Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery.

Introduction: Epilepsy is the most common neurological condition globally. Integrating health and social care is fundamental in epilepsy management, but the scope of progress in this area is unclear. This scoping review aimed to capture the range and type of integrated care components and models in epilepsy management. Methods: Four databases were searched for articles published since 2010 that reported on integrated care in epilepsy. Data were extracted and synthesised into components of integrated care that had been implemented or recommended only. Models of integrated care were identified, and their components tabulated. Results: Fifteen common and interrelated components of integrated care emerged that were aligned with four broad areas: healthcare staff and pathways (e.g., epilepsy nurses); tasks and services (e.g., care coordination); education and engagement (e.g., shared decision making); and technology for diagnosis and communication (e.g., telehealth). Twelve models of integrated care were identified; seven were implemented and five were recommended. Discussion: There is a growing evidence-base supporting integrated, person-centred epilepsy care, but implementation is challenged by entrenched silos, underdeveloped pathways for care, and deficits in epilepsy education. Conclusion: Integrating epilepsy care relies on changes to workforce development and policy frameworks to support whole-of-system vision for improving care.

Strategies to improve care for older adults who present to the emergency department: a systematic review.

BACKGROUND: The aim of this systematic review was to examine the relationship between strategies to improve care delivery for older adults in ED and evaluation measures of patient outcomes, patient experience, staff experience, and system performance. METHODS: A systematic review of English language studies published since inception to December 2022, available from CINAHL, Embase, Medline, and Scopus was conducted. Studies were reviewed by pairs of independent reviewers and included if they met the following criteria: participant mean age of ≥ 65 years; ED setting or directly influenced provision of care in the ED; reported on improvement interventions and strategies; reported patient outcomes, patient experience, staff experience, or system performance. The methodological quality of the studies was assessed by pairs of independent reviewers using The Joanna Briggs Institute critical appraisal tools. Data were synthesised using a hermeneutic approach. RESULTS: Seventy-six studies were included in the review, incorporating strategies for comprehensive assessment and multi-faceted care (n = 32), targeted care such as management of falls risk, functional decline, or pain management (n = 27), medication safety (n = 5), and trauma care (n = 12). We found a misalignment between comprehensive care delivered in ED for older adults and ED performance measures oriented to rapid assessment and referral. Eight (10.4%) studies reported patient experience and five (6.5%) reported staff experience. CONCLUSION: It is crucial that future strategies to improve care delivery in ED align the needs of older adults with the purpose of the ED system to ensure sustainable improvement effort and critical functioning of the ED as an interdependent component of the health system. Staff and patient input at the design stage may advance prioritisation of higher-impact interventions aligned with the pace of change and illuminate experience measures. More consistent reporting of interventions would inform important contextual factors and allow for replication.

Built to last? Barriers and facilitators of healthcare program sustainability: a systematic integrative review.

OBJECTIVE: To identify barriers and facilitators associated with the sustainability of implemented and evaluated improvement programs in healthcare delivery systems. DATA SOURCES AND STUDY SETTING: Six academic databases were searched to identify relevant peer-reviewed journal articles published in English between July 2011 and June 2022. Studies were included if they reported on healthcare program sustainability and explicitly identified barriers to, and facilitators of, sustainability. STUDY DESIGN: A systematic integrative review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement. Study quality was appraised using Hawker's Quality Assessment Tool. DATA COLLECTION/EXTRACTION METHODS: A team of reviewers screened eligible studies against the inclusion criteria and extracted the data independently using a purpose-designed Excel spreadsheet. Barriers and facilitators were extracted and mapped to the Integrated Sustainability Framework (ISF). Frequency counts of reported barriers/facilitators were performed across the included studies. RESULTS: Of the 124 studies included in this review, almost half utilised qualitative designs (n = 52; 41.9%) and roughly one third were conducted in the USA (n = 43; 34.7%). Few studies (n = 29; 23.4%) reported on program sustainability beyond 5 years of program implementation and only 16 of them (55.2%) defined sustainability. Factors related to the ISF categories of inner setting (n = 99; 79.8%), process (n = 99; 79.8%) and intervention characteristics (n = 72; 58.1%) were most frequently reported. Leadership/support (n = 61; 49.2%), training/support/supervision (n = 54; 43.5%) and staffing/turnover (n = 50; 40.3%) were commonly identified barriers or facilitators of sustainability across included studies. Forty-six (37.1%) studies reported on the outer setting category: funding (n = 26; 56.5%), external leadership by stakeholders (n = 16; 34.8%), and socio-political context (n = 14; 30.4%). Eight studies (6.5%) reported on discontinued programs, with factors including funding and resourcing, poor fit, limited planning, and intervention complexity contributing to discontinuation. CONCLUSIONS: This review highlights the importance of taking into consideration the inner setting, processes, intervention characteristics and outer setting factors when sustaining healthcare programs, and the need for long-term program evaluations. There is a need to apply consistent definitions and implementation frameworks across studies to strengthen evidence in this area. TRIAL REGISTRATION: https://bmjopen.bmj.com/content/7/11/e018568 .

