Research: Disability, Rehabilitation and Continuing Care

Disability, rehabilitation and continuing care ethics research involves critical reflection on ethical issues arising in the special areas of physical medicine, rehabilitation, and complex continuing care. Rehab and continuing care ethics research is a relatively new and rather underdeveloped sub-field of bioethics, particularly in Canada. Until fairly recently, most bioethics research focused on ethical issues arising in emergency and acute health care and research settings. This research trend in bioethics may be due to a perception that, in such contexts, ethical questions are more urgent due to their often “high-tech,” more dramatic, life-and-death nature. In rehab and continuing care contexts – where goals include improving functional outcomes, helping people live with disabilities, and enhancing quality of life–ethical issues are not only plentiful, but they also are increasingly pressing due to demographic trends and concerns regarding social justice.

Barbara Secker, PhD, is Director, Education and Practice at the Joint Centre for Bioethics, Assistant Professor in Occupational Science and Occupation Therapy, and formerly (1998-2008) led a comprehensive ethics program at the Toronto Rehabilitation Institute. Dr. Secker’s recent research efforts have focused on leading an interdisciplinary group of researchers and stakeholders working in the area of disability, rehabilitation and community care ethics. This group first produced a white paper (Barbara Secker, Frank Wagner, Maya Goldenberg, Barbara Gibson, Bob Parke, Jonathan Breslin, Alison Thompson, Jonathan Lear and Peter A. Singer. Ethics of LHINs: Implications for People with Disabilities and Chronic Illnesses, Unversity of Toronto Joint Centre for Bioethics) exploring the ethics of Ontario’s new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. This white paper received attention from Ministry of Health officials, including leaders of the 14 Local Health Integration Networks (LHINs), and was an impetus for the MOHLTC’s “Think Tank on Ethics for LHINs. Dr. Secker is also first author on a “highly accessed” peer-reviewed paper based on this work: Secker B, Goldenberg MJ, Gibson BE, Wagner F, Parke B, Breslin J, Thompson A, Lear JR, Singer PA. 2006. Just regionalisation: Rehabilitating care for people with disabilities and chronic illnesses. BiomedCentral Medical Ethics 7:9. (www.biomedcentral.com/1472-6939/7/9/abstract). Dr. Secker is Co-Principal Investigator (with Dr. Barbara Gibson) on a CIHR-funded research project titled There’s No Place Like Home: What Constitutes an ‘Adequate’ Home Environment for Younger Adults with Physical Disabilities?  The purpose of this pilot study is to undertake an ethical analysis of what constitutes “adequate” home environments for younger adults (ages 18-54) with significant mobility disabilities.

 

Barbara Gibson, PhD, PT is an Assistant Professor in the Department of Physical Therapy, University of Toronto and a Scientist at the Bloorview Research Institute. She coordinates and teaches the Ethics and Professionalism Cross-curricular Theme in the Department of Physical Therapy Professional Masters program. Barbara’s research uses theoretically informed mixed methods to examine the social and ethical dimensions of disability, rehabilitation and community care. Her doctoral work examined the lives and identities of young men with Duchenne muscular dystrophy in relation to their socio-spatial environments and the discourses of disability, masculinity, and technology. Her current research projects explore the relationship between ventilators-users and their personal support workers, social meanings of walking and how they shape rehabilitation for children with cerebral palsy, and how the “quality of life” of disabled children is conceptualized and measured in health research and practice.

 

Kyle Anstey, PhD, is a bioethicist at the University Health Network (UHN). His doctoral research, entitled “An Interactionist Perspective on Disability Avoidance,” investigated the ethical issues that attempts to avoid disability in offspring pose for existing people with disabilities. He found that existing analyses of this issue use problematic understandings of disability, and inadequately consult people with disabilities. His work provides a better basis for understanding and addressing disability-rights critiques of pre-natal testing.

 

During his doctoral candidature, Dr. Anstey also assisted the Australian Research Council (ARC) funded project “Does Prenatal Diagnosis Discriminate Against People with Disabilities?” (Investigators J. Savulescu, L Gillam and C Newell). He is currently examining ethical issues surrounding the treatment of movement disorders.

 

Stephanie Nixon, PhD, MSc, BHScPT, is an Assistant Professor in the Department of Physical Therapy at the University of Toronto and an Associate Researcher with the Health Economics and HIV/AIDS Research Division (HEARD) at the University of KwaZulu-Natal in South Africa.

 

Her doctoral thesis involved a critical public health ethics analysis of the Government of Canada’s international response to HIV/AIDS. Her current research programme is concerned with the intersection of (a) globalization, (b) HIV/AIDS, and (c) disability and rehabilitation. She is helping to lead studies examining the ways in which people with disability perceive the vulnerability to HIV/AIDS in both Canada and South Africa. Stephanie is also co-PI on a study examining the intersections among economic globalization, growth, and vulnerability to HIV/AIDS. She is conducting a quantitative and qualitative evaluation of the iThemba Lethu HIV Prevention Programme in Cato Manor, South Africa. For the last 10 years, Stephanie has also been part of a team conducting Cochrane Collaboration Systematic Reviews on the effects of exercise among people living with HIV/AIDS.