Reframing Disability and Quality of Life

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 studentsand 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.

From the reviews: "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)

• Preface and Acknowledgements.- List of Tables.- List of Figures.- Prologue - Devva Kasnitz.- Reframing disability and quality of life: Contextual nuances - Narelle Warren and Lenore Manderson.- Stroke and aphasia in a South African Township - Carol Legg and Claire Penn.- Disability and wellbeing in Northern Nigeria - Elisha P. Renne.- Children’s dignity of life: How to evaluate bodies’ (im)permeability - Rafael Wainer.- Who, how and what? Quality of life and cancer research - Helle Ploug Hansen and Tine Tjørnhøj-Thomsen.- Quality of life and end of life decisions after brain injury - Athena Demertzi, Olivia Gosseries, Didier Ledoux, Steven Laureys and Marie-Aurélie Bruno.- Kidney transplantation in Cyprus: A culture of constructing and reconstructing normality - Costas S. Constantinou.- Spinal cord injury, sport, and the narrative possibilities of posttraumatic growth - Andrew C. Sparkes and Brett Smith.- Narrating a return to work after spinal cord injury - Carolyn Smith-Morris, Gilberto Lopez, Lisa Ottomanelli and Lance Goetz.- Sports, disability and the re-framing of the post-injury soldier - Seth D. Messinger.- Care, dependency and quality of life - Lenore Manderson and Narelle Warren.- Disability and caregivers’ inability among immigrant Australians - Victoria Team and Milica Markovic.- The impact of government on quality of life for people with disabilities in the U.S. and Guatemala - Erica Skogebo Edwards.- About the authors.- Index