Examining the contribution of Epilepsy Specialist Nurses (ESNs)
Research type
Research Study
Full title
Examining the contribution of Epilepsy Specialist Nurses (ESNs) to paediatric epilepsy services from the carer perspective.
IRAS ID
154632
Contact name
Rebekah E. Beesley
Contact email
Sponsor organisation
Lancaster University
Research summary
A diagnosis of epilepsy in a child can bring multiple challenges. There is evidence that the condition can signal an underlying problem that causes some impairments in thinking and attention, as well as an increase in behaviour and mood problems. The seizures can have psychological effects before and after, as well as during the seizure, and anti-epileptic medications can effect mood and thinking also. In addition to these potential problems, children, carers and the wider community have to negotiate the potential dangers, restrictions and precautions that a diagnosis of epilepsy can bring. In order to address these complex needs, the role of the Epilepsy Specialist Nurse (ESN) was developed in the early 1990s in the UK, and evidence from adult services suggest that patient satisfaction was greatly enhanced by these service developments, in those areas with an ESN. Current NICE guidelines state that every child with epilepsy should have access to an ESN, with the ESN performing key roles both in supporting clinicians and families, and liaising with relevant wider agencies such as those providing educational and welfare services. A recent audit of paediatric services in the UK found that only 46% of children had access to an ESN within the first 12 months after diagnosis. The present study seeks to examine the contribution of ESNs to paediatric epilepsy services from the carer's perspective, by comparing areas with and without an ESN service. There would be 3 components of the study and carers would have the opportunity to opt in/out of these. The components include the recording of a paediatric consultation, a questionnaire assessing psychosocial needs of carers and an in-depth interview. The results of the research should help identify carer needs and whether the provision of an ESN helps to address those needs.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
14/SC/1189
Date of REC Opinion
8 Aug 2014
REC opinion
Favourable Opinion