BACKGROUND: Epilepsy is one of the most common neurological conditions in paediatric populations and has a significant impact on the lives of those affected. In developed countries, it affects approximately 1 in 100 individuals. Globally, over 50 million people are living with epilepsy, and the condition can develop at any stage of life. Parents of children diagnosed with epilepsy often face considerable challenges in managing daily routines, schooling, and the emotional consequences that follow a diagnosis. In this context, the role of the nurse is essential in improving the quality of life for both the patient and their family by providing enhanced therapeutic education as well as emotional and psychological support. AIM: To explore the contribution that nurses can make in the educational and supportive processes aimed at families of children with epilepsy, with particular focus on the role of the Epilepsy Specialist Nurse (ESN). MATERIALS AND METHODS: A literature review was conducted using the following databases: PubMed, Google Scholar, and Scopus. Search strategies included the use of MeSH terms combined with Boolean operators (AND, OR). Additional sources such as LICE (Lega Italiana Contro l'Epilessia) and ILAE (International League Against Epilepsy) were also consulted. Inclusion criteria were: articles in English or Italian, full-text availability, population aged 0-18 years, and publications from the year 2000 onwards. RESULTS: The review of the scientific literature revealed several areas in which parents of children with epilepsy feel underprepared. These include understanding the condition itself, pharmacological and non-pharmacological treatments, first aid measures, and managing social and educational limitations. In various international contexts, the Epilepsy Specialist Nurse (ESN) appears to represent a valuable response to these needs. Thanks to their specialist training and expertise, ESNs are able to dedicate more focused and higher-quality time to families, delivering targeted interventions that address the multiple aspects of living with epilepsy. CONCLUSIONS: In healthcare settings where the Epilepsy Specialist Nurse (ESN) role is established, families report improved well-being, greater access to viii information, and enhanced emotional support. Introducing this role within the Italian healthcare system could prove beneficial and may be facilitated through the development of a dedicated training pathway to promote specialised nursing practice. KEYWORDS: Epilepsy, Epilepsy Nurse, Children, Family, Nursing Role, Intervention, Education, ESN.
BACKGROUND: L’epilessia è una delle malattie neurologiche più comuni in età pediatrica la quale comporta impatti notevoli sulla vita delle persone. Nei paesi più sviluppati colpisce circa 1 persona su 100, al mondo quindi vivono oltre 50 milioni di persone con epilessia e può sorgere a qualsiasi età della vita. I genitori dei pazienti pediatrici sono in grande difficoltà per la gestione della vita quotidiana, della scuola, delle emozioni che ne consegue dopo la diagnosi. In questo contesto l’infermiere ha un ruolo fondamentale per migliorare la qualità di vita del paziente e della famiglia fornendo maggiore educazione terapeutica ma anche sostegno emotivo e psicologico. OBBIETTIVO: Esplorare il contributo che l’infermiere può offrire nel processo di educazione e supporto rivolto alle famiglie di bambini affetti da epilessia, ponendo in particolare attenzione alla figura dell’infermiere specialista in epilessia, ESN (Epilepsy Specialist Nurse). MATERIALI E METODI: Revisione della letteratura consultando le seguenti banche dati: PubMed, Google Schoolar, Scopus. Sono state usate stringhe di ricerca a termini Mesh con operatori booleani AND e OR. Sono state anche usate altre fonti come LICE e ILAE, mantenendo come criteri di inclusione: lingua inglese e italiana, full text, età 0-18 anni e articoli scritti dopo il 2000. RISULTATI: Consultando la letteratura scientifica sono emerse le aree in cui i genitori dei bambini affetti da epilessia non si sentono preparati, degli esempi sono: conoscenza della patologia, terapie farmacologiche e non farmacologiche, primo soccorso e limitazioni sociali e scolastiche. L’Epilepsy Specialist Nurse (ESN) sembrerebbe, in alcuni contesti internazionali, la risposta a questi bisogni. Con le sue competenze e la sua formazione riesce a dedicare una maggior e miglior qualità di tempo per le esigenze delle famiglie che affrontano questa malattia, promuovendo interventi mirati su tutti gli aspetti della vita del paziente. CONCLUSIONI: Dove si trovi la figura dell’Epilepsy Specialist Nurse (ESN) si riscontra un maggior benessere, informazione e sostegno da parte delle famiglie che hanno potuto interagirci. Si potrebbe pensare di introdurre questa posizione anche in Italia, tramite un percorso formativo che valorizzi l’infermieristica specializzata. vi PAROLE CHIAVE: Epilepsy, Epilepsy Nurse, Children, Family, Nursing Role, Intervention, Education, ESN.
Crescere con l'epilessia: il ruolo dell' Epilepsy Specialist nurse (ESN) come guida e sostegno familiare
COSENTINO, VIRGINIA
2024/2025
Abstract
BACKGROUND: Epilepsy is one of the most common neurological conditions in paediatric populations and has a significant impact on the lives of those affected. In developed countries, it affects approximately 1 in 100 individuals. Globally, over 50 million people are living with epilepsy, and the condition can develop at any stage of life. Parents of children diagnosed with epilepsy often face considerable challenges in managing daily routines, schooling, and the emotional consequences that follow a diagnosis. In this context, the role of the nurse is essential in improving the quality of life for both the patient and their family by providing enhanced therapeutic education as well as emotional and psychological support. AIM: To explore the contribution that nurses can make in the educational and supportive processes aimed at families of children with epilepsy, with particular focus on the role of the Epilepsy Specialist Nurse (ESN). MATERIALS AND METHODS: A literature review was conducted using the following databases: PubMed, Google Scholar, and Scopus. Search strategies included the use of MeSH terms combined with Boolean operators (AND, OR). Additional sources such as LICE (Lega Italiana Contro l'Epilessia) and ILAE (International League Against Epilepsy) were also consulted. Inclusion criteria were: articles in English or Italian, full-text availability, population aged 0-18 years, and publications from the year 2000 onwards. RESULTS: The review of the scientific literature revealed several areas in which parents of children with epilepsy feel underprepared. These include understanding the condition itself, pharmacological and non-pharmacological treatments, first aid measures, and managing social and educational limitations. In various international contexts, the Epilepsy Specialist Nurse (ESN) appears to represent a valuable response to these needs. Thanks to their specialist training and expertise, ESNs are able to dedicate more focused and higher-quality time to families, delivering targeted interventions that address the multiple aspects of living with epilepsy. CONCLUSIONS: In healthcare settings where the Epilepsy Specialist Nurse (ESN) role is established, families report improved well-being, greater access to viii information, and enhanced emotional support. Introducing this role within the Italian healthcare system could prove beneficial and may be facilitated through the development of a dedicated training pathway to promote specialised nursing practice. KEYWORDS: Epilepsy, Epilepsy Nurse, Children, Family, Nursing Role, Intervention, Education, ESN.| File | Dimensione | Formato | |
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https://hdl.handle.net/20.500.12608/98220