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Intro -- SOCIETY, BEHAVIOUR AND EPILEPSY -- SOCIETY, BEHAVIOUR AND EPILEPSY -- Contents -- Preface -- About the Contributors -- Chapter ITowards a Better Understanding of Living with Epilepsy:The Lived Experience of Seizures -- Abstract -- Introduction -- Method -- Results -- General Characteristics of the Participants -- Recognition of Initial Symptoms -- Recognition of Trigger Factors -- Techniques to Stop Seizures -- Predicting and Aborting Seizures -- Discussion -- Experiences of Warning Signs and Predicting Seizures -- Experiences of Seizure Precipitants and Triggers -- Experiences of others Predicting Seizures -- Experiences of Self Control Relating to Seizures -- Differences due to Age, Gender and Seizure Characteristics -- Limitations -- Conclusion -- References -- Chapter IIIndicators of the Social Consequences of Epilepsy -- Abstract -- Introduction -- a. The Need for Accurate Prevalence Data -- b. Using Existing Official Statistics/Data Sources -- c. Quality of Life Issues -- Data Sources and Results -- a. Prevalence Data and Official Statistics -- b. Employment -- c. The Issue of Self-Reporting -- Stigmatisation -- Conclusion -- References -- Chapter IIIFrom Public to Personal: A Social and Ethnographic View of Epilepsy -- Abstract -- Introduction -- New Directions -- Lessons from Cultural Psychiatry -- Modern Portrayals of Epilepsy: In Literature, Arts and Onli -- Conclusion -- References -- Chapter IVQuality of Life in Epilepsy -- Abstract -- Introduction -- Depression -- Psychosocial Adjustment -- Stigma -- Seizure Frequency -- Conclusion -- References -- Chapter VAddressing the Treatment Gap in Epilepsy -- Abstract -- Introduction -- Health Policies Regarding Health Financing and Priorities of Resources -- The Need for Improved Primary Care Systems in Developing Countries.

Epilepsy : definition, syndromes, and treatment / Jordan Kamel and Mark Cook -- Beliefs and perceptions of epilepsy in different cultures / Jaya Pinikahana -- Epilepsy, stigma and society / Graham Scambler -- Who gets treatment for epilepsy? : the political economy of the treatment gap / Christine Walker -- Epilepsy and women's health issues / Line Sveberg R2ste and Erik Taub2ll -- Injuries in epilepsy / Rita Nguyen and Josâe F. Tâellez-Zenteno -- Epilepsy, driving and law / Roy G. Beran -- Epilepsy, culture, identity and wellbeing : a study of the social, cultural and environmental context of epilepsy in Cameroon / Pascale Allotey and Daniel Reidpath -- Knowledge, attitudes and epilepsy / John O. Elliott, Sheri Hart and Christine Charyton -- Employment and epilepsy / Ramon Edmundo D. Bautista and Logan A. Crews -- Epilepsy and physical exercise : how much is too much? / Ricardo Mario Arida, Fulvio Alexandre Scorza and Esper Abräao Cavalheiro -- Economic and psychosocial burden of epilepsy in developing countries / Sanjeev V. Thomas -- Epilepsy and media / Toba Schwaber Kerson

AbstractBased on evidence of the relationship between socioeconomic inequality and inequalities in health, this study provides an example of how inequality is experienced by a group of people with epilepsy and the impacts of out‐of‐pocket costs (OOPs) on their access to essential healthcare. This study examines healthcare inequity based on socioeconomic disadvantage, demonstrated through a sample of people with epilepsy with OOP for Medical Benefits Scheme (MBS) services and Pharmaceutical Benefits Scheme (PBS) medicines. Wave 3 of the Australian Epilepsy Longitudinal Study was conducted with a community sample of 324 people with epilepsy. Medical Benefits Scheme and PBS data were collected for 17 per cent of the sample. Level of MBS and PBS OOPs, proportion of household weekly income and the effects of age, gender and location were analysed. MBS OOP expenses were generally higher than PBS. The proportion of weekly household income for the lowest income group was highest for both MBS and PBS OOPs. Women paid nearly twice the amount of MBS OOP than men. Those over 65 years paid far more for MBS and PBS OOPs than younger people. Rural people paid a significantly lower proportion for MBS than people from the city. In‐depth analysis of 11 people showed that many struggle financially.

