Beesley, Rebekah and Lew, Adina and Hindley, Daniel and Jameson, Helen and Panwar, Nitin and Walton, Chris (2022) Carer's perceptions of paediatric epilepsy services with and without epilepsy specialist nurses:A thematic analysis. Seizure - European Journal of Epilepsy, 103. pp. 26-31. ISSN 1059-1311
Full text not available from this repository.Abstract
Purpose To obtain in-depth perspectives from carers concerning their relationships with paediatric epilepsy services with and without an Epilepsy Specialist Nurse (ESN). Methods Semi-structured interviews with 58 carers, 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. Results Four themes relating to different aspects of carers’ needs were identified. These were needs for understanding the condition, ongoing 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. Conclusion Paediatric ESNs provide an essential resource for both CWE, carers and other professionals involved in the care of CWE that helps to mitigate carer burden.