (CBCL). We found poor adaptive skills in children and adolescents with myotonic dystrophy, Duchenne muscular dystrophy and Becker muscular dystrophy in different areas of functioning. Those with spinal muscular atrophy showed poor adaptive skills only in domains where they need assistance due to their physical disability. In comparison with healthy peers, we did not find higher expressed emotional and behavioral problems in children and adolescents with neuromuscular diseases, except for higher social problems in groups with Duchenne muscular dystrophy and myotonic dystrophy. Yet the number of those in the borderline or clinical range suggests it is important to asses these problems, especially internalizing problems when working with this population. Our conclusions imply variety of comorbid psychosocial problems in children and adolescents with different neuromuscular diseases, based on specific diagnosis and many other contributing factors. To optimize psychosocial functioning and quality of life of children and adolescents with neuromuscular diseases, we recognize psychological support as very important. |
