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.
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| http://dx.doi.org/10.1016/j.seizure.2022.10.010 | DOI Listing |
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