AbstractThe deleterious impact of stigma on the well‐being and quality of life of people living with epilepsy (PWE) is well known but given the social nature of stigma, it is important to understand what stigma means to PWE in different social contexts. To date, there are few qualitative studies on the experience of stigma for PWE in Australia and few studies examining social support as a possible mitigating factor. The current study set out to examine (i) PWE's own understanding of stigma, and (ii) whether social support could mitigate experiences of stigma. Stigma was conceptualised according to Scambler's idea of perceived stigma, or threat of discrimination, and internalised stigma. Three‐hundred and forty‐three surveys were received as part of the Australian Epilepsy Longitudinal Survey (AELS). The survey collected quantitative data on stigma and social support. Qualitative data was collected through free‐text responses to the question, "What does stigma mean to you?" Qualitative responses pointed to misunderstanding as a key aspect of stigma. Social support had a greater role in reducing internalised stigma as opposed to perceived stigma. The current study is one of the first to examine an Australian cohort of PWE's understanding of stigma and its relationship to social support.

The United States Federal Government has been conducting guaranteed savings energy savings performance contracts for over 20 years and now relies on ESPC for the majority of its energy efficiency work. Along with a related financed project type, these deals resulted in $4.2 billion of project investment in the five years ending in 2016, a pace that has even accelerated since. Measurement and verification (M&V) on the projects is the key to assuring savings realization and persistence. Perceived as a weakness or burdensome added cost in the early years of the program, M&V has become a strength. All energy conservation measures (ECMs) have some form of measurement – defined as a measured baseline establishment followed by at least one measurement of the main energy-saving parameter taken in the performance period for each ECM. The government's in-house energy consulting office, the Federal Energy Management Program (FEMP), now recommends measurement of these "Option A" M&V ECMs throughout the contract term, usually annually. Moreover, a significantly higher percentage of projects are now characterized by more ambitious M&V, including Option B (all parameter measurement) for most generation (including renewable) and some efficiency measures, and more frequent Option C (whole facility utility bill analysis) for "deep retrofit" projects with multiple, interactive ECMs. Coincident with this progress in M&V has been a much greater embracing of ESPC by the federal agencies, resulting in the enormous rate of projects now executed. This paper traces the evolution of M&V in federal ESPC and argues that the heightened credibility of the savings has contributed significantly to the procurement vehicle's long-term viability. This focus on savings integrity via M&V has been learned over two decades for U.S. federal ESPC, but countries with developing ESPC markets would be wise to emphasize it as their markets emerge, allowing them to avoid some of the "growing pains" experienced in the U.S.

BACKGROUND: The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program. This was to ensure consideration of community values, perspectives and priorities, and knowledge translation for patient care. The CAG was charged with providing a strong community voice for the duration of the program. Appointed members were experienced consumer advocates with developed connections to the community. MAIN BODY: The Alliance progressed from an initial Demonstration Project (2013–2015) to a multifaceted program (2016–2020). The CAG worked strategically to help address complex issues, for example, communication, privacy, informed consent, ethics, patient experience, measurement and evaluation standards and policies, data storage and re-use of genomic data. Many aspects of translating genomics into routine care have been tackled, such as communicating with patients invited to have genomic testing, or their caregivers, and obtaining informed consent, clinical questions across 16 areas of health care, training and education of health and laboratory professionals, genomic data management and data-sharing. Evidence generated around clinical utility and cost-effectiveness led to government funding of testing for complex genetic conditions in children. CONCLUSION: The CAG activities, recorded in a CAG-inspired Activity register, span the full spectrum of information sharing and consultation to co-design and partnership. The CAG were involved at multiple levels of participation and in all tiers of activity including governance, development of policies and procedures, program planning and evaluation. Working relationships were built up and a level of ...