From self-management to shared management in chronic care: an empirical ethics investigation into the lived experience of chronic disease in England

Even within universal health coverage systems, there are significant health inequalities caused by differences in patients’ abilities to adhere to long-term treatments, and inequalities in long-term treatment adherence are correlated with, and aggravate, existing health inequalities. To better understand the mechanisms underlying this cumulative effect of disadvantage, a qualitative empirical ethics study on the lived experience of chronic disease and long-term treatment was conducted within the National Health Service in England. Overall findings suggest that chronic diseases and long-term treatment can threaten belonging to the social world, sense of agency and self-concept or identity. Furthermore, findings also suggest that current views of long-term treatment adherence ignore the dynamism and interdependence underlying the management of chronic disease. Drawing on these findings and adopting a complex systems approach, this thesis describes adjustment to chronic disease as the ongoing effort towards balancing multiple demands to live lives people have reason to value across time. Specifying this ongoing effort contributes to identifying key psychological, social and healthcare-related challenges and injustices faced by people living with chronic disease. Wellbeing is not always best promoted by maximising treatment adherence, so patients do not and should not always prioritise long-term treatment over competing concerns and projects within their lives. Still, it is morally problematic that structural injustice puts the disadvantaged in a position in which they are more likely to lack the freedom to prioritise treatment. By analysing the role of healthcare in patients’ efforts towards balancing competing demands, this work further specifies person-centeredness for chronic care, highlighting the frailty of the illness and treatment processes and the need for continued socially aware support. Building on this, this thesis outlines a normative framework to orient ethically driven chronic care, calling for shared responsibility to ameliorate the cumulative effect of disadvantage amongst people who live with chronic disease

NGOs and poverty reduction in Tamil Nadu : exploring a knowledge-sharing for development framework

Poverty reduction remains a concern in both a global and Indian context, being a major objective of current development planning processes. The aim of this thesis is to explore an alternative post-colonial approach to the application of knowledge management to development, focussed on the problem of poverty reduction in the context of NGOs operating in Tamil Nadu. A qualitative research design was adopted, drawing on multiple sources of data, collected in Tamil Nadu. It was found that a Knowledge Sharing for Development (KS4D) framework emerged as a way how NGOs can more effectively share knowledge

The aims of the primary health care reforms in Finland between 1993-2015: a systematic review

Aims: Empirical research has proven that a strong primary health care (PHC) system produces better health outcomes and therefore, PHC is an important part of a country's health system. This systematic review focuses on the intended aims and targets of PHC reforms conducted in Finland from 1993 onwards. It describes the challenges that the Finnish PHC system has faced, comparing the objectives and the problem with other similar countries, providing lessons from the Finnish experiences for other countries. Methods: A Campbell-styled systematic review was conducted. Databases including Ebsco, Pubmed/MEDLINE, Scopus, Google Scholar and a Finnish health science database Medic were searched. The keywords and MeSH Terms for the review included terms relating to 'health systems', 'primary care', 'reform', and 'Finland' (see Appendix B). English terms were used when using Medline, Scopus and EBSCO, and both Finnish and English terms were used when using Medic. Reference lists of included papers were also searched. Data was extracted and analysed by utilising thematic analysis. Results: 13 relevant papers were found that dealt with PHC policies or reforms implemented in Finland between 1993 and 2015. The aims of the reforms were classified under five themes, which were developed based on a prior scoping review and then tested during data extraction. The themes were: efficient governance and financing, adequate and equitable access, improved quality, increased patient choice and cooperation and integration of services. Conclusions: A number of policies and reforms have been implemented which have directly or indirectly aimed to strengthen the Finnish PHC system. Some policies have intended to strengthen PHC overall while others have focused on only one aspect or challenge. There has recently been a strong tendency to re-centralise health services, and the importance of patient choice and service integration have become increasingly important. Integration and cooperation of different service providers is one of the newest solutions when finding ways to strengthen weak PHC systems. This study shows that in policy success context matters. PHC strengthening needs to be high on the political agenda, and enough resources are needed. This study showed that there have been few durable or sustainable solutions, and further research is needed especially from the overall health systems perspective

