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.

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.

Exploring the impact of child and placement characteristics, carer resources, perceptions and life stressors on caregiving and well-being.

BACKGROUND: The effect of potential protective factors and stressors faced by carers on their well-being and ability to provide care for children in out-of-home-care (OOHC) needs examination. OBJECTIVE: To explore the impact of child and placement characteristics, carer resources, perceptions and stressors on caregiving and well-being; and identify carer group-based trajectories over time. PARTICIPANTS & SETTING: Longitudinal study of up to 1143 carers caring for 1359 children in OOHC in Australia. METHOD: Carers completed questionnaires at 4 waves across 2011-2018 regarding their demographics, various potential stressors, resource availability and support. A composite indicator of caregiving quality was generated. Caseworkers, who manage child placements with carers, and administrative data provided information on placement characteristics, child demographics and history in OOHC. Multilevel modelling and group-based trajectory analyses were conducted, and carer views examined. RESULTS: Potential concern for carer well-being and caregiving was flagged for 12-20% of carers. Increased odds of concern were found for carers in employment, with placements provided by a non-government organisation, and caring for >1 child in OOHC. Odds were lower for carers satisfied with caseworker assistance. Carer responses illuminated how these resources and stressors interact to impact caregiving. Four trajectory groups were identified: Minimal concern (12.7%), No concern (74.5%), Ongoing concern (6.2%) and Fluctuating concern (6.5%). CONCLUSIONS: Effective support for carers is essential to ensuring that children and young people in OOHC can be placed with capable, resilient, and responsive carers. Without adequate support, carers are likely to experience decreased well-being and have difficulty adequately performing their caregiving role.

An overview of systematic reviews to determine the impact of socio-environmental factors on health outcomes of people with disabilities.

People with disabilities are often subject to intersecting layers of social and economic disadvantage and other barriers that drive health inequity. As a result, they frequently experience worse health than people without disabilities, beyond the direct effects of their health condition or impairment. The aim of this overview of systematic reviews was to summarise the evidence on the impact of socio-environmental factors (i.e. social, physical or attitudinal) on the health outcomes of disabled people. A systematic search of five databases (MEDLINE, PsycINFO, Embase, CINAHL and Scopus) for English-language articles from January 2000 to April 2021 was conducted. Abstracts were screened by two reviewers and reviews were critically appraised. Key data were extracted by topic, population, disability type, critical appraisal method, socio-environmental themes and health outcomes. There were 23 systematic reviews identified examining adult (60.9%) or child and young (8.7%) disabled people, with 30.4% not specifying an age range. Reviews examined people with neurological or physical (39.1%), intellectual (17.4%), sensory (8.7%) or a range of (34.8%) disabilities. Three key health outcomes (i.e. access to healthcare, health-promoting behaviour and care quality) and several recurring socio-environmental themes related to the health outcomes of disabled people were identified. Disabled people encounter common social, physical and attitudinal factors that hinder their health outcomes in terms of access to services and quality healthcare. Many preventive health services were identified as either inaccessible or not meeting the needs of disabled people. Greater involvement of disabled people in service design and awareness raising is essential.

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.

Factors impacting hospital avoidance program utilisation in the care of acutely unwell residential aged care facility residents.

BACKGROUND: An existing hospital avoidance program, the Aged Care Rapid Response Team (ARRT), rapidly delivers geriatric outreach services to acutely unwell or older people with declining health at risk of hospitalisation. The aim of the current study was to explore health professionals' perspectives on the factors impacting ARRT utilisation in the care of acutely unwell residential aged care facility residents. METHODS: Semi-structured interviews were conducted with two Geriatricians, two ARRT Clinical Nurse Consultants, an ED-based Clinical Nurse Specialist, and an Extended Care Paramedic. Interview questions elicited views on key factors regarding care decisions and care transitions for acutely unwell residential aged care facility residents. Thematic analysis was undertaken to identify themes and sub-themes from interviews. RESULTS: Analysis of interviews identified five overarching themes affecting ARRT utilisation in the care of acutely unwell residents: (1) resident care needs; (2) family factors; (3) enabling factors; (4) barriers; and (5) adaptability and responsiveness to the COVID-19 pandemic. CONCLUSION: Various factors impact on hospital avoidance program utilisation in the care of acutely unwell older aged care facility residents. This information provides additional context to existing quantitative evaluations of hospital avoidance programs, as well as informing the design of future hospital avoidance programs.

Patient, surgical and hospital factors associated with the presence of a consultant surgeon during hip fracture surgery. Do we know the answer?

