Family Caregiving and Cystic Fibrosis

May 6, 2013
Hosted by Dr. Gordon Atherley

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Episode Description

Leona Pinsky trained and worked as a lawyer. She and her husband of 25 years have four children the youngest of whom has cystic fibrosis. She’s a passionate supporter of, for which John Bennett is the Newfoundland & Labrador Regional Director and Provincial Advocate. He’s been a tireless volunteer since his son John was diagnosed with cystic fibrosis in July 2010 at just 2 ½ months old. They describe their lives as parents of children with cystic fibrosis. They explain Cystic Fibrosis Canada’s support for family caregivers and its work generally. They discuss the role of family caregivers with family members living with cystic fibrosis, identify the challenges they face, and the support they need. They say what they intend to do and would like to see done to help family caregivers receive the help they most need in overcoming the challenges created by cystic fibrosis, and share their messages for family caregivers and their family members.

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.

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