Ventilator-Assisted Living©

Spring 2002, Vol. 16, No. 1

ISSN 1066-534X

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Read selected articles from this issue ...

Living with SMA in Hong Kong
Mei Ling Fok

Ventilator Users and Health-Related Quality of Life
Helen Simson, MA, Project Coordinator, Toronto, Canada

Airway Clearance Therapy for Neuromuscular Patients with Respiratory Compromise
Louis Boitano, MS, RRT, and Joshua Benditt, MD, Seattle, Washington

NCAHB Update

More on Sleep Studies
Diana Guth, BA, RRT

Ventilator Users, Assisted Living, and Nursing Homes
Respiratory Management Unit at The Health Center at Standifer Place in Chattanooga, Tennessee

Potpourri: Traveling with a ventilator post September 11; The Virtual Museum of the Iron Lung;
Muscular Dystrophy Epidemiology at the CDC

2002 Camps for Ventilator-Assisted Children


Ventilator Users and Health-Related Quality of Life

Helen Simson, MA, Project Coordinator, Toronto, Canada

Funded by a small grant from The GINI Research Fund, this Canadian research project was designed to investigate the perceptions of ventilator users about their personal health-related quality of life and about the influence of mechanical ventilation (MV) on quality of life.

Preliminary findings indicate that the participants generally regard their health and quality of life positively. Most rate their health as good; some rate it as excellent. They report that MV boosts their energy, improves ability to sleep, and supports increased independence.

Several key issues are emerging:

The study is qualitative, relying on the perceptions of the ventilator users to provide insight into the experience of living with MV. To gather these perceptions, we used a structured interview format to probe into participants’ experiences and opinions about their daily lives, their introduction to MV, and their life since initiating MV.

The team has completed 18 in-depth interviews out of our target of 25, with the majority of the interviews conducted in Toronto. The diseases and conditions of the ventilator users include spinal muscular atrophy, neuropathy, amyotrophic lateral sclerosis, Duchenne muscular dystrophy, post-polio, myopathy, and spinal cord injury. The ages range from 23 to 72 years.

We interviewed only non-ambulatory ventilator users needing a high level of support with activities of daily living in order to determine whether ventilator use which requires the additional physical assistance of others might impact further on quality of life.

We also asked what advice the participants would give to others who are contemplating MV and the feedback they would like to provide to medical practitioners about the impact of MV on one’s health and independence. Most participants would encourage others who are facing decisions about MV to inform themselves about their options and assess their current health status, taking into consideration the improvements to energy and sleep that MV can provide.

Their advice to medical practitioners is similar: in order to support decision-making, practitioners need to be well informed about non-acute MV themselves.

The research team includes Mark Tonack, MA, Senior Research Officer, Toronto Rehabilitation Institute, Lyndhurst Centre; Dina Brooks, PhD, Research Associate, West Park Healthcare Centre, and Assistant Professor, Department of Physical Therapy, University of Toronto; Roger Goldstein, MD, Professor of Medicine, University of Toronto; Audrey King, MA, ventilator user and consumer advocate; and interviewer Maria Gould. A final report will be submitted to The GINI Research Fund in June 2002.

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