Reframing Disability and Quality of Life: A Global Perspective (Social Indicators Research Series Book 52)

This volume brings together two parallel fields of interest. One is the understanding among psychologists and other social scientists of the limits to psychometric measurement, and the challenges in generating information about quality of life and wellbeing that enable comparison across time and place, at both individual and population levels. The second is the interest among anthropologists and others in the lived experience of chronic illness and disability, including the unpredictable fluctuations in perceived health and capability. Chronic conditions and physical impairments are assumed to impact negatively on people’s quality of life, affecting them psychologically, socially and economically. While some of these conditions have declined in prevalence, as a result of prenatal diagnosis, early successful interventions, and changes in medical technology and surgery, many of these conditions are on the increase as a consequence of improved life-saving medication and technology, and greater longevity. ‘Quality of life’ is often used as an indicator for successful and high quality health services, and good access to medical attention and surgery – for hip replacements or laser surgery to improve vision, for instance. But it is also used as an argument against interventions, when such interventions are seen to prolong life for its own sake. Yet we also know that people vary their idea of quality as a result of the context of fluctuations in their own health status, the presence or absence of pain or discomfort, and as a result of variations in social and economic contextual factors. In exploring these questions, this volume contributes to emerging debates related to individual health outcomes, but also to the social and other individual determinants that influence everyday life. Understanding these broader contextual factors will contribute to our knowledge of the kinds of services, support systems, and infrastructure that provide people with good ‘quality of life’ and a sense of wellbeing, regardless of their physical health, capability and functioning. The volume includes scholars from all continents who have been encouraged to think critically, and to engage with the descriptive, methodological, social, policy and clinical implications of their work. "Chronic conditions and physical impairments can take a psychological, social and economic toll, and are assumed to diminish a person's quality of life. But 'quality of life' is an ambiguous phrase. Some use the term as an indicator for successful and high quality health services, including good access to medical attention and surgery; others use the term to argue against medical interventions that are seen to prolong life for its own sake. The meaning of 'quality of life' varies from person to person, and so is contextually fluid: it may be shaped by health status, presence or absence of pain, happiness and acceptance, or fluctuations in social and economic status. The authors in this book offer a unique and timely collection of papers that address many of these issues, in the context of the lived experience and subjective wellbeing of people with a range of medical conditions from very different cultural and economic environments. In doing so, they address the limits of psychometric measurement and the challenges in generating information about quality of life and wellbeing at both individual and population levels. Authors confront the obstacles of interpreting health outcomes among people of different cultures, ages, genders and health statuses, so supplementing quantitative data with rich ethnographic discussion and illustrating the value of mixed methods research. This book is fundamental to the emerging debates related to individual health outcomes. In striving to understand the broader contextual factors of chronic illness and disability, this volume will contribute to our knowledge of the services, support systems and infrastructure that provide a higher quality of life to people, regardless of their physical health, capability and functioning."--Publisher's website Front Matter....Pages i-xv Reframing Disability and Quality of Life: Contextual Nuances....Pages 1-16 Uncertainty, Vulnerability, and Isolation: Factors Framing Quality of Life with Aphasia in a South African Township....Pages 17-37 Disability and Well-Being in Northern Nigeria....Pages 39-59 The Dignity of Children: How to Evaluate Bodies’ (Im)Permeability....Pages 61-78 Who, How, and What? Quality of Life and Psychosocial Cancer Research....Pages 79-93 Quality of Life and End-of-Life Decisions After Brain Injury....Pages 95-110 Transforming Social Disability into Normality: Medical Discourses on Kidney Transplantation in Cyprus....Pages 111-128 Spinal Cord Injury, Sport, and the Narrative Possibilities of Posttraumatic Growth....Pages 129-143 Narrating a Return to Work After Spinal Cord Injury....Pages 145-162 Sports, Disability, and the Reframing of the Post-injury Soldier....Pages 163-178 “Caring for” and “Caring About”: Embedded Interdependence and Quality of Life....Pages 179-193 Disability and Caregivers’ Inability Among Immigrant Australians....Pages 195-210 The Impact of Government on Quality of Life for People with Disabilities in the United States and Guatemala....Pages 211-231 Back Matter....Pages 233-243