Ventilator-Assisted Living©
Spring 2002, Vol. 16, No. 1
ISSN 1066-534X
Ventilator-Assisted Living is available with Membership.
Published quarterly in March, June, September and December.
Edited by Joan L. Headley (director@post-polio.org).
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:
- Participants who have a tracheostomy find that restrictions on funding for attendants who can perform suctioning restricts their ability to get out and about. They feel that they would have increased independence if they had attendants who could accompany them on trips out of the house. Many participants who require suctioning rely on family and friends to assist them, which increases their dependency and, in some cases, isolation.
- Medical practitioners are not always well informed about non-acute MV, and this can affect the quality of care that consumers receive, especially during hospitalizations for conditions that are not related to MV. Some participants reported that they delayed or decided against having surgeries (especially those requiring general anaesthetic) because they perceived a risk in going into hospital and being treated by practitioners who do not understand MV.
- Sleep, energy, and independence all improved after the introduction of MV. Participants regard MV as a positive part of their daily lives and appreciate the benefits it provides, rather than perceive it as disruptive or intrusive on their routine.
- Support from family and friends is a significant aspect of satisfaction with their lives. Family and friends provide psychosocial support and supplement the care and services provided by paid personal support workers.
- Participants tend to be, and believe they have to be, highly proactive in informing themselves about how to stay healthy, how to manage their MV, and how to direct attendant care.
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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