Evaluation of RuralkidsGPS; A Novel Integrated Paediatric Care Coordination Model of Care in Rural Australia - a Mixed-Methods Study Protocol.

Introduction: The Kids Guided Personalised Service (KidsGPS) is an integrated model of care coordination for children and young people (CYP) living with medical complexity. After successful implementation in an urban setting, the model of care will be rolled-out at scale to four rural regions in New South Wales, Australia to establish RuralKidsGPS. This paper describes the approach and methods for the outcome and implementation evaluation of RuralKidsGPS. Description: The evaluation aims to assess health, economic and implementation outcomes and processes whilst identifying barriers and enablers to inform future rollouts. Measures of health service utilisation (primary outcome), child health related quality of life and parent/carer experiences will be assessed. The implementation evaluation will occur alongside the outcomes evaluation and is underpinned by the Consolidated Framework for Implementation Research and informed by validated quantitative measures and qualitative interviews with patients, families, healthcare providers and service managers. An economic analysis will determine incremental cost effectiveness ratios for the new model of care using health service utilisation data. Conclusion: RuralKidsGPS, if effective, has the potential to improve equity of access to integrated care for CYP and their families and this protocol may inform other evaluations of similar models of care delivered at scale.

The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.

Motor neurone disease/amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder with no known cure, where death is usually secondary to progressive respiratory failure. Assisting people with ALS through their disease journey is complex and supported by clinics that provide comprehensive multidisciplinary care (MDC). This review aims to apply both a respiratory and a complexity lens to the key roles and areas of practice within the MDC model in ALS. Models of noninvasive ventilation care, and considerations in the provision of palliative therapy, respiratory support, and speech and language therapy are discussed. The impact on people living with ALS of both inequitable funding models and the complexity of clinical care decisions are illustrated using case vignettes. Considerations of the impact of emerging antisense and gene modifying therapies on MDC challenges are also highlighted. The review seeks to illustrate how MDC members contribute to collective decision-making in ALS, how the sum of the parts is greater than any individual care component or health professional, and that the MDC per se adds value to the person living with ALS. Through this approach we hope to support clinicians to navigate the space between what are minimum, guideline-driven, standards of care and what excellent, person-centred ALS care that fully embraces complexity could be. Educational aims: To highlight the complexities surrounding respiratory care in ALS.To alert clinicians to the risk that complexity of ALS care may modify the effectiveness of any specific, evidence-based therapy for ALS.To describe the importance of person-centred care and shared decision-making in optimising care in ALS.

Barriers to and Facilitators of Implementing Guidelines for Detecting Familial Hypercholesterolaemia in Australia.

