INTRODUCTION

1. Table 2: Basic Demographics Gender Male Female 16 10 Age Under 25 25 – 55 Over 55 Mean age Age Range 5 14 7 44 23 - 66 Diagnoses reported by participants Polio Duchenne Muscular Dystrophy Spinal Muscular Atrophy Spinal Cord Injury Cerebral Palsy ALS Scoliosis Transverse Myelitis 7 6 6 3 1 1 1 1 Intro.& Adjustment to MV DAILY Satisfaction Health Care Advocacy Funding Facilitators Barriers Dissatisfaction LIFE Ventilator Users’ Perspectives on the Important Elements of Quality of Life: A Canadian Qualitative Study Dina Brooks1,2, PhD, Audrey King1, MA, Mark Tonack3, MA, Helen Simson1, MA, Maria Gould1, MA, Roger Goldstein1,2, MD 1Faculty of Medicine, University of Toronto, 2West Park Healthcare Centre, and 3Toronto Rehabilitation Institute, Toronto, Ontario METHODS (cont’d) • The interview instrument was structured to seek information on all areas of HRQL while allowing participants the leeway to bring forward the topics or issues that were highly pertinent to them. • Interviews were tape-recorded, transcribed and coded by the research team using a qualitative analysis program (NUD*IST). • Emergent code and themes were identified and analyzed. • Eleven primary coding categories were developed and are displayed in Table 1. SAMPLE • 26 informants from Toronto and Edmonton were interviewed. • Table 2 summarizes the demographics. • One participant was living in a Rehabilitation Center whereas the rest were living in the community in supported apartment or with family members. • All participants required assistance with activities of daily living. • Our definition of ‘mechanical ventilation’ included the use of equipment that supports ventilation by mean of positive pressure, either invasively (tracheostomy) or non-invasively (a mask, nasal pillows, mouthpieces). It also included phrenic pacers. No participants were currently using negative pressure modes of ventilation. KEY FINDINGS • Figure 1summarizes the relationships between coding categories INTRODUCTION • Home mechanical ventilation has been defined “as the longer term application of ventilatory support to patients who are no longer in acute respiratory failure and do not need the sophistication of the ICU” (1). • The goals of long-term mechanical ventilation are to increase longevity, decrease morbidity, enhance quality of life and maximize cost effectiveness (2). • Health-related quality of life (HRQL) is a term used to indicate an individual’s performance and/or satisfaction in at least one or more of four significant life domains: somatic sensation, physical function, emotional state and social interaction. • The literature on HRQL in individuals who use various forms of mechanical ventilation in the community is scarce. • PURPOSE of the study • To expand knowledge of HRQL of ventilator users living in the community. • MAIN OBJECTIVES of the study • To examine the concept of HRQL and to identify its determinants from the perspective of individuals who use mechanical ventilation in their homes • METHODS • This study involved interviews with Canadian informants who were experienced in using mechanical ventilation at home. Table 1: Coding Framework • Introduction to mechanical ventilation • Adjustment to mechanical ventilation • Daily life • Facilitators for daily life • Barriers in daily life • Satisfaction in daily life • What is needed to improve daily life • MV or Disability as a Factor affecting HRQL • Advice for consumers considering MV • Advice for providers KEY FINDINGS (cont’d) • The study revealed that use of mechanical ventilation was associated with stigma, with assumptions about disability and about what constitutes “normal” healthy lifestyles. • Medical practitioners and the general public tend to regard use of mechanical ventilation as an intrusive burden, a form of life support that technologizes the body to compensate for pathology. “The machine symbolized the fact that hey, you're on life support, and um, you are going to die, you know. If you don't do this, you're going to…” • In contrast, for the individuals who participated in interviews, mechanical ventilation is regarded as a form of assistive technology, similar to a wheelchair. It is perceived as a benefit to independent living, enhancing energy and overall health. "...It (the ventilator) made me very happy, because it made me comfortable and…I wish I’d started long before I did and I could have avoided getting sick so much.” “I discovered it just gave me so much more energy to work throughout the day. I figured what the heck, you know, why struggle when I don't have to.” • Several areas of dissatisfaction associated with technology were identified and focused around: • Size of the ventilators • Noise level of the ventilators • Suctioning “ Well, there’s a lot of stuff you have to bring. You’re looking at a ventilator, …humidifier,…water,…suction catheters,…stuff to clean your trache,…you need to bring extra stuff if something breaks,…it’s the whole nine yards you gotta bring!” CONCLUSION • The results of this study indicate that mechanical ventilator users enjoy a high quality of life. REFERENCES 1. Muir J-F. Home mechanical ventilation. In: Pulmonary Rehabilitation. Eds. Simond AK, Muir J-F, Person DJ. 1996. BMJ publishing group, London England.   2. Donahue WJ, Giovannoni RM, Goldberg AI, et al. Long-term mechanical ventilation. Guidelines for management in the home and at alternate community sites. Report of the ad hoc committee, respiratory care section, ACCP. Chest 1986; 90 (suppl): 1-37. ACKNOWLEDGEMENTS • Financial Support: Supported by the Gazette International Network Institute Figure 1:Relationships between Coding Categories