805 resultados para Children - Case studies - Institutional care


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This article considers whether the granting of patents in respect of biomedical genetic research should be conditional upon the informed consent of research participants. It focuses upon several case studies. In Moore v the Regents of the University Of California, a patient sued his physician for breach of fiduciary duty and lack of informed consent, because the doctor had obtained a patent on the patient's cell line, without the patient's authorisation. In Greenberg v Miami Children's Hospital, the research participants, the Greenbergs, the National Tay Sachs and Allied Diseases Association, and Dor Yeshorim brought a legal action against the geneticist Reubon Matalon and the Miami Children's Hospital over a patent obtained on a gene related to the Canavan disease and accompany genetic diagnostic test. PXE International entered into a joint venture with Charles Boyd and the University of Hawaii, and obtained a patent together for ‘methods for diagnosing Pseudoxanthoma elasticum’. In light of such case studies, it is contended that there is a need to reform patent law, so as to recognise the bioethical principles of informed consent and benefit-sharing. The 2005 UNESCO Declaration on Bioethics and Human Rights provides a model for future case law and policy-making.

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The assessment of capacity in the context of wills and advance care planning is a challenging task for modern practitioners with the increase in mentally disabling conditions, such as acquired brain injury. This challenge is only heightened in the situation where the assessment occurs at the client’s deathbed as there are the added elements of urgency, and emotional upheaval at the impending death of a loved one. This situation poses a minefield of problems a legal practitioner should be aware of, involving not only the assessment process but also potential professional liability issues. This presentation will address the practical considerations a legal professional should take into account when in this situation. We will focus on two discrete situations and the issues arising from them: first, where there has been an acquired brain injury and legal capacity is in question; and second, where a spinal injury has occurred which does not affect capacity, rather results in the inability to use conventional forms of communication to communicate his/her instructions. We will examine these case studies with a view to proposing a best practice model for legal practitioners when assessing capacity in this context.

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With the introduction of the PCEHR (Personally Controlled Electronic Health Record), the Australian public is being asked to accept greater responsibility for the management of their health information. However, the implementation of the PCEHR has occasioned poor adoption rates underscored by criticism from stakeholders with concerns about transparency, accountability, privacy, confidentiality, governance, and limited capabilities. This study adopts an ethnographic lens to observe how information is created and used during the patient journey and the social factors impacting on the adoption of the PCEHR at the micro-level in order to develop a conceptual model that will encourage the sharing of patient information within the cycle of care. Objective: This study aims to firstly, establish a basic understanding of healthcare professional attitudes toward a national platform for sharing patient summary information in the form of a PCEHR. Secondly, the studies aims to map the flow of patient related information as it traverses a patient’s personal cycle of care. Thus, an ethnographic approach was used to bring a “real world” lens to information flow in a series of case studies in the Australian healthcare system to discover themes and issues that are important from the patient’s perspective. Design: Qualitative study utilising ethnographic case studies. Setting: Case studies were conducted at primary and allied healthcare professionals located in Brisbane Queensland between October 2013 and July 2014. Results: In the first dimension, it was identified that healthcare professionals’ concerns about trust and medico-legal issues related to patient control and information quality, and the lack of clinical value available with the PCEHR emerged as significant barriers to use. The second dimension of the study which attempted to map patient information flow identified information quality issues, clinical workflow inefficiencies and interoperability misconceptions resulting in duplication of effort, unnecessary manual processes, data quality and integrity issues and an over reliance on the understanding and communication skills of the patient. Conclusion: Opportunities for process efficiencies, improved data quality and increased patient safety emerge with the adoption of an appropriate information sharing platform. More importantly, large scale eHealth initiatives must be aligned with the value proposition of individual stakeholders in order to achieve widespread adoption. Leveraging an Australian national eHealth infrastructure and the PCEHR we offer a practical example of a service driven digital ecosystem suitable for co-creating value in healthcare.

