Supporting and empowering people with epilepsy: Contribution of the Epilepsy Specialist Nurses (SENsE study).

PURPOSE: To explore how Epilepsy Specialist Nurses in the Republic of Ireland enacted their clinical role. METHODS: Qualitative descriptive design that involved individual and focus group interviews, observation and documentary analysis. Data were collected from 12 Epilepsy Specialist Nurses working in five hospital-based epilepsy services in Ireland, 24 multidisciplinary team members, and 35 people with epilepsy and their family members were involved. Data were analysed in NVivo using an inductive and deductive approach. RESULTS: Epilepsy Specialist Nurses 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 dimensions of their clinical 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; and quality assuring patient information. CONCLUSION: Findings from this study highlight the key role ESNs played as members of the MDT in building and supporting PWE's capacity to self-manage their illness. However, they also indicate deficits in the provision of information on sudden unexpected death in epilepsy and how to disclose a diagnosis of epilepsy by the ESN, as well deficits in their knowledge and confidence in supporting people experiencing significant mental health morbidities.

Evidence-based practice among epilepsy specialist nurses in the Republic of Ireland: Findings from the SENsE study.

AIM: To describe how epilepsy specialist nurses in Ireland enact the evidence-based practice dimension of their role. BACKGROUND: The importance of epilepsy specialist nurses (ESNs) delivering evidence-based care to people experiencing epilepsy is unquestionable, yet research into this aspect of the role is relatively sparse. METHODS: A qualitative design was used, involving 12 epilepsy specialist nurses working in five units in Ireland, 24 multidisciplinary team members working with them and 35 people with epilepsy and their family members. Data were collected using individual and focus group interviews, observation and documentary analysis. RESULTS: These ESNs were active in accumulating, translating, applying, generating and disseminating evidence. All were actively involved in, or leading audit and service evaluations, and used findings to improve practice. Their research activity mainly consisted of small-scale unfunded research projects. CONCLUSIONS: These ESNs acted as opinion leaders and role models in relation to evidence-based practice, including the generation of new knowledge through audit and research. IMPLICATIONS FOR NURSING MANAGEMENT: Organisations and managers need to support ESNs by ensuring that they have the necessary resources and competencies to accumulate, translate, apply, generate and disseminate relevant evidence. Future research should explore the impact of ESNs' evidence-based practice on patient outcomes.

Rising to the challenge: Epilepsy specialist nurses as leaders of service improvements and change (SENsE study).

PURPOSE: To report the leadership role and change activities of epilepsy specialist nurses (ESNs) in Ireland; findings from the SENsE study. METHOD: A mixed methods study design was used, involving 12 epilepsy specialist nurses working in five units in Ireland, 24multidisciplinary team members working with them, and 35 people with epilepsy and their family members. Data were collected using individual and focus group interviews, observation and documentary analysis. RESULTS: Five key areas in which ESNs demonstrated leading on the change agenda were identified. These included: Initiating new clinical practice developments; Building capability within the multidisciplinary team; Developing education programmes and resources for people with epilepsy, family and the public; Exerting influence through membership of committees and lobbying; and Advancing the ESN role. CONCLUSION: Though the epilepsy specialist nurse role was first established in the UK in 1988, much of the literature that discusses or describes the ESN role is founded on anecdotal evidence, or focusses on their clinical expertise. Findings from this study provide empirical evidence that the ESNs were involved as key players in leading changes within the services, in the education of others, and the continuous advancement of epilepsy care.

Patients with epilepsy care experiences: Comparison between services with and without an epilepsy specialist nurse.

The aim of this study was to determine whether there were differences in experiences of care, satisfaction with care and quality of life between those who were in receipt of care from a service with an epilepsy specialist nurse (ESN) and those who were receiving care from a service that did not include an ESN. A comparative design was used, which involved the completion of a confidential, self-completed survey. The survey was administered to a nonprobability convenience sample of patients with epilepsy who were attending services with an ESN (n = 244) and services where the treatment team did not include an ESN (n = 261) from each of the four health areas in Ireland. This study found that, in comparison to people with epilepsy (PWE) who attended a service without an ESN, PWE who attended a service with an ESN reported receiving greater amount of information, were more involved in their care, perceived care to be better coordinated, and had greater confidence in the information provided and greater comfort in discussing issues with an ESN. They also reported higher rates of satisfaction with the emotional and practical support offered. Thus, it may be concluded that models of care involving the input of ESNs enhance the quality of epilepsy care and care processes. The findings also emphasize the need to have an ESN as part of the multidisciplinary team.