How does a patient with sensory disability – such as a hearing or vision impairment, or both – get effective communication from a health care provider?
Too often, the answer is that they don’t. Communication is crucial for any professional–patient relationship, not least when disability is in the mix. For people living with sensory disability, however, the challenge of knowing what is going on with their healthcare, participating in shared decision making, and retaining an appropriate level of agency, is even greater. Using verbatim testimony from people with first-hand experience of sensory disability, this book explores issues such as accessibility barriers in consent forms, patient information sheets and other paperwork; situational vulnerability to abuse and neglect; and dehumanisation, infantilisation, and disempowerment in care.
Written by Dr Annmaree Watharow MD Ph D , a doctor and author with personal experience of sensory disability, the stories in this book are told using people’s own words, to allow readers to hear directly from the people who most need their own agency. Vital reading for doctors, nurses, health care providers, and social support workers in practice and training, this book will change the way you view sensory disability.
Cuprins
Introduction
Chapter 1: Miscommunication and pain
Chapter 2: The undeniable importance of communication
Chapter 3: Who are we?
Chapter 4: Health threats
Chapter 5: The triple burden of COVID-19
Chapter 6: What really happens in hospitals
Chapter 7: Security. Knowledge. Power.
Chapter 8: The expert-knowers speak
Chapter 9: Respect. Communication. Care.
Chapter 10: Strategies for systemic transformation
Recommended further reading
Suggested learning activities
Despre autor
Dr Jen Smith-Merry is Director of the Centre for Disability Research and Policy at the University of Sydney, Australia. The Centre for Disability Research and Policy produces collaborative research that actively influences policy and practice to improve the lives of people with disability in Australia and the Asia-Pacific and create a better life for people with disability around the world. Jen strongly believes that academic research, policy and service design should be led by people with disability. Jen has published over 100 academic and policy papers and policy focused research has led to significant structural reforms for disability policy in Australia.
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