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The Uppsala school of Axel Hägerström can be said to have been the last genuinely Swedish philosophical movement. On the other hand, the Swedish analytic tradition is often said to have its roots in Hägerström s thought. This work examines the transformation from Uppsala philosophy to analytic philosophy from an actor-based historical perspective. The aim is to describe how a group of younger scholars (Ingemar Hedenius, Konrad Marc-Wogau, Anders Wedberg, Alf Ross, Herbert Tingsten, Gunnar Myrdal) colonised the legacy of Hägerström and Uppsala philosophy, and faced the challenges they met in trying to reconcile this legacy with the changing philosophical and political currents of the 1930s and 40s. Following Quentin Skinner, the texts are analysed as moves or speech acts in a particular historical context. The thesis consists of five previously published case studies and an introduction. The first study describes how the image of Hägerström as the father of the Swedish analytic tradition was created by a particular faction of younger Uppsala philosophers who (re-) presented the Hägerströmian philosophy as a parallel movement to logical empiricism. The second study examines the confrontations between Uppsala philosophy and logical empiricism in both the editorial board and in the pages of Sweden s leading philosophical journal Theoria. The third study focuses on how the younger generation redescribed Hägerströmian legal philosophical ideas (Scandinavian Legal Realism), while the fourth study discusses how they responded to the accusations of a connection between Hägerström s value nihilistic theory and totalitarianism. Finally, the fifth study examines how the Swedish social scientist and Social Democratic intellectual Gunnar Myrdal tried to reconcile value nihilism with a strong political programme for social reform. The contribution of this thesis to the field consists mainly in a re-evaluation of the role of Uppsala philosophy in the history of Swedish philosophy. From this perspective the Uppsala School was less a collection of certain definite philosophical ideas than an intellectual legacy that was the subject of fierce struggles. Its theories and ideas were redescribed in various ways by individual actors with different philosophical and political intentions.

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The traditional reductionist approach to science has a tendency to create 'islands of knowledge in a sea of ignorance', with a much stronger focus on analysis of scientific inputs rather than synthesis of socially relevant outcomes. This might be the principal reason why intended end users of climate information generally fail to embrace what the climate science community has to offer. The translation of climate information into real-life action requires 3 essential components: salience (the perceived relevance of the information), credibility (the perceived technical quality of the information) and legitimacy (the perceived objectivity of the process by which the information is shared). We explore each of these components using 3 case studies focused on dryland cropping in Australia, India and Brazil. In regards to 'salience' we discuss the challenge for climate science to be 'policy-relevant', using Australian drought policy as an example. In a village in southern India 'credibility' was gained through engagement between scientists and risk managers with the aim of building social capital, achieved only at high cost to science institutions. Finally, in Brazil we found that 'legitimacy' is a fragile, yet renewable resource that needs to be part of the package for successful climate applications; legitimacy can be easily eroded but is difficult to recover. We conclude that climate risk management requires holistic solutions derived from cross-disciplinary and participatory, user-oriented research. Approaches that combine climate, agroecological and socioeconomic models provide the scientific capabilities for establishment of 'borderless' institutions without disciplinary constraints. Such institutions could provide the necessary support and flexibility to deliver the social benefits of climate science across diverse contexts. Our case studies show that this type of solution is already being applied, and suggest that the climate science community attempt to address existing institutional constraints, which still impede climate risk management.