BACKGROUND: Familial hypercholesterolaemia (FH) is a genetic condition that is a preventable cause of premature cardiovascular morbidity and mortality. High-level evidence and clinical practice guidelines support preventative care for people with FH. However, it is estimated that less than 10% of people at risk of FH have been detected using any approach across Australian health settings. The aim of this study was to identify the implementation barriers to and facilitators of the detection of FH in Australia. METHODS: Four, 2-hour virtual focus groups were facilitated by implementation scientists and a clinicians as part of the 2021 Australasian FH Summit. Template analysis was used to identify themes. RESULTS: There were 28 workshop attendees across four groups (n=6-8 each), yielding 13 barriers and 10 facilitators across three themes: (1) patient related, (2) provider related, and (3) system related. A "lack of care pathways" and "upskilling clinicians in identifying and diagnosing FH" were the most interconnected barriers and facilitators for the detection of FH. CONCLUSIONS: The relationships between barriers and facilitators across the patient, provider, and system themes indicates that a comprehensive implementation strategy is needed to address these different levels. Future research is underway to develop a model for implementing the Australian FH guidelines into practice.

Experience-based codesign approach to improve care in Australian emergency departments for complex consumer cohorts: the MyED project protocol, Stages 1.1-1.3.

INTRODUCTION: Emergency department (ED) care must adapt to meet current and future demands. In Australia, ED quality measures (eg, prolonged length of stay, re-presentations or patient experience) are worse for older adults with multiple comorbidities, people who have a disability, those who present with a mental health condition, Indigenous Australians, and those with a culturally and linguistically diverse (CALD) background. Strengthened ED performance relies on understanding the social and systemic barriers and preferences for care of these different cohorts, and identifying viable solutions that may result in sustained improvement by service providers. A collaborative 5-year project (MyED) aims to codesign, with ED users and providers, new or adapted models of care that improve ED performance, improve patient outcomes and improve patient experience for these five cohorts. METHODS AND ANALYSIS: Experience-based codesign using mixed methods, set in three hospitals in one health district in Australia. This protocol introduces the staged and incremental approach to the whole project, and details the first research elements: ethnographic observations at the ED care interface, interviews with providers and interviews with two patient cohorts-older adults and adults with a CALD background. We aim to sample a diverse range of participants, carefully tailoring recruitment and support. ETHICS AND DISSEMINATION: Ethics approval has been obtained from the Western Sydney Local Health District Human Research Ethics Committee (2022/PID02749-2022/ETH02447). Prior informed written consent will be obtained from all research participants. Findings from each stage of the project will be submitted for peer-reviewed publication. Project outputs will be disseminated for implementation more widely across New South Wales, Australia.

Implementation of consensus-based perioperative care pathways to reduce clinical variation for elective surgery in an Australian private hospital: a mixed-methods pre-post study protocol.

INTRODUCTION: Addressing clinical variation in elective surgery is challenging. A key issue is how to gain consensus between largely autonomous clinicians. Understanding how the consensus process works to develop and implement perioperative pathways and the impact of these pathways on reducing clinical variation can provide important insights into the effectiveness of the consensus process. The primary objective of this study is to understand the implementation of an organisationally supported, consensus approach to implement perioperative care pathways in a private healthcare facility and to determine its impact. METHODS: A mixed-methods Effectiveness-Implementation Hybrid (type III) pre-post study will be conducted in one Australian private hospital. Five new consensus-based perioperative care pathways will be developed and implemented for specific patient cohorts: spinal surgery, radical prostatectomy, cardiac surgery, bariatric surgery and total hip and knee replacement. The individual components of these pathways will be confirmed as part of a consensus-building approach and will follow a four-stage implementation process using the Exploration, Preparation, Implementation and Sustainment framework. The process of implementation, as well as barriers and facilitators, will be evaluated through semistructured interviews and focus groups with key clinical and non-clinical staff, and participant observation. We anticipate completing 30 interviews and 15-20 meeting observations. Administrative and clinical end-points for at least 152 participants will be analysed to assess the effectiveness of the pathways. ETHICS AND DISSEMINATION: This study received ethical approval from Macquarie University Human Research Ethics Medical Sciences Committee (Reference No: 520221219542374). The findings of this study will be disseminated through peer-reviewed publications, conference presentations and reports for key stakeholders.

Autonomous Control of Music to Retrain Walking After Stroke.

