The role of Epilepsy Specialist Nurses in supporting and empowering people with epilepsy: new findings from the SENsE study.

New findings from the SENsE study on the role and impact of Epilepsy Specialist Nurses (ESNs) in Ireland have been published in the latest edition of the leading epilepsy journal Seizure.

The SENsE study was funded by Epilepsy Ireland and the Health Research Board and conducted by Prof Agnes Higgins at Trinity College Dublin. A number of other papers have already been published on the valuable role played by ESNs in delivering epilepsy care in Ireland.

The latest study explored how ESNs enacted their clinical role using individual and focus group interviews, observation and documentary analysis. Data was collected from 12 ESNs in five hospital-based epilepsy services in Ireland, 24 multidisciplinary team members, and 35 people with epilepsy (PWE) and their family members.

Findings from the study highlight the key role ESNs play as members of the multi-disciplinary team in building and supporting PWE’s capacity to self-manage their illness. The authors found that ESNs work out of a value base that gives primacy to collaboration, active participation, relationship-based care, and respect for the voices of PWE and family members. They are key players in empowering people to self-manage their illness.

Core aspects of their role includes:

  • performing a comprehensive assessment to inform care and treatment;
  • providing person-centred education;
  • monitoring the impact of care and treatment;
  • providing education to family members and significant others;
  • providing psychosocial care to optimise psychological wellness;
  • co-ordinating care to enhance patients’ journey;
  • quality assuring patient information.

However, the study also highlights deficits in the provision of information on sudden unexpected death in epilepsy (SUDEP) to patients and how to disclose a diagnosis of epilepsy to others. The authors state that “these are significant omissions in light of the guidelines and other literature that stresses their importance.

The paper also highlights deficits in ESNs knowledge and confidence in supporting people experiencing significant mental health morbidities. The authors recommend that ESNs require support to increase their competence around mental health morbidities and they highlight the need to develop specialist mental health services to ensure timely access for patients.

More findings from the SENSE study can be downloaded here. Epilepsy Ireland, along with organisations like the Neurological Alliance of Ireland is advocating for the appointment of additional ESNs to address the regional imbalance that exists in accessing services and to focus on groups with specific needs such as women with epilepsy, adolescents, and people with an intellectual disability.