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Failures in industrial organizations dealing with hazardous technologies can have widespread consequences for the safety of the workers and the general population. Psychology can have a major role in contributing to the safe and reliable operation of these technologies. Most current models of safety management in complex sociotechnical systems such as nuclear power plant maintenance are either non-contextual or based on an overly-rational image of an organization. Thus, they fail to grasp either the actual requirements of the work or the socially-constructed nature of the work in question. The general aim of the present study is to develop and test a methodology for contextual assessment of organizational culture in complex sociotechnical systems. This is done by demonstrating the findings that the application of the emerging methodology produces in the domain of maintenance of a nuclear power plant (NPP). The concepts of organizational culture and organizational core task (OCT) are operationalized and tested in the case studies. We argue that when the complexity of the work, technology and social environment is increased, the significance of the most implicit features of organizational culture as a means of coordinating the work and achieving safety and effectiveness of the activities also increases. For this reason a cultural perspective could provide additional insight into the problem of safety management. The present study aims to determine; (1) the elements of the organizational culture in complex sociotechnical systems; (2) the demands the maintenance task sets for the organizational culture; (3) how the current organizational culture at the case organizations supports the perception and fulfilment of the demands of the maintenance work; (4) the similarities and differences between the maintenance cultures at the case organizations, and (5) the necessary assessment of the organizational culture in complex sociotechnical systems. Three in-depth case studies were carried out at the maintenance units of three Nordic NPPs. The case studies employed an iterative and multimethod research strategy. The following methods were used: interviews, CULTURE-survey, seminars, document analysis and group work. Both cultural analysis and task modelling were carried out. The results indicate that organizational culture in complex sociotechnical systems can be characterised according to three qualitatively different elements: structure, internal integration and conceptions. All three of these elements of culture as well as their interrelations have to be considered in organizational assessments or important aspects of the organizational dynamics will be overlooked. On the basis of OCT modelling, the maintenance core task was defined as balancing between three critical demands: anticipating the condition of the plant and conducting preventive maintenance accordingly, reacting to unexpected technical faults and monitoring and reflecting on the effects of maintenance actions and the condition of the plant. The results indicate that safety was highly valued at all three plants, and in that sense they all had strong safety cultures. In other respects the cultural features were quite different, and thus the culturally-accepted means of maintaining high safety also differed. The handicraft nature of maintenance work was emphasised as a source of identity at the NPPs. Overall, the importance of safety was taken for granted, but the cultural norms concerning the appropriate means to guarantee it were little reflected. A sense of control, personal responsibility and organizational changes emerged as challenging issues at all the plants. The study shows that in complex sociotechnical systems it is both necessary and possible to analyse the safety and effectiveness of the organizational culture. Safety in complex sociotechnical systems cannot be understood or managed without understanding the demands of the organizational core task and managing the dynamics between the three elements of the organizational culture.

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Overview This review of research conducted with supported playgroups was prepared for the Queensland Department of Education, Training and Employment (DETE). The report provides a synthesis of the research on the effectiveness of supported playgroups to improve child, parent, and community outcomes and to identify key features of supported playgroups that support effective outcomes. Supported playgroups are community-based services that provide a low intensity parenting intervention, through regular group sessions for parent-child dyads. Supported playgroups target vulnerable families who may benefit from parenting support. Supported playgroups have common goals to enhance children’s early learning and parental wellbeing. Method A search strategy was devised to identify research studies, nationally and internationally, that involved parent-child group programs for families with young children, delivered under the leadership of an employed facilitator. Academic databases and other data sources were explored for studies conducted in the period from 2004 to 2014. Summary descriptions of the research studies were developed; assessment of research methodologies was made; research evidence on the effectiveness of supported playgroups to improve child, parent, and community outcomes was identified; and comparative analyses of the implementation features of supported playgroups were completed. Findings The search strategy identified 34 research publications, reporting on 29 different programs. Twenty-six of the studies report on research conducted in Australia and eight reported on research conducted in other countries, including the United Kingdom, Canada, and the United States. Three clusters of playgroups were identified: Category 1 - Standard supported playgroups; Category 2 - Mobile playgroups; Category 3 – Supported playgroups with specific interventions. The research studies identified encompassed experimental and non-experimental research designs. The studies of standard supported playgroups and mobile playgroups were most often qualitative studies and modest in scale, in terms of the number of research participants. Experimental and quasi-experimental research designs characterised the studies identified in the category of supported playgroups with specific interventions. Overall, the research studies that were categorised as supported playgroups with specific interventions provided stronger evidence for effectiveness to improve parental behaviour in ways that are known to support children’s early developmental competence. Qualitative studies, including case studies and ethnographic research, documented important features of program delivery, such as the importance of facilitators’ interpersonal skills to positive experiences for families in the playgroups; as well as the important opportunities that the playgroups afforded to vulnerable families to reduce social isolation. Conclusions The potential for supported playgroups to improve a broad range of learning and psychosocial outcomes for children and parents was suggested by many of the research studies. However, the nature of the research designs employed means that it is not possible to conclude that there is strong evidence of the impact of supported playgroups on child, parent, and community outcomes. The qualitative studies did provide rich descriptions about the implementation processes of playgroups and also captured the variability in the delivery of the playgroups in terms of who participated, local contextual factors that impacted on the playgroup experiences, and the nature of the experiences of parents within the playgroups. Research methodologies need to be employed that address the limitations of the studies to date. This would provide more defensible evidence that supported playgroups have an impact over time on outcomes for children, families, and communities. Overall, this area of research remains relatively under-evaluated in terms of rigorous research designs. The identified research studies point to some promising research directions but do not yet enable strong claims to be made about the effectiveness of the standard playgroup or mobile playgroup models to impact on parenting outcomes. Data collected from interview and survey methodologies clearly identifies that supported playgroups are highly acceptable to families. Given the popularity of supported playgroups to engage families across diverse communities, and the reported high levels of satisfaction and benefits identified within many of the research studies, it is clear that the provision of supported playgroups is fulfilling an important community need by providing support to parents with young children. However, there is a need to strengthen the evidence base that supported playgroups are an effective early parenting intervention that improves outcomes for children, parents, and communities.

