Home > Research > Publications & Outputs > Carer evaluations of paediatric epilepsy servic...

Electronic data

  • Beesley2021

    Rights statement: 12m

    Accepted author manuscript, 421 KB, PDF document

    Available under license: CC BY: Creative Commons Attribution 4.0 International License

Links

Text available via DOI:

View graph of relations

Carer evaluations of paediatric epilepsy services with and without Epilepsy Specialist Nurse provision

Research output: Contribution to Journal/MagazineJournal articlepeer-review

Published
Close
<mark>Journal publication date</mark>31/10/2021
<mark>Journal</mark>Seizure - European Journal of Epilepsy
Volume91
Number of pages7
Pages (from-to)174-180
Publication StatusPublished
Early online date18/06/21
<mark>Original language</mark>English

Abstract

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

Methods
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.

Results
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.

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