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Beesley RE, Walton C, Hindley D, et al. Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision. Seizure. 2021;91:174-180doi: 10.1016/j.seizure.2021.06.012.
Beesley, R. E., Walton, C., Hindley, D., Jameson, H., Panwar, N., & Lew, A. R. (2021). Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision. Seizure, 91174-180. https://doi.org/10.1016/j.seizure.2021.06.012
Beesley, Rebekah E, et al. "Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision." Seizure vol. 91 (2021): 174-180. doi: https://doi.org/10.1016/j.seizure.2021.06.012
Beesley RE, Walton C, Hindley D, Jameson H, Panwar N, Lew AR. Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision. Seizure. 2021 Oct;91:174-180. doi: 10.1016/j.seizure.2021.06.012. Epub 2021 Jun 18. PMID: 34174691.
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Seizure. 2021 Oct;91:174-180. doi: 10.1016/j.seizure.2021.06.012. Epub 2021 Jun 18.

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

Seizure

Rebekah E Beesley, Chris Walton, Daniel Hindley, Helen Jameson, Nitin Panwar, Adina R Lew

Affiliations

  1. Psychology Department, Fylde College, Lancaster University, Lancaster LA1 4YF, United Kingdom. Electronic address: [email protected].
  2. Psychology Department, Fylde College, Lancaster University, Lancaster LA1 4YF, United Kingdom. Electronic address: [email protected].
  3. Bolton NHS Foundation Trust, Breightmet Health Centre, Breightmet Fold Lane, Bolton BL2 6NT, United Kingdom. Electronic address: [email protected].
  4. Bolton NHS Foundation Trust, Breightmet Health Centre, Breightmet Fold Lane, Bolton BL2 6NT, United Kingdom. Electronic address: [email protected].
  5. Manchester University Foundation Trust, 1st Floor, Universal Sq., Devonshire St. North, Manchester, M12 6JH, United Kingdom. Electronic address: [email protected].
  6. Psychology Department, Fylde College, Lancaster University, Lancaster LA1 4YF, United Kingdom. Electronic address: [email protected].

PMID: 34174691 DOI: 10.1016/j.seizure.2021.06.012

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.

Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.

Keywords: Children with epilepsy; Epilepsy specialist nurse; Paediatric epilepsy services

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