Episode 23: Hidden Pathways of Chronic Illness
February 14th, 2014
Hidden Pathways of Chronic Illness
In this episode we are rejoined by Nancy Marlett and Sandra Zelinsky, our authors from episode 16: Patients as Partners in Patient Safety. This week they give us an update on the PACER (formerly PERs) initiative and then Sandra describes her PACER project “The Hidden Pathways of Chronic Illness” in detail. Sandra set out to explore the patient experience of chronic illness and in doing so discovers the commonality experienced by patients with chronic illness regardless of illness type.
Through organic discussion and creative sharing during the patient focus groups, Sandra discovers and explores the six hidden pathways experienced by most patients after being diagnosed with a chronic illness:
- Finding yourself in an alien land
- Searching for answers as a way out
- Finding you are on your own
- Searching for meaning
- Presenting your new self
- Understanding you are your own boss
After listening to this podcast, listeners will be able to:
Understand that patients diagnosed with a chronic illness will often undergo a journey through hidden pathways to redefine themselves and learn to live with their disease
Know how a participant in the PACER group undertakes a project and involves patients in improving the healthcare system
Nancy Marlett, PhD
Nancy is part of the Community Rehabilitation and Disability Studies program at the University of Calgary, the first interdisciplinary disability studies program in North America. Prior to this, her career was in Mental Health and as a private consultant for Health and Welfare Canada, Secretary of State, Canada Manpower, Public Guardians and national disability groups such as the Canadian Mental Health Association partnership strategy, and the Independent Living Movement. Nancy initiated a senior-led research project at Kerby Centre when members felt they wanted to learn how to do research so they could challenge the “negative press about aging” of more traditional research. Seniors chose to research resilience using techniques that were developed as part of a Federal Health Institute grant. The book Grey Matters, which is used in this course, was written by the Kerby Seniors, Nancy Marlett and Claudia Emes, and it was launched at the Kerby Centre with the University of Calgary Press Open Access in 2011.
Sandra Zelinsky
Sandra has spent a good portion of her career in the beauty industry, working in world class spas, on cruise lines, teaching for the Calgary Board of Education and finally becoming a business owner. She took a break for a few years and during that time worked with developmentally challenged adults and children. In her “health career”, Sandra has 21 years of experience living with a chronic illness and is 4 years cancer free. Most recently, Sandra has completed a course in Patient Engagement Research and plans on focusing more of her time as a researcher.
Read more
“The Hidden Pathways of Chronic Illness”
The report contains more detail on the the available literature on this subject, the methods that Sandra used, and the experiences and mind maps that were shared by patients during the focus groups.