Open Mapping towards Sustainable Development Goals

This collection amplifies the experiences of some of the world’s young people who are working to address SDGs using geospatial technologies and multi-national collaboration. Authors from every region of the world who have emerged as leaders in the YouthMappers movement share their perspectives and knowledge in an accessible and peer-friendly format. YouthMappers are university students who create and use open mapping for development and humanitarian purposes. Their work leverages digital innovations - both geospatial platforms and communications technologies - to answer the call for leadership to address sustainability challenges. The book conveys a sense of robust knowledge emerging from formal studies or informal academic experiences - in the first-person voices of students and recent graduates who are at the forefront of creating a new map of the world. YouthMappers use OpenStreetMap as the foundational sharing mechanism for creating data together. Authors impart the way they are learning about themselves, about each other, about the world. They are developing technology skills, and simultaneously teaching the rest of the world about the potential contributions of a highly connected generation of emerging world leaders for the SDGs. The book is timely, in that it captures a pivotal moment in the trajectory of the YouthMappers movement’s ability to share emerging expertise, and one that coincides with a pivotal moment in the geopolitical history of planet earth whose inhabitants need to hear from them. Most volumes that cover the topic of sustainability in terms of youth development are written by non-youth authors. Moreover, most are written by non-majoritarian, entrenched academic scholars. This book instead puts forward the diverse voices of students and recent graduates in countries where YouthMappers works, all over the world. Authors cover topics that range from water, agriculture, food, to waste, education, gender, climate action and disasters from their own eyes in working with data, mapping, and humanitarian action, often working across national boundaries and across continents. To inspire readers with their insights, the chapters are mapped to the United Nations 17 Sustainable Development Goals (SDGs) in ways that connect a youth agenda to a global agenda. With a preface written by Carrie Stokes, Chief Geographer and GeoCenter Director, United States Agency for International Development (USAID). This is an open access book

Improving Frontline Responses to Domestic Violence in Europe

The monograph on improving the response of first responders to domestic violence in Europe aims to identify gaps in the cooperation of first-line responders and deliver recommendations, toolkits and collaborative training for European police organizations and medical and social work professionals. The goal is to improve integrate institutional response to domestic violence. Shared training and adequate risk assessment tools will create a positive feedback loop, increasing reporting rates of domestic violence to police, the medical profession, and community and social work practitioners

Open Mapping towards Sustainable Development Goals

This collection amplifies the experiences of some of the world’s young people who are working to address SDGs using geospatial technologies and multi-national collaboration. Authors from every region of the world who have emerged as leaders in the YouthMappers movement share their perspectives and knowledge in an accessible and peer-friendly format. YouthMappers are university students who create and use open mapping for development and humanitarian purposes. Their work leverages digital innovations - both geospatial platforms and communications technologies - to answer the call for leadership to address sustainability challenges. The book conveys a sense of robust knowledge emerging from formal studies or informal academic experiences - in the first-person voices of students and recent graduates who are at the forefront of creating a new map of the world. YouthMappers use OpenStreetMap as the foundational sharing mechanism for creating data together. Authors impart the way they are learning about themselves, about each other, about the world. They are developing technology skills, and simultaneously teaching the rest of the world about the potential contributions of a highly connected generation of emerging world leaders for the SDGs. The book is timely, in that it captures a pivotal moment in the trajectory of the YouthMappers movement’s ability to share emerging expertise, and one that coincides with a pivotal moment in the geopolitical history of planet earth whose inhabitants need to hear from them. Most volumes that cover the topic of sustainability in terms of youth development are written by non-youth authors. Moreover, most are written by non-majoritarian, entrenched academic scholars. This book instead puts forward the diverse voices of students and recent graduates in countries where YouthMappers works, all over the world. Authors cover topics that range from water, agriculture, food, to waste, education, gender, climate action and disasters from their own eyes in working with data, mapping, and humanitarian action, often working across national boundaries and across continents. To inspire readers with their insights, the chapters are mapped to the United Nations 17 Sustainable Development Goals (SDGs) in ways that connect a youth agenda to a global agenda. With a preface written by Carrie Stokes, Chief Geographer and GeoCenter Director, United States Agency for International Development (USAID). This is an open access book

When the numbers do not add up: Health research and health disparities in Aotearoa New Zealand

Decisions about health policy and services are, in part, informed by research. In this thesis, I argue health research and the systems which generate and then use it, fail to consider marginalised populations. As a consequence, decision-makers in service and policy settings lack appropriate information to address health inequity and in fact contribute to it through their regard for these marginalised populations. To support this argument, I draw on a range of empirical work. I review public records for evidence of marginalised groups’ inclusion in research and the activities that use research to decide policy or service provision. I then examine the role of ethics committees in reviewing justice and the systems and structures that researchers who work with marginalised populations navigate. Using this information, I then look at reasons and potential solutions to this injustice. I scrutinised public records for representation of three case populations considered marginalised in Aotearoa New Zealand (NZ) in evidence-generating activities and evidence-using activities to establish a lack of inclusion. Based on the data available, representation was found to be lacking. In NZ, approved ethics committees have the task of ethically assessing health research that has the potential to create evidence. The National Ethical Advisory Committee (NEAC) of NZ sets out what justice entails in the review and practice of research. I surveyed committee members to understand their views on justice requirements and their review of them. The survey response rate was too low to be representative but provided starting points for discussion. Using an institutional ethnographic method, I analysed interviews with senior researchers (informants) who work with marginalised populations alongside institutional texts to understand informants work and how it sits within the larger system of health research. I theorise that the marketisation of the university and health system within a neoliberal knowledge economy, along with an emphasis on the biomedical, direct research practices in ways counter-intuitive and counter-productive to those working with marginalised groups. Not only that but these research systems create what Miranda Fricker calls an ‘epistemic injustice’ by their privileging of certain kinds of research work over others. Moving from the empirical, the thread of epistemic injustice is then taken up and elaborated. Epistemologies in health research– their foundations, the information they provide, and their limitations are laid out. I argue that the privileging of one kind of knowing is in part based on our established theory of justice narrowing our perspective (especially within a neoliberal environment). Then, I put forward the claim that a shift in justice theory to a Capabilities Approach (CA) that reframes the questions that we need to address and therefore the methods needed to address them, might be more effective in acknowledging health inequity and creating a fairer health research environment. Sen’s CA takes as its foundation the equalising of people’s capabilities to achieve their preferred functionings, recognising the diversity of these functionings and does this on the basis of public discourse and decision-making. This approach to justice in health research requires a more inclusive and patient-centered framework than the current model which in practice is often disease-centric and generalising. I argue a CA framework is likely to not only change the informational environment required to make decisions but liable to improve inequity because it more explicitly asks us to notice it