BACKGROUND: Provision of quality care can help to reduce adverse health outcomes following hip fracture. While surgical management by either a consultant or junior surgeon has shown inconclusive differences in patient outcomes, consultant presence is often recommended, yet little is known about the factors that influence whether a consultant surgeon is present during hip fracture surgery. The aim of this study is to examine patient, surgical and hospital factors associated with having a consultant surgeon present during hip fracture surgery. METHODS: An examination of hip fracture surgeries of adults aged ≥ 50 years admitted to hospitals in Australia and New Zealand between 1 January 2015 and 31 December 2018 using data from the Australia and New Zealand Hip Fracture Registry was conducted. Multivariable logistic regression was used to examine factors associated with the presence of a consultant surgeon during hip fracture surgery. RESULTS: There were 29 530 hip fracture surgeries 58.1% had a consultant surgeon present (range 8.5-100% by hospital). Patients were more likely to have a consultant surgeon present during surgery if they had private health insurance, were operated on after hours, required total hip replacements or were operated on in hospitals that conducted ≤150 surgeries per year. CONCLUSION: There is variation in the presence of consultant surgeons within Australia and New Zealand during hip fracture surgery, potentially associated with the complexity of surgery and hospital factors. However, further research is needed to determine the optimum level of supervision required based on patient factors and surgical complexity.

Patient and hospital factors influencing discharge destination following hip fracture.

OBJECTIVE: To compare demographics, treatment and health outcomes for individuals hospitalised with a hip fracture and examine predictors of postacute discharge destination. METHODS: A retrospective analysis of data from the Australian and New Zealand Hip Fracture Registry of individuals aged ≥50 years hospitalised with a hip fracture from 2015 to 2018 (n = 29 881). Multinominal logistic regression was used to examine factors associated with discharge destination for individuals from private residences. RESULTS: Advancing age, impaired cognition, reduced walking ability and poorer pre-operative health were predictors for discharge to residential aged care. The odds of discharge to a rehabilitation unit were higher for individuals with extracapsular fractures, treated at major trauma centres or at hospitals with home-based rehabilitation. Individuals in rural areas had higher odds of discharge to another hospital or ward. CONCLUSION: In addition to well-known demographics, injury and treatment factors, non-clinical factors including geographic area of residence also affect discharge destination.

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.

Access to rehabilitation services for older adults living with dementia or in a residential aged care facility following a hip fracture: healthcare professionals' views.

PURPOSE: To enhance understanding of access to rehabilitation services in Australian and New Zealand acute care facilities for older adults living with dementia and/or living in residential aged care facilities (RACFs) following a hip fracture. METHODS: Information on hip fracture rehabilitation was obtained from an online survey of 40 health professionals who were members of the Australian and New Zealand Hip Fracture Registry Network. This information was supplemented with key informant interviews with five geriatricians and five rehabilitation physicians. RESULTS: Availability of hip fracture rehabilitation services differed by region and country. Around one in 10 respondents indicated that their facility had specific rehabilitation protocols for people living in RACFs or who were living with dementia. Barriers to providing hip fracture rehabilitation were commonly related to availability of resources. Rehabilitation pathways were determined according to individual patient characteristics and perceived potential benefit. Decision making was mainly informed by the patient's pre-fracture morbidity and residence. Three key themes and nine sub-themes emerged from the interviews. CONCLUSIONS: The development of consistent decision criteria and pathways for access to hip fracture rehabilitation could provide a standard approach to access to rehabilitation, particularly for patients with cognitive impairment and/or who reside in RACFs.IMPLICATIONS FOR REHABILITATIONNeed to establish evidence-based criteria for patients who will benefit from hip fracture rehabilitation.Consistent decision criteria for access to hip fracture rehabilitation will assist in guiding a standard approach to providing rehabilitation, particularly for patients with cognitive impairment and/or who reside in RACFs.There is a need to ensure the availability of physiotherapy services in RACFs to assist with rehabilitation provision.Rehabilitation provided to patients with cognitive impairment and/or who are living in RACFs should be tailored to their physical and mental ability.

Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia.

OBJECTIVES: This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered. METHODS: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data. FINDINGS: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and shared-care practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17 years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members. CONCLUSION: This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.

A mobile methods pilot study of surgical spaces: 'fit for purpose? Organisational productivity and workforce wellbeing in workspaces in hospital' (FLOURISH).

BACKGROUND: Good workspace design is key to the quality of work, safety, and wellbeing for workers, yet we lack vital knowledge about optimal hospital design to meet healthcare workforce needs. This study used novel mobile methods to examine the concept of Work-as-Done and the effect of workspace-use on healthcare professional practice, productivity, health and safety in an Australian university hospital. METHODS: This pilot study took place in one gastroenterological surgical unit between 2018 and 2019. Data collection involved 50 h of observations and informal conversations, followed by interpretation of five architectural plans and 45 photographs. Fieldnotes were thematically analysed and corroborated by analysis of visual data using a predefined taxonomy. RESULTS: Six themes were identified, revealing spaces that both support and hinder Work-as-Done. Fit-for-purpose spaces facilitated effective communication between staff, patients and families, conferred relative comfort and privacy, and supported effective teamwork. Unfit-for-purpose spaces were characterised by disruptions to work practices, disharmony among team members, and physical discomfort for staff. Staff employed workarounds to manage unfit-for-purpose spaces. CONCLUSION: The results identified negative impacts of negotiating unfit-for-purpose workspaces on the work and wellbeing of staff. While the use of workarounds and adaptations enable staff to maintain everyday working practices, they can also lead to unexpected consequences. Results indicated the need to identify and support fit-for-purpose spaces and minimize the detrimental qualities of unfit-for-purpose spaces. This study showed that mobile methods were suitable for examining Work-as-Done in a fast-moving, adaptive hospital setting.