Paediatric epilepsy services from the carer perspective- the contribution of Epilepsy Specialist Nurses (ESNs)

Abstract

Background: Epilepsy Specialist Nurses (ESNs) perform a range of duties including drug reviews, telephone advice, arranging school support and respite liaison. Although every child with epilepsy should have access to an ESN, almost a third of paediatric patients do not (Epilpesy12 Round 2 National Report, November 2014). There is a lack of published literature that evaluates ESN provision within paediatric services. This study aims to address this gap and evaluate the contribution of ESN support by comparing carer experiences of services with and without an ESN. Methods: Carers of children with Epilepsy (N=58) took part in semi-structured interviews. Data will be analysed according to the method known as ‘Grounded Theory’. This allows for development of a grounded understanding of how carers adapt to having a child with epilepsy and how this is shaped by a wide range of factors, such as interactions with services (ESN or non-ESN), issues of medication, social support and understanding of epilepsy. Expected results: Based on the experiences of carers we hope to identify key features of services that are perceived as most effective and/or valuable, be it the provision of information, emotional support or responsiveness and how this relates to ESN provision. Current stage of work: Data collection is complete and the current focus is data analysis. Discussion: We aim to develop a theory of the informational, affective and social needs of carers of children with Epilepsy and how these are effectively met through particular services and where there may be scope for development.