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The PhD thesis developed an economic model as an integral part of the current Health Impact Assessment (HIA) framework. Based on a Health Production Function approach, the model showed how to estimate economic benefits of positive health gains generated by transport investment programs and transport policies. Using Australian mortality and morbidity statistics and applying econometric analysis, the case study quantified health benefits induced by transport emission abatement policies in dollar terms for the Australian households. Finally, the thesis demonstrated transferability of the economic model through two example case studies, establishing a wider application capacity of the model.

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The study focused on the different ways that forest-related rights can be devolved to the local level according to the current legal frameworks in Laos, Nepal, Vietnam, Kenya, Mozambique and Tanzania. The eleven case studies represented the main ways in which forest-related rights can be devolved to communities or households in these countries. The objectives of this study were to 1) analyse the contents and extent of forest-related rights that can be devolved to the local level, 2) develop an empirical typology that represents the main types of devolution, and 3) compare the cases against a theoretical ideal type to assess in what way and to what extent the cases are similar to or differ from the theoretical construct. Fuzzy set theory, Qualitative Comparative Analysis and ideal type analysis were used in analysing the case studies and in developing an empirical typology. The theoretical framework, which guided data collection and analyses, was based on institutional economics and theories on property rights, common pool resources and collective action. On the basis of the theoretical and empirical knowledge, the most important attributes of rights were defined as use rights, management rights, exclusion rights, transfer rights and the duration and security of the rights. The ideal type was defined as one where local actors have been devolved comprehensive use rights, extensive management rights, rights to exclude others from the resource and rights to transfer these rights. In addition, the rights are to be secure and held perpetually. The ideal type was used to structure the analysis and as a tool against which the cases were analysed. The contents, extent and duration of the devolved rights varied greatly. In general, the results show that devolution has mainly meant the transfer of use rights to the local level, and has not really changed the overall state control over forest resources. In most cases the right holders participate, or have a limited role in the decision making regarding the harvesting and management of the resource. There was a clear tendency to devolve the rights to enforce rules and to monitor resource use and condition more extensively than the powers to decide on the management and development of the resource. The empirical typology of the cases differentiated between five different types of devolution. The types can be characterised by the devolution of 1) restricted use and control rights, 2) extensive use rights but restricted control rights, 3) extensive rights, 4) insecure, short term use and restricted control rights, and 5) insecure extensive rights. Overall, the case studies conformity to the ideal type was very low: only two cases were similar to the ideal type, all other cases differed considerably from the ideal type. The restricted management rights were the most common reason for the low conformity to the ideal type (eight cases). In three cases, the short term of the rights, restricted transfer rights, restricted use rights or restricted exclusion rights were the reason or one of the reasons for the low conformity to the ideal type. In two cases the rights were not secure.

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The Fashion Book is an exciting, readable and comprehensive, all-in-one resource for students of fashion across the English-speaking world. It is designed as an introduction to fashion studies that can be used in a range of fashion courses from fashion studies degrees to fashion modules, and majors in disciplines including cultural studies, cultural sociology, cultural geography, communications and media, anthropology and cultural history. The book will present current writings and research on major topics debates in fashion studies drawing on the literature on fashion theory and incorporating many global case studies (as easy-to-read boxed material). Graphs, tables and diagrams will add texture to the written material. Approximately 200 colour images are planned to generously illustrate the historical and the contemporary tapestry of fashion. A dedicated interactive website will complement the text and ensure that students are in touch with the latest news, issues and trends.