The Web of Addiction An Exploration of the Complex Physiological, Psychological, Social and Political Forces Involved in the Development of Addictive Behaviours.

This study aimed to critically evaluate contemporary theory on the development of addictive behaviours. It acknowledged the complex dynamic relationships between five key variables including; individual, family, society, "stakeholders" and "addictive" substances in developing an interactive model of addiction. The hypothesis suggested that unitary definitions were inadequate, and that addiction was best understood as a complex phenomenon intimately linked to the prevailing social and political climate. The research employed three complimentary methods of inquiry including; a comprehensive review of relevant literature, a questionnaire administered to a group of adult students (to "reality check" theoretical frameworks) and a semi-structured groupwork session. The principle findings included; that there was a perceived preoccupation with pathological models of addiction, that addictive behaviours may be seen as functional at several levels of society and that drug and alcohol use were seen to be treated dichotomously in Ireland. It was also suggested that the role of gender issues in substance misuse were poorly understood, that the clear link between social disadvantage and problem use was largely ignored by policy makers and that key stakeholders were seen to create the reality of addiction by defining its parameters, diagnosing it and determining appropriate responses

Primary and Secondary Education During Covid-19

This open access edited volume is a comparative effort to discern the short-term educational impact of the covid-19 pandemic on students, teachers and systems in Brazil, Chile, Finland, Japan, Mexico, Norway, Portugal, Russia, Singapore, Spain, South Africa, the United Kingdom and the United States. One of the first academic comparative studies of the educational impact of the pandemic, the book explains how the interruption of in person instruction and the variable efficacy of alternative forms of education caused learning loss and disengagement with learning, especially for disadvantaged students. Other direct and indirect impacts of the pandemic diminished the ability of families to support children and youth in their education. For students, as well as for teachers and school staff, these included the economic shocks experienced by families, in some cases leading to food insecurity and in many more causing stress and anxiety and impacting mental health. Opportunity to learn was also diminished by the shocks and trauma experienced by those with a close relative infected by the virus, and by the constrains on learning resulting from students having to learn at home, where the demands of schoolwork had to be negotiated with other family necessities, often sharing limited space. Furthermore, the prolonged stress caused by the uncertainty over the resolution of the pandemic and resulting from the knowledge that anyone could be infected and potentially lose their lives, created a traumatic context for many that undermined the necessary focus and dedication to schoolwork. These individual effects were reinforced by community effects, particularly for students and teachers living in communities where the multifaceted negative impacts resulting from the pandemic were pervasive. This is an open access book

Equity in mental health care in Britain

This thesis explores equity issues in the mental health field in Britain by initially developing a conceptual structure to define equity in mental health and then analysing data from three national psychiatric morbidity surveys to measure inequalities and inequities in both mental health and in the use of services. Standard methods are used for measuring income-related and social class-related inequalities with reference to many indicators of mental health which represent 'normative' or 'felt' needs for services. Inequity in the use of mental health services is also examined by relating use of services to needs. Analyses of income-related inequalities and equity are carried out with reference to the general population using data from the Psychiatric Morbidity Survey 2000 and with reference to the minority ethnic groups in Britain using data from the survey of Ethnic Minority Psychiatric Illness Rates in the Community 2000. Changes in social class-related inequalities and equity for the general population between 1993 and 2000 are examined using data from the Psychiatric Morbidity Surveys for those two years, in order to see if the policy and practice changes that took place since the beginning of the 1990s in the health and social care sectors had exerted any impact on equity in mental health. The three mental health surveys being cross-sectional do not permit the study of causal pathways between income and mental health. Therefore, in order to understand the links between living standards, health and health care utilisation patterns further, data from a longitudinal study, the British Household Panel Survey on general health are examined using robust theoretical and empirical models. The assumption is that many of the factors associated with general health are also associated with mental health and much of the model that links income, health and health care utilisation behaviour is likely to be relevant for mental health as well