Examining the contribution of Epilepsy Specialist Nurses (ESNs) to paediatric epilepsy services from the carer perspective.

Beesley, Rebekah and Lew, Adina and Walton, Chris (2025) Examining the contribution of Epilepsy Specialist Nurses (ESNs) to paediatric epilepsy services from the carer perspective. PhD thesis, Lancaster University.

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Abstract

The purpose of this research was to compare paediatric epilepsy services with and without Epilepsy Specialist Nurse (ESN) provision from the carer perspective. Two studies were conducted as part of a mixed-methods design; a questionnaire study in which measures of carers satisfaction, need and accessibility were investigated and an interview study where perspectives from carers concerning their relationships with paediatric epilepsy services were analysed. In the questionnaire study, carers in Northern England (n = 69 with an ESN, n = 27 without an ESN), completed the Parent Report of Psychosocial Care Scale to measure satisfaction with service provision. A measure of accessibility of service was also included. Satisfaction with service levels were high across all areas, (ESN areas Mdn = 9.04, IQR = 1.48, non-ESN areas Mdn = 8.29, IQR = 2.41; maximum score = 10), but with carers from ESN areas over 3 times more likely to endorse scores at the median or above relative to non-ESN areas (OR = 3.28). For accessibility, carers in ESN areas were over 5 times more likely to have a median score or higher (ESN areas Mdn = 10, IQR = 0.45, non- ESN areas Mdn = 8.4, IQR = 5, OR = 5.43). In the interview study, semi-structured interviews with 58 carers (51 had completed the questionnaire), 37 from service areas with an ESN, and 21 from areas without an ESN in the North-West of England, were conducted and analysed using Thematic Analysis adopting a realist epistemological position. Four themes relating to different aspects of carers’ needs were identified. These were needs for understanding the condition, condition management support, educational liaison support, and emotional support. The ESNs were able to meet these diverse support needs of families proactively and sensitively, whereas in services without ESNs, carers were left to attempt to fulfil needs across different contexts in an ad hoc manner. In conclusion, paediatric ESNs provide a critical and timely service to children with epilepsy and their carers. ESNs are an essential resource for all involved in the care of CWE and they help to mitigate carer burden. Further, the findings highlight the need for improved outcome measures that assess timeliness and optimal carer solutions in communications with services between regular appointments in order to adequately and effectively capture outcomes of ESN provision and the variety of problems they solve.