BACKGROUND: Post-stroke care guidelines highlight continued rehabilitation as essential; however, many stroke survivors cannot participate in outpatient rehabilitation. Technological advances in wearable sensing, treatment algorithms, and care delivery interfaces have created new opportunities for high-efficacy rehabilitation interventions to be delivered autonomously in any setting (ie, clinic, community, or home). METHODS: We developed an autonomous rehabilitation system that combines the closed-loop control of music with real-time gait analysis to fully automate patient-tailored walking rehabilitation. Specifically, the mechanism-of-action of auditory-motor entrainment is applied to induce targeted changes in the post-stroke gait pattern by way of targeted changes in music. Using speed-controlled biomechanical and physiological assessments, we evaluate in 10 individuals with chronic post-stroke hemiparesis the effects of a fully-automated gait training session on gait asymmetry and the energetic cost of walking. RESULTS: Post-treatment reductions in step time (Δ: -12 ± 26%, P = .027), stance time (Δ: -22 ± 10%, P = .004), and swing time (Δ: -15 ± 10%, P = .006) asymmetries were observed together with a 9 ± 5% reduction (P = .027) in the energetic cost of walking. Changes in the energetic cost of walking were highly dependent on the degree of baseline energetic impairment (r =- .90, P < .001). Among the 7 individuals with a baseline energetic cost of walking larger than the normative value of healthy older adults, a 13 ± 4% reduction was observed after training. CONCLUSIONS: The closed-loop control of music can fully automate walking rehabilitation that markedly improves walking after stroke. Autonomous rehabilitation delivery systems that can safely provide high-efficacy rehabilitation in any setting have the potential to alleviate access-related care gaps and improve long-term outcomes after stroke.

Groundhog Day in the emergency department: A systematic review of 20 years of news coverage in Australia.

This study examined how the Australian news media have portrayed public hospital Emergency Departments (EDs) over the last two decades. A systematic review and media frame analysis, searching Factiva and Australia and New Zealand News Stream for digital and print news articles published between January 2000 and January 2020. Eligibility criteria were (1) discussed EDs in public hospitals; (2) the primary focus of the article was the ED; (3) focused on the Australian context; (4) were published by one of the Australian state-based news outlets (e.g., The Sydney Morning Herald, Herald Sun). A pair of reviewers independently screened 242 articles for inclusion according to the pre-established criteria. Discrepancies were resolved via discussion. 126 articles met the inclusion criteria. Pairs of independent reviewers identified frames in 20% of the articles using an inductive approach to develop a framework for coding the remaining articles. News media rely heavily on reporting problems within and with the ED, while also proposing a cause. Praise for EDs was minimal. Opinions were primarily from government spokespeople, professional associations, and doctors. ED performance was often reported as fact, with no reference to the source of the information. Rhetorical framing devices, such as hyperbole and imagery, were used to emphasise dominant themes. The negative bias inherent in news media reporting of EDs could potentially damage public awareness of ED functioning, with implications for the likelihood of the public's accessing ED services. Like in the film Groundhog Day, news media reporting is stuck in a loop reporting the same narrative over and over again.

Rates of adherence to cancer treatment guidelines in Australia and the factors associated with adherence: A systematic review.

Adherence to cancer treatment clinical practice guidelines (CPGs) varies enormously across Australia, despite being associated with improved patient outcomes. This systematic review aims to characterize adherence rates to active-cancer treatment CPGs in Australia and related factors to inform future implementation strategies. Five databases were systematically searched, abstracts were screened for eligibility, a full-text review and critical appraisal of eligible studies performed, and data extracted. A narrative synthesis of factors associated with adherence was conducted, and the median adherence rates within cancer streams calculated. A total of 21,031 abstracts were identified. After duplicates were removed, abstracts screened, and full texts reviewed, 20 studies focused on adherence to active-cancer treatment CPGs were included. Overall adherence rates ranged from 29% to 100%. Receipt of guideline recommended treatments was higher for patients who were younger (diffuse large B-cell lymphoma [DLBCL], colorectal, lung, and breast cancer); female (breast and lung cancer), and male (DLBCL and colorectal cancer); never smokers (DLBCL and lung cancer); non-Indigenous Australians (cervical and lung cancer); with less advanced stage disease (colorectal, lung, and cervical cancer), without comorbidities (DLBCL, colorectal, and lung cancer); with good-excellent Eastern Cooperative Oncology Group performance status (lung cancer); living in moderately accessible places (colon cancer); and; treated in metropolitan facilities (DLBLC, breast and colon cancer). This review characterized active-cancer treatment CPG adherence rates and associated factors in Australia. Future targeted CPG implementation strategies should account for these factors, to redress unwarranted variation particularly in vulnerable populations, and improve patient outcomes (Prospero number: CRD42020222962).

