Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy

Aims and Objectives: The aim of this study is to enhance the understanding of the core elements and influencing factors on the community‐based epilepsy nurse's role and responsibilities. Background: Internationally, epilepsy nurse specialists play a key role in providing person‐centred care and management of epilepsy but there is a gap in understanding of their role in the community. Design: A national three‐stage, mixed‐method study was conducted. Methods: One‐on‐one, in‐depth semi‐structured qualitative interviews were conducted online with 12 community‐based epilepsy nurses (Stage 1); retrospective analysis of data collected from the National Epilepsy Line, a nurse‐led community helpline (Stage 2); and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. Results: Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. (2) The key components of the epilepsy nurse role explored role diversity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. (3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID‐19 pandemic experiences, role boundaries, funding, and resource availability. Conclusion: Community epilepsy nurses play a pivotal role in providing holistic, person‐centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. Relevance to Clinical Practice: Epilepsy nurses' person‐centred approach to epilepsy management is influenced by the limited investment in epilepsy‐specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. No Patient or Public Contribution: Only epilepsy nurses' perspectives were sought

Determining the role and responsibilities of the Australian epilepsy nurse in the management of epilepsy: a study protocol

Introduction Epilepsy is a common neurological condition affecting between 3% and 3.5% of the Australian population at some point in their lifetime. The effective management of chronic and complex conditions such as epilepsy requires person-centred and coordinated care across sectors, from primary to tertiary healthcare. Internationally, epilepsy nurse specialists are frequently identified as playing a vital role in improving the integration of epilepsy care and enhancing patient self-management. This workforce has not been the focus of research in Australia to date. Methods and analysis This multistage mixed-method study examines the role and responsibilities of epilepsy nurses, particularly in primary and community care settings, across Australia, including through the provision of a nurse helpline service. A nationwide sample of 30 epilepsy nurses will be purposively recruited via advertisements distributed by epilepsy organisations and through word-of-mouth snowball sampling. Two stages (1 and 3) consist of a demographic questionnaire and semistructured interviews (individual or group) with epilepsy nurse participants, with the thematic data analysis from this work informing the areas for focus in stage 3. Stage 2 comprises of a retrospective descriptive analysis of phone call data from Epilepsy Action Australia’s National Epilepsy Line service to identify types of users, their needs and reasons for using the service, and to characterise the range of activities undertaken by the nurse call takers. Ethics and dissemination Ethics approval for this study was granted by Macquarie University (HREC: 52020668117612). Findings of the study will be published through peer-reviewed journal articles and summary reports to key stakeholders, and disseminated through public forums and academic conference presentations. Study findings will also be communicated to people living with epilepsy and families

Coping with chronicity: exploring women's experiences living with autoimmune diseases that fluctuate and flare

Theoretical thesis.Bibliography: pages 49-54.Introduction -- 1. Through sickness and wellness -- 2. Loss and learning -- 3. Control and hope -- 4. Silences and stigma -- 5. Conclusion -- References -- Appendix.This thesis examines the illness experience for Australian women with autoimmune diseases with a relapse / remitting or fluctuating disease course. Drawing on ethnographic interviews, I explore the impact of chronicity and the shifting between sickness and wellness on their lives. I address how participants responded to the disruptive force of disease onset and diagnosis, and their tactics to manage and seek control of their illness. In sum, I seek to demonstrate that the women's approaches to living with chronic illness are not static, but reflect the shifting grounds of their disease experience, changing sense of self, and support received from others.1 online resource (56 pages) illustration

Committed, ambivalent, concealed, or distanced: community organisations’ perceptions of their role in local prevention systems

Prevention of chronic diseases happens within systems of action across whole communities. In local communities, organisations play important roles that influence health, but many are in non-health sectors where health or ‘prevention’ is not their main remit. In this paper, we explore how organisations in communities perceive their role as part of a local system of chronic disease prevention. We use interview data from ‘Prevention Tracker’, an investigation undertaken with Australian communities that aimed to describe how local prevention systems are organised. Four communities participated – one regional, one remote, and two urban. In each, local advisory groups identified key informants for semi-structured interviews (n = 80). We applied the Ottawa Charter for Health Promotion as a sensitising framework to categorise responses; and undertook inductive thematic analysis to generate deeper insights into organisations’ orientation to prevention. While some respondents clearly recognised and articulated linkages between their organisation’s activities and prevention, sometimes drawing from health promotion principles to do so, many did not and were prompted by the interview to consider their contributions. A proportion explicitly distanced themselves from prevention despite their work directly addressing the social determinants that underscore health. For some, this distancing reflects a tactical decision to reduce competition and promote partnership between organisations, and to engage clients. This study demonstrates that diverse organisations make contributions to prevention – often outside of ‘core business’ – whether or not the organisations themselves realise, relate to and/or self-identify as playing this role

The impact of childhood injury and injury severity on school performance and high school completion in Australia: a matched population-based retrospective cohort study

Background: Exploring the impact of injury and injury severity on academic outcomes could assist to identify characteristics of young people likely to require learning support services. This study aims to compare scholastic performance and high school completion of young people hospitalised for an injury compared to young people not hospitalised for an injury by injury severity; and to examine factors influencing scholastic performance and school completion. Method: A population-based matched case-comparison cohort study of young people aged ≤18 years hospitalised for an injury during 2005–2018 in New South Wales, Australia using linked birth, health, education and mortality records. The comparison cohort was matched on age, gender and residential postcode. Generalised linear mixed modelling examined risk of performance below the national minimum standard (NMS) on the National Assessment Plan for Literacy and Numeracy (NAPLAN) and generalised linear regression examined risk of not completing high school for injured young people compared to matched peers. Results: Injured young people had a higher risk of not achieving the NMS compared to their matched peers for numeracy (ARR: 1.12; 95%CI 1.06–1.17), reading (ARR: 1.09; 95%CI 1.04–1.13), spelling (ARR: 1.13; 95%CI 1.09–1.18), grammar (ARR: 1.11; 95%CI 1.06–1.15), and writing (ARR: 1.07; 95%CI 1.04–1.11). As injury severity increased from minor to serious, the risk of not achieving the NMS generally increased for injured young people compared to matched peers. Injured young people had almost twice the risk of not completing high school at year 10 (ARR: 2.17; 95%CI 1.73–2.72), year 11 (ARR: 1.95; 95%CI 1.78–2.14) or year 12 (ARR: 1.93; 95%CI 1.78–2.08) compared to matched peers. Conclusions: The identification of characteristics of young people most likely to encounter problems in the academic environment after sustaining an injury is important to facilitate the potential need for learning support. Assessing learning needs and monitoring return-to-school progress post-injury may aid identification of any ongoing learning support requirements.</p