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In order to fully understand the process of European integration it is of paramount importance to consider developments at the sub-national and local level. EU integration scholars shifted their attention to the local level only at the beginning of the 1990s with the concept of multi-level governance (MLG). While MLG is the first concept to scrutinise the position of local levels of public administration and other actors within the EU polity, I perceive it as too optimistic in the degree of influence it ascribes to local levels. Thus, learning from and combining MLG with other concepts, such as structural constructivism, helps to reveal some of the hidden aspects of EU integration and paint a more realistic picture of multi-level interaction. This thesis also answers the call for more case studies in order to conceptualise MLG further. After a critical study of theories and concepts of European integration, above all, MLG, I will analyse sub-national and local government in Finland and Germany. I show how the sub-national level and local governments are embedded in the EU s multi-level structure of governance and how, through EU integration, those levels have been empowered but also how their scope of action has partially decreased. After theoretical and institutional contextualisation, I present the results of my empirical study of the EU s Community Initiative LEADER+. LEADER stands for Liaison Entre Actions de Développement de l'Économie Rurale , and aims at improving the economic conditions in Europe s rural areas. I was interested in how different actors construct and shape EU financed rural development, especially in how local actors organised in so-called local action groups (LAGs) cooperate with other administrative units within the LEADER+ administrative chain. I also examined intra-institutional relations within those groups, in order to find out who are the most influential and powerful actors within them. Empirical data on the Finnish and German LAGs was first gathered through a survey, which was then supplemented and completed by interviewing LAG members, LAG-managers, several civil servants from Finnish and German decision-making and managing authorities and a civil servant from the EU Commission. My main argument is that in both Germany and Finland, the Community Initiative LEADER+ offered a space for multi-level interaction and local-level involvement, a space that on the one hand consists of highly motivated people actively contributing to the improvement of the quality of life and economy in Europe s countryside but which is dependent and also restricted by national administrative practices, implementation approaches and cultures on the other. In Finland, the principle of tri-partition (kolmikantaperiaatte) in organising the executive committees of LAGs is very noticeable. In comparison to Germany, for instance, the representation of public administration in those committees is much more limited due to this principle. Furthermore, the mobilisation of local residents and the bringing together of actors from the local area with different social and institutional backgrounds to become an active part of LEADER+ was more successful in Finland than in Germany. Tri-partition as applied in Finland should serve as a model for similar policies in other EU member states. EU integration changed the formal and informal inter-institutional relations linking the different levels of government. The third sector including non-governmental institutions and interest groups gained access to policy-making processes and increasingly interact with government institutions at all levels of public administration. These developments do not necessarily result in the empowering of the local level.

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The study explores the role of the state in regional integration processes. The question is approached through theoretical discussion and two case-studies - SADC (Southern African Development Community) and the EU. The main research question of the study is, what are the possibilities and problems of the integration process in Southern Africa and how do they differ from the possibilities and problems of the integration process in Europe. The undelrying question of the study is why do states decide to participate in an integration process where they have to limit their sovereignty. Review of the theoretical discussion of the integration studies shows that the integration process is affected by several factors on different levels of the international system. But the state plays a central role in integration processes - integration processes are inititated and carried on by the participatig states. The European integration process shows that the interests of the state can change over time. At the beginning of the integration process, the objective was to strengthen participating states. Later EU member states have decided that it is in their interest to deepen the process even if it has meant limitation of their sovereignty. The determinant factor has been that the member states have considered it to be in their interst to deepen the process. In Southern Africa the integration process is only at the beginning. SADC aims to establish a free trade area by 2008. The biggest challenge is how to implement the integration process so that it benefits all member states in a region that is economically dominated by South Africa. In practice this can be achieved through establishment of corrective mechanisms, which ensure equitable distribution of benefits. This would require deeper integration and South Africa to adapt responsibility towards its regional partners. African integration processes in general have not been as successful as for example the EU. African states have been reluctant to limit their sovereignty in favour of regional organisations.This can be explained by the differences between European and African states. The EU member states have been democracies while African states have been characterised by concentration of power in the executive branch. Furthermore the political systems in Africa have been characterised by vertical clientelist reltionships. As a result it has not been in the interest of the political elite to limit the state sovereignty in favour of regional organisations. In recent years SADC has been relatively succesful in its integration process and reforms, but a lot remains to be done before the implementation of the free trade area can be succesful. The institutional structure and treaties of SADC differ from the structures of the EU. Member states are the main actors of the integration processes. Their differences are reflected in the process and produce different kinds of integration in different parts of the world.