Innovative models of healthcare delivery: an umbrella review of reviews.

OBJECTIVE: To undertake a synthesis of evidence-based research for seven innovative models of care to inform the development of new hospitals. DESIGN: Umbrella review. SETTING: Interventions delivered inside and outside of acute care settings. PARTICIPANTS: Children and adults with one or more identified acute or chronic health conditions. DATA SOURCES: PsycINFO, Ovid MEDLINE and CINAHL. PRIMARY AND SECONDARY OUTCOME MEASURES: Clinical indicators and mortality, healthcare utilisation, quality of life, self-management and self-care and patient knowledge. RESULTS: A total of 66 reviews were included, synthesising evidence from 1272 primary studies across the 7 models of care. Virtual care was the most common model studied, addressed by 47 (73%) of the reviews. Common outcomes evaluated across reviews were clinical indicators and mortality, healthcare utilisation, self-care and self-management, patient knowledge, quality of life and cost-effectiveness. The findings indicate that the innovative models of healthcare we identified in this review may be effective in managing patients with a range of acute and chronic conditions. Most of the included reviews reported evidence of comparable or improved care. CONCLUSIONS: A consideration of local infrastructure and individual patient characteristics, such as health literacy, may be critical in determining the suitability of models of care for patients and their implementation in local health systems. TRIAL REGISTRATION NUMBER: 10.17605/OSF.IO/PS6ZU.

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.

Enhancing Neuroplasticity in the Chronic Phase After Stroke: Effects of a Soft Robotic Exosuit on Training Intensity and Brain-Derived Neurotrophic Factor.

Objective: High intensity training may enhance neuroplasticity after stroke; however, gait deficits limit the ability to achieve and sustain high walking training intensities. We hypothesize that soft robotic exosuits can facilitate speed-based gait training at higher intensities and longer durations, resulting in a corresponding increase in circulating brain-derived neurotrophic factor (BDNF). Results: Eleven individuals >6-mo post-stroke completed a two-session, pilot randomized crossover trial (NCT05138016). Maximum training speed (Δ: 0.07 ± 0.03 m/s), duration (Δ: 2.07 ± 0.88 min), and intensity (VO2 peak, Δ: 1.75 ± 0.60 ml-O2/kg/min) significantly increased (p < 0.05) during exosuit-augmented training compared to no-exosuit training. Post-session increases in BDNF (Δ: 5.96 ± 2.27 ng/ml, p = 0.03) were observed only after exosuit-augmented training. Biomechanical changes were not observed after exosuit-augmented training; however, a deterioration in gait propulsion symmetry (%Δ: -5 ± 2 %) and an increase in nonparetic propulsion (Δ: 0.9 ± 0.3 %bw) were observed (p < 0.05) after no-exosuit training. Conclusion: Soft robotic exosuits facilitate faster, longer duration, and higher intensity walking training associated with enhanced neuroplasticity.

Health Promotion and Wellness in Neurologic Physical Therapy: Strategies to Advance Practice.

