Reframing
Disability and
Quality of Life
A Global Perspective
Edited by
Narelle Warren,
& Lenore Manderson.
Unique and timely collection of papers of interest to the broad range of social scientists concerned with chronic illness & disability. Discusses for the first time the lived experience and subjective wellbeing of people with medical conditions and impairments from a variety of cultures across the globe. Addresses the limits of psychometric measurement and the challenges in generating information about quality of life and wellbeing.
The
Book
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.
Review
“This book, consisting of 13 chapters, will be of interest to educators, policy makers, health care providers, people with and without disabilities and their families, and caregivers. … This collection of stories, illustrations, and reports provides an eye-opening experience for the reader. … Reframing Disability and Quality of Life will provide insight regarding disability education, communication, and awareness for professionals in the areas of medicine, health care, disability policy and practice, and community outreach and services and in the field of education.”
Karen A. Myers and Crystal Botkin
PsycCRITIQUES, Vol. 58 (46), November, 2013
The
Authors
Dr Narelle Warren holds a NHMRC Postdoctoral Research Fellowship to investigate trajectories of stroke and Parkinson’s Disease in European- and Indian-Australian communities. Her doctoral research explored the intersection of health, self-management and health-seeking behaviours and practices in an isolated community. More recently, she conducted a large study investigating how people adapt to a lower-limb amputation based in four hospital settings; this involved a detailed qualitative analysis of quality of life measures. Narelle conducts qualitative and ethnographic research into how understandings and experiences of chronic conditions vary according to gender, age, geographical location, and culture. In addition, she is a chief investigator in a study exploring how patients’ perceptions of preventive health change by sociocultural location.
Lenore Manderson is Professor of Medical Anthropology at Monash University. Her interests include the anthropology of chronic conditions and disability, infectious disease in resource- poor settings, gender and sexuality, and questions of embodiment and identity. She was an inaugural ARC Federation Fellow at The University of Melbourne then Monash University. Under this prestigious award, she conducted research on chronic illness, disability, social relationships and well-being, including an inter-disciplinary multi-country study on social and cultural impact of chronic illness and disability in Australia and Southeast Asia. Through this study, she developed an impairment-specific quality of life measure, the PIPP scale. Previously she was Director of the Key Centre for Women’s Health in Society (1999-2002), and prior to that, from 1988-1998, Professor of Tropical Health at The University of Queensland. Lenore’s focus is on postgraduate training, and she has been internationally acknowledged for her commitment to mentoring and training of HDR students; she has supervised to graduation over 60 doctoral students and 40 honours and masters students working in the fields of public health and medical social sciences, in immigrant, Indigenous and majority communities in Australia, and in diverse settings in Asia and Africa. Half of her students are international. She has edited or co-edited 14 collections, and has authored or co-authored some 500 works in total; she is editor of the journal Medical Anthropology.
a table of
Contents
& Authors
Reframing Disability and Quality of Life: Contextual Nuances
Warren, Narelle (et al.)
Uncertainty, Vulnerability, and Isolation: Factors Framing Quality of Life with Aphasia in a South African Township
Legg, Carol (et al.)
Disability and Well-Being in Northern Nigeria
Renne, Elisha P.
The Dignity of Children: How to Evaluate Bodies’ (Im)Permeability
Wainer, Rafael
Who, How, and What? Quality of Life and Psychosocial Cancer Research
Hansen, Helle Ploug (et al.)
Quality of Life and End-of-Life Decisions After Brain Injury
Demertzi, Athena (et al.)
Transforming Social Disability into Normality: Medical Discourses on Kidney Transplantation in Cyprus
Constantinou, Costas S.
Spinal Cord Injury, Sport, and the Narrative Possibilities of Post-traumatic Growth
Sparkes, Andrew C. (et al.)
Narrating a Return to Work After Spinal Cord Injury
Smith-Morris, Carolyn (et al.)
Sports, Disability, and the Reframing of the Post-injury Soldier
Messinger, Seth D.
“Caring for” and “Caring About”: Embedded Interdependence and Quality of Life
Manderson, Lenore (et al.)
Disability and Caregivers’ Inability Among Immigrant Australians
Team, Victoria (et al.)
The Impact of Government on Quality of Life for People with Disabilities in the United States and Guatemala
McFadden, Erica Skogebo