An evaluation of the role of the Epilepsy Specialist Nurse and the impact on patient quality of life.

Principal Investigator:

Prof. Agnes Higgins,
Head of the School of Nursing and Midwifery at Trinity College, Dublin. 

Investment:

€149,996 over three years. 50% of the funding for this project has been made available by the Health Research Board (HRB) through the Joint Funding Scheme operated by the HRB and the Medical Research Charities Group, of which Epilepsy Ireland is a member. Epilepsy Ireland will fund the other 50% through fundraising.

About the Project:

An epilepsy specialist nurse (ESN) is a clinical nurse who works in the specialist area of epilepsy care. It has been suggested that ESNs can affect a range of patient experiences, including knowledge about epilepsy, drug management and overall satisfaction. However, few studies have ever formally evaluated this role.

The aim of the research is to assess the position of ESNs in Ireland and their impact on the patients' quality of life. The study will establish if there are differences between patients who have access to an ESN and those who don't, and whether or not the ESN is cost-effective to the public. The study coincides with the creation of new nursing positions as part of the new National Epilepsy Care Programme.

There will be a case study of 10 ESNs from five hospitals, who will be interviewed and asked to keep diaries of their actions. 10 members of a clinical team who work with the ESNs will also be interviewed and costs of ESN care will be examined.

Patients will be split into groups according to factors such as the hospital they attend and whether or not they are cared for by an ESN. Over the course of the study they will be asked to complete interviews and questionnaires. Information from the interviews, observations and diaries will be examined and the data will be analysed to see if there are any differences between the groups that do have an ESN and those that do not.

Results:

Patients with epilepsy care experiences: Comparison between services with and without an epilepsy specialist nurse
Epilepsy & Behavior , Volume 85 , 85 - 94 (August 2018)

Rising to the challenge: Epilepsy specialist nurses as leaders of service improvements and change (SENsE study)
Seizure: European Journal of Epilepsy 63 (2018) 40–47 (November 2018)

Evidence-based practice among epilepsy specialist nurses in the Republic of Ireland: Findings from the SENsE study.
J Nurs Manag. 2019;00:1–8.

Supporting and empowering people with epilepsy: Contribution of the Epilepsy Specialist Nurses (SENsE study)
Seizure, Volume 71, 2019, Pages 42-49,

Factors influencing the implementation of Epilepsy Specialist Nurse role: Using the Consolidation Framework for Implementation Research
J Clin Nurs. 2020;00:1–13.

Full Study Report (below)

Summary Report of findings (below)