The epilepsy specialist nurse: A mixed-methods case study on the role and activities

Locatelli, Giulia; Ausili, Davide; Stubbings, V.; Mauro, Stefania Di; Luciani, Michela

doi:10.1016/j.seizure.2020.12.013

Cited by 6 publications

(11 citation statements)

References 18 publications

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“…In the UK and elsewhere some, but not all children and parents/caregivers, will have access to an Epilepsy Specialist Nurse (ESN) whose remit is to provide parents with information, advice and support about their child’s medical condition but also on coping with the wider challenges [ 80 ]. Consistent support for all parents of children with epilepsy from an ESN and acknowledgments of their fears and concerns could be an important way of validating and mitigating the threat reported by parents/caregivers in the review.…”

Section: Discussionmentioning

confidence: 99%

Parents’/caregivers’ fears and concerns about their child’s epilepsy: A scoping review

et al. 2022

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Background Childhood epilepsy is a serious and common neurological condition and can have life-long consequences and its impact can pervade all aspects of family life. Whilst the medical management of seizures is important, much of the day-to-day home management of epilepsy is invisible to people external to the family, including health care professionals, and parents’/caregivers’ fears and concerns can go unacknowledged and unaddressed by health care professionals. Objective This objective of this review was to examine parents’/caregivers’ fears and concerns regarding their child’s epilepsy, the impact of these fears and concerns on family life, the social and emotional well-being of parents/caregivers and any factors which mitigate these fears and concerns. Design Scoping review using a modified version of Arksey and O’Malley’s framework. Data sources Relevant studies were identified using key search terms in Scopus, Medline, CINAHL and PsychInfo databases in March 2021 with hand checking of reference lists. Search terms were developed using population (parents/caregivers of children aged ≤ 18 years with epilepsy, families); concept (parents’/caregivers’ fears, concerns, anxiety about their child’s epilepsy); and context (any setting). A further search was run in April 2022. Other inclusion criteria: English language empirical studies, 2010–2021. Study appraisal methods A minimum of two reviewers independently screened articles and undertook data extraction and decisions were consensually made. Methodological quality appraisal was undertaken using the Mixed Methods Appraisal Tool v2018. A data extraction table was created to chart all studies. The conduct and reporting of this study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (S1 Table). There is no published copy of the review protocol. Main findings The search identified a total of 4077 papers (after duplicates were removed) of which 110 were assessed for eligibility. Twenty-four papers published between 2010–2021 were included in the review and each paper was treated as a separate study. The review findings indicate that parents’/caregivers’ fears and concerns stem from more than their child’s seizures and relate to many wider aspects of family life. These fears and concerns had far-reaching influences on their parenting/caregiving, and on the lifestyle and activities of their child and their family. What was less evident was what parents/caregivers wanted in terms of support or how they thought health professionals could acknowledge and/or allay their fears and concerns. The discussion is framed within the compassion-focused therapy model as a basis for generating new thinking about the impact of these fears and concerns and the need for a new agenda for clinical consultations in childhood epilepsy. Conclusions The review concludes with a proposal that a more compassionate agenda underpins the dialogue between parents/caregivers and clinicians to encompass and mitigate the wider emotional, psychosocial, and societal threats that impact on the parent/caregivers of children with epilepsy.

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Section: Discussionmentioning

confidence: 99%

Parents’/caregivers’ fears and concerns about their child’s epilepsy: A scoping review

et al. 2022

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“…This is particularly in relation to working practices, with the absence of national competency frameworks in epilepsy care, standardised speciality practice and job titles, and limited understanding of the EN scope of practice. Ultimately, this can impact skill development, career progression, and workforce planning (Epilepsy Nurse Specialist Association, 2012; Gardner et al, 2016;Higgins et al, 2019aHiggins et al, , 2019bLocatelli et al, 2021;Manzanares et al, 2021). ENs who predominantly work in the NFP sector faced additional challenges in their role working with a disconnected network of care and siloed governance structures across Australia related to the fragmented health and social care systems (Higgins et al, 2020;Schroeder & Cutler, 2021).…”

Section: Nurse-led Helplinementioning

confidence: 99%

“…Despite significant hurdles to overcome, community ENs demonstrated their expertise and role value by taking a holistic and comprehensive view of the social, emotional, and clinical factors that impact PLWE and their families (Higgins et al, 2019a(Higgins et al, , 2019bHiggins, Downes, Varley, Tyrell, et al, 2018;Locatelli et al, 2021;Pfäfflin et al, 2016).…”

Section: Nurse-led Helplinementioning

confidence: 99%

“…A recent review by Hutchinson, Herkes, et al (2020) noted integrated models of care in epilepsy are slowly developing, but research in the UK and Ireland has highlighted the vital role that ENs play in supporting 'the best value care for all people living with epilepsy, in the right place, at the right time, sharing the best available information' (Health Services Executive, 2016, p. 9; Hutchinson, Ryder, et al, 2020;Varley et al, 2020). At the same time, the ENs from those research studies identified poor coherence impacts the sharing of timely clinical information and the ability to respond to the complex demands and needs of PLWE and their families (Campbell et al, 2019;Locatelli et al, 2021).…”

Section: Factorsimpactingepilepsynursepracticementioning

confidence: 99%

“…The United Kingdom (UK) and Republic of Ireland drive the development of the EN role, promoting the inclusion of ENs in all epilepsy specialist teams through the National Institute of Clinical Excellence, the Scottish Intercollegiate Guidelines Network, and the Irish National Epilepsy Care Programme, although not yet fully achieved (Higgins, Downes, Varley, Doherty, et al, 2018; Higgins, Downes, Varley, Tyrell, et al, 2018; Sauro et al, 2015). However, the EN role is not standardised globally and is frequently developed in an ad hoc manner according to specific local requirements and the nurses' level of expertise (Campbell et al, 2019; Locatelli et al, 2021, p. 61). It could be argued that this patchwork emergence has been detrimental to workforce and service development planning, skill and knowledge transferability, career progression, engagement in research and provisioning of resources (Epilepsy Nurse Specialist Association, 2012; Higgins et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

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

Hutchinson

Ryder

Coleman

et al. 2022

Journal of Clinical Nursing

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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.

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Further advances in epilepsy

2023

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The epilepsy specialist nurse: A mixed-methods case study on the role and activities

Cited by 6 publications

References 18 publications

Parents’/caregivers’ fears and concerns about their child’s epilepsy: A scoping review

Parents’/caregivers’ fears and concerns about their child’s epilepsy: A scoping review

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

Further advances in epilepsy

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