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This chapter addresses the relevance of composing for young children in creating spaces for social agency. It begins with a working definition of agency, outlines forms of agency and what might constrain it. Referring to case studies of particular children, it then goes on to discuss key themes, which illuminate what is possible and what is at stake when children compose. These overlapping themes include identity (sense of self, belonging), positioning (helping, initiating, befriending, “being bright”), voices (made through sound effects, singing, language style, and appropriating from popular culture and digital worlds), play (appropriating, imagining, designing, and creating), and resistance (not participating, staying silent, moving). Two main cases are drawn upon, those of Ta’Von and Gareth, who demonstrate agency in terms of finding spaces of belonging and meaning-making occasions in the classroom and playground. Vignettes from other children are referred to in order to illustrate common themes.

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Migraine is a common disease in children and adolescents, affecting roughly 10% of school-aged children. Recent studies have revealed an increasing incidence of childhood migraine, but migraine remains an underrecognized and undertreated condition in the pediatric population. Migraine attacks are painful and disabling and can affect a child´s life in many ways. Effective drug treatment is usually needed. The new migraine drugs, triptans, were introduced at the beginning of the 1990s and have since been shown to be very effective in the treatment of migraine attacks in adults. Although they are widely used in adults, the acute treatment of migraine in children and adolescents is still based on paracetamol and nonsteroidal anti-inflammatory drugs. Some children can control their attacks satisfactorily with simple analgesics, but at least one-third need more powerful treatments. When this thesis work commenced, hardly any information existed on the efficacy and safety of triptans in children. The study aim of the thesis was to identify more efficient treatments of migraine for children and adolescents by investigating the efficacy of sumatriptan nasal spray and oral rizatriptan compared with placebo in them. Sleep has an impact on migraine in many aspects. Despite the clinical relevance and common manifestation of sleep in the context of migraine in children, very little research data on the true frequency of sleep exist. As sleeping is so often related to childhood migraine, it can be a confounding factor in clinical drug trials of migraine treatments in children and adolescents. How the results of a sleeping child should be analyzed is under continual debate. The aim of the thesis was also to clarify this as well as to evaluate the frequency of sleeping during migraine attacks in children and factors affecting frequency. Both nasal sumatriptan and oral rizatriptan were effective (superior to placebo), and well tolerated in treatment of migraine attacks in children and adolescents aged 8-17 and 6-17 years, respectively. No serous adverse effects were observed. The results of this work suggest that nasal sumatriptan 20 mg and rizatriptan 10 mg can be effectively and safely used to treat migraine attacks in adolescents aged over 12 years if more effective drugs than NSAIDs are needed. No difference was observed in efficacy or safety of nasal sumatriptan and rizatriptan between children aged younger than 12 years and older children, but because the treated number of patients under 12 years is still small, more studies are needed before sumatriptan or rizatriptan can be recommended for use in this population. Sleeping during migraine attacks was very common, and most children at least occasionally slept during an attack. Falling asleep was especially common in children under eight years of age and during the first hour after the onset of attack. Children who were able to sleep soon after attack onset were more likely pain-free at two hours. Sleeping probably both improves recovery from a migraine attack and is a sign of headache relief. Falling asleep should be classified as a sign of headache relief in clinical drug trials when studying migraine treatments in children and adolescents.

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Linking sustainability, ecology and economics, this dissertation explored the decision making process for incorporating biophilic urbanism. Biophilic urbanism refers to the use of natural elements, or biophilic elements, as functional design features in urban landscapes to address climate change issues in rapidly growing economies. Informed by five global case studies, this dissertation introduced a novel term, ‘biophilic services’ to describe various characteristics that link the impact of biophilic elements to value. A model is also presented outlining underlying decision making logic for incorporating biophilic urbanism. These findings have immediate and practical implications for integrating biophilic urbanism into the fabric of the built environment.