Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision

To compare paediatric epilepsy services with and without Epilepsy Specialist Nurse (ESN) provision on measures of carer satisfaction and accessibility of service.

In Study 1, 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. In Study 2, in depth semi-structured interviews with 58 carers (51 of whom had also participated in Study 1) were examined for talk related to accessibility of service.

In Study 1, 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 study 2 a majority of all carers reported having made at least one attempt to contact services between appointments, for a wide range of reasons, with timely resolution reported in ESN areas, but more variable resolution occurring in non-ESN areas.

Paediatric ESNs provide a critical and timely service to children with epilepsy and their carers.