September 23, 2013
Hosted by Dr. Gordon Atherley
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Anna Marie Jaworski is the mother of a son with a severe congenital heart defect. She started a publishing company,www.babyheartspress.com, for the congenital heart defect community. Erin Engwall is the mother of a son, age 4, with Hypoplastic Left Heart Syndrome,www.mynameisjonas09.blogspot.ca. She’s a South Florida radio personality and a freelance writer. They tell us about themselves, their lives and their careers, and their sons and their heart defects. Drawing on their own experience and that of other family caregivers they discuss the challenges created by severe congenital heart defects for babies, growing children, and their families and family caregivers. They describe the responses to the challenges. They say what more they would like to do and see done to improve ways for helping with overcoming the challenges. The share their messages for children as they grow up with heart defects and for families and family caregivers with babies with heart defects.
Family Caregivers Unite!
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Family caregivers are the people who provide care to partners, parents, children, brothers, sisters, cousins, friends, neighbors and even co-workers. They are the people who provide care when everyone else has gone home. They are the people who organize the functioning of the home for the person with special needs, and for the family as a whole. They are the coordinators of care, the managers of appointments, the preventers of loneliness, and the makers of decisions even to the point of Power of Attorney. And they are so often people who themselves are burdened with their own health challenges and who may be in only marginally better health than the persons to whom they are providing family caregiving.
Dr. Gordon Atherley
Dr Gordon Atherley holds the British equivalent of the Canadian PhD and MD degrees, and LLD, Honoris Causa, from Canada’s Simon Fraser University. His awards include Fellow of the Royal Society of Arts, UK. His medical specialties are occupational medicine and public health.
As first President and Chief Executive Officer of the Canadian Centre for Occupational Health and Safety, the Canadian equivalent of the US National Institute of Occupational Safety and Health, he led the creation of Canada’s electronic information service in occupational health and safety, now used in more than 40 countries.
In academia, he held senior, tenured, full-time positions, including departmental chair, in university faculties of physics, engineering, and medicine. He is the author of a textbook and numerous articles and publications.
Since retiring from medical practice, he’s built up Greyhead Associates, which critically researches the safety, effectiveness and fairness of health services for persons with special needs.
Through Virtual Care International, a company of which he’s President, he’s involved in providing sensible technology to family caregivers to help them with their responsibilities, workloads, and concerns.
Now an activist, he urges family caregivers to unite because, more and more, it’s not just their families who depend on them, it’s also the healthcare system as a whole, as it struggles to meet more and more needs of more and more people.