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Η κλινική συμπτωματολογία και η ψυχοκοινωνική υποστήριξη των πασχόντων με αλμπινισμό

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Γεώργιος Μουτσινάς, Αθηνά Ντζιαβίδα
Γεώργιος Μουτσινάς, Αθηνά Ντζιαβίδα

Περίληψη


Στην παρούσα εργασία, μέσω επικαιροποιημένης βιβλιογραφικής ανασκόπησης, περιγράφεται η συμπτωματολογία των πασχόντων με αλμπινισμό και η ψυχοκοινωνική τους υποστήριξη, σε ανταπόκριση στις διατυπωμένες ανάγκες συναφούς ενημέρωσης των εκπαιδευτικών. Ως μία σπάνια, γενετικά κληρονομούμενη πάθηση, στον αλμπινισμό παρατηρείται ποικίλου εύρους υποχρωματισμός της τριχοφυΐας, του δέρματος και των ματιών των ατόμων. Στα κλινικά χαρακτηριστικά του, περιλαμβάνονται πολλαπλά συγγενή προβλήματα όρασης και οφθαλμικές αλλοιώσεις, ενώ το νευροψυχολογικό του προφίλ πλειοψηφικά διακρίνεται από τυπικά επίπεδα νοημοσύνης, αναγνωστικά ελλείμματα, καθώς και από δυσχέρειες των επιτελικών και αισθητικο-αντιληπτικών λειτουργιών της μνήμης, της προσοχής, αλλά και της αδρής ή / και λεπτής κινητικότητας. Ακόμη, η πάθηση διέπεται από ένα σύνολο κοινωνικο-συναισθηματικών και προσαρμοστικών δυσκολιών της διαπροσωπικής αλληλεπίδρασης, καθώς και κλινικής ψυχοπαθολογίας. Αντισταθμίζοντας και το ανεπαρκές ευρύτερο κοινωνικοπολιτισμικό πλαίσιο των πασχόντων, νηπιακής έως εφηβικής ηλικίας, αλλά και ενηλίκων, έχουν υλοποιηθεί συγκεκριμένες εξατομικευμένες ή ομαδικές, διεπιστημονικές και μη, ψυχοκοινωνικές παρεμβάσεις, ενίοτε αυξημένης κοινωνικής εγκυρότητας. Στις προσεγγίσεις, συνδυάστηκαν δράσεις ψυχοεκπαίδευσης, συμβουλευτικής, προπονητικής, αθλητισμού, μουσικοθεραπείας, λογοθεραπείας και εργοθεραπείας, σε σχολικό, εξωσχολικό, κατ’ οίκον, ή κλινικό επίπεδο. Πλειοψηφικά, διαπιστώθηκε βελτίωση των σκοπούμενων ενδοατομικών ελλειμμάτων, των διαπροσωπικών και συμπεριφορικών δεξιοτήτων, όπως και της ψυχιατρικής συννοσηρότητας των συμμετεχόντων. Εντούτοις, διευθετώντας τους επιμέρους μεθοδολογικούς περιορισμούς των διεξαχθέντων παρεμβατικών προγραμμάτων και παράλληλα προσαρμόζοντάς τα, ανάλογα με την ηλικία και τη λειτουργικότητα των πασχόντων, διατυπώνονται σχετικές προτάσεις μελλοντικής έρευνας, στοχεύοντας στην ολιστική και ενταξιακή υποστήριξη των ατόμων.


Λέξεις κλειδιά


Αλμπινισμός; κλινικά χαρακτηριστικά; νευροψυχολογικό προφίλ; προβλήματα συμπεριφοράς; ψυχοκοινωνικές παρεμβάσεις

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DOI: http://dx.doi.org/10.12681/jret.10406

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