BACKGROUND AND PURPOSE: Neurologic physical therapy (PT) can assist people with neurologic conditions and injuries to optimize their health and well-being by addressing barriers at the individual, relationship, community, and societal levels. The purpose of this special interest article is to provide consensus-driven strategies to address barriers to implementing health promotion and wellness (HPW)-related neurologic PT practice. SUMMARY OF KEY POINTS: Environmental scan, literature review, and expert input were used to determine barriers and develop strategies. Barriers include lack of time; low knowledge, self-efficacy, and awareness; client complexity; and lack of HPW resources; as well as concerns regarding payment and scope of practice. Four key strategies emerged: (1) develop and disseminate a consensus-based scope of practice for HPW in neurologic PT; (2) increase knowledge of resources related to HPW; (3) promote delivery models for HPW-related neurologic PT; and (4) encourage advocacy, community building and partnership along the continuum of care. RECOMMENDATIONS FOR CLINICAL PRACTICE: Clinicians should practice to their full scope of HPW-related PT practice. This includes optimizing movement, including physical activity and fitness, as well as reinforcing the importance of healthy sleep, nutrition, stress, and smoking cessation. These activities address primary, secondary, and tertiary prevention. Clinicians are encouraged to report their experiences with HPW-focused delivery models and outcomes. Additional research is needed to understand the full impact of HPW on PT practice (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A364).

Too much theory and not enough practice? The challenge of implementation science application in healthcare practice.

BACKGROUND: Implementation science (IS) should contribute to maintaining high standards of care across healthcare systems and enhancing care practices. However, despite the evident need for greater and more rapid uptake and integration of evidence in practice, IS design and methodology fall short of the needs of effective translation. AIM: In this paper we examine what it is about IS that makes it so appealing for effective uptake of interventions in routine practice, and yet so difficult to achieve. We propose a number of ways that implementation scientists could build mutual relationships with healthcare practitioners and other stakeholders including public members to ensure greater shared care practices, and highlight the value of IS training, collaborative educational events, and co-designed research. DISCUSSION: More consideration should be given to IS applications in healthcare contexts. Implementation scientists can make a valuable contribution by mobilizing theory and improving practice. However, goals for an evidence-based system may be more appropriately achieved through greater outreach and collaboration, with methods that are flexible to support rapid implementation in complex adaptive systems. Collective learning and mutual trust can be cultivated by embedding researchers into healthcare services while offering greater opportunities for practitioners to learn about, and engage in, implementation research. CONCLUSION: To bridge the worlds of healthcare practice and IS, researchers could be more consistent in the relationships they build with professionals and the public, communicating through a shared language and co-joining practical approaches to effective implementation. This will build capacity for improved collaboration and foster respectful, interdisciplinary relationships.

Peer support and social network groups among people living with epilepsy: A scoping review.

BACKGROUND: Peer support is a unique connection formed between people who share similar experiences of illness. It is distinct from, but complementary to other forms of support or care provided by family and friends, healthcare professionals, and other service providers. The role of peer support in contributing to the wellbeing and care of people living with epilepsy (PLWE) is increasingly recognized, including via online networks and group therapy. However, little overall synthesis is available to map and conceptualize the different ways peer support contributes to the wellbeing or care of PLWE, or how it occurs via formally and informally organized social network settings. METHODS: A scoping review of peer-reviewed literature published between 1998 and 2021 was conducted using Medline, Psychinfo, Embase, Scopus, and CINAHL databases. Included studies comprised empirical research that involved people with epilepsy as the primary participants; included 'peer social support' in the study question or study setting, and included outcome measures related to peer social support or peer-related groupings. RESULTS: A total of 17 articles were included in the review. The functions of peer support for PLWE can be described as either emotional or instrumental. Emotional peer support includes a sense of empathy and encouragement gained from another person with a shared experience of illness, which can help to improve confidence for those challenged by isolation and stigma. Instrumental peer support refers to the more practical and tangible support provided by peers about treatment and support services, which can improve self-management and clarify misinformation. The mechanisms by which peer support and peer social networks materialize includes face-to-face meetings, online group gatherings, and telephone calls. As well as through organized channels, peer support can be fostered incidentally through, for example, research participation, or in clinical settings. Barriers to PLWE receiving opportunities for peer support include the perceived stigma of living with epilepsy, the high cost of transportation, or poor access to the internet to reach and meet others; enablers include the anonymity afforded by online forums and perceived trust in one's peers or forum organizers. CONCLUSIONS: This nuanced conceptualization of the different types of peer support and peer support networks, as well as the variety of barriers and enablers of peer support for PLWE, will serve to inform more effectively designed clinical care practices and service delivery tailored to the needs of PLWE. This review will inform future research in peer support as an important and emerging area of investigation.

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.