Abstract
Objectives
To build on the limited evidence available about the current role and impact of the Australian Epilepsy Nurse (EN) in supporting continuity of care for people living with epilepsy (PLWE) including refractory epilepsy, and provide information to support future developments of the EN role to advance integration of care from primary, community and tertiary settings. To focus research on specific objectives related to EN information provision, clinical care support, education enhancement, service improvement and public health crisis management (COVID-19).
Methods:
This three-staged, mixed-methods study will commence in August 2020. Stage one will involve 20 confidential, semi-structured interviews with EN participants across Australia to generate rich information related to EN community-based roles and responsibilities, particularly in relation to refractory epilepsy. Researcher field notes will be taken at all interviews, contributing to the clarification of data. Demographic data will be collected for each participant. A thematic analysis of the data will be conducted iteratively, to help inform the next stage.
Stage two will build on our knowledge and understanding of the characteristics of the EN helpline in supporting PLWE, families and others, through a retrospective descriptive statistical analysis of de-identified phone call data through calls made to the Epilepsy Action Australia (EAA), Epilepsy Nurse Line (ENL). This analysis will examine the characteristics of callers, the reason for calls, the actions taken by ENs and changes to use of the ENL during and beyond COVID-19.
Stage three will follow on from stage one with an additional ten semi structured interviews with ENs and/ or 2 focus groups. Stage three will confirm and embellish upon the data collected, and themes generated, during stages one and two.
Conclusion:
Preliminary findings will provide an evidence-base clarifying EN roles and responsibilities and services delivered, including helpline, through EN activity in community care settings across Australia.
To build on the limited evidence available about the current role and impact of the Australian Epilepsy Nurse (EN) in supporting continuity of care for people living with epilepsy (PLWE) including refractory epilepsy, and provide information to support future developments of the EN role to advance integration of care from primary, community and tertiary settings. To focus research on specific objectives related to EN information provision, clinical care support, education enhancement, service improvement and public health crisis management (COVID-19).
Methods:
This three-staged, mixed-methods study will commence in August 2020. Stage one will involve 20 confidential, semi-structured interviews with EN participants across Australia to generate rich information related to EN community-based roles and responsibilities, particularly in relation to refractory epilepsy. Researcher field notes will be taken at all interviews, contributing to the clarification of data. Demographic data will be collected for each participant. A thematic analysis of the data will be conducted iteratively, to help inform the next stage.
Stage two will build on our knowledge and understanding of the characteristics of the EN helpline in supporting PLWE, families and others, through a retrospective descriptive statistical analysis of de-identified phone call data through calls made to the Epilepsy Action Australia (EAA), Epilepsy Nurse Line (ENL). This analysis will examine the characteristics of callers, the reason for calls, the actions taken by ENs and changes to use of the ENL during and beyond COVID-19.
Stage three will follow on from stage one with an additional ten semi structured interviews with ENs and/ or 2 focus groups. Stage three will confirm and embellish upon the data collected, and themes generated, during stages one and two.
Conclusion:
Preliminary findings will provide an evidence-base clarifying EN roles and responsibilities and services delivered, including helpline, through EN activity in community care settings across Australia.
| Original language | English |
|---|---|
| Pages | 67 |
| Number of pages | 1 |
| Publication status | Published - 2020 |
| Event | Epilepsy Society of Australia Virtual Annual Scientific Meeting - Online Duration: 5 Nov 2020 → 6 Nov 2020 |
Conference
| Conference | Epilepsy Society of Australia Virtual Annual Scientific Meeting |
|---|---|
| Period | 5/11/20 → 6/11/20 |