title: User perspectives on issues that influence the quality of daily life of ventilator-assisted individuals with neuromuscular disorders.
abstract: OBJECTIVE
  To identify user perspectives on the issues that impact the quality of the daily lives of ventilator-assisted individuals living in the community.
  
  
  METHODS
  Semistructured interviews were held with 26 Canadian ventilator-assisted individuals (mean age 44+/-14 [SD] years, range 23 to 60 years; mean ventilator experience 18+/-13 years, range three to 53 years) whose disability from neuromuscular conditions necessitated assistance with activities of daily living. Participants described their daily life experiences and perceptions of the factors that limited or enhanced their quality. Interviews were tape-recorded, transcribed and analyzed for emergent codes and themes.
  
  
  RESULTS
  Ventilator users characterized important issues in terms of personal successes and limitations, as well as dependencies on others for daily living. Personal support services, income security, health care and transportation were important positive contributors to their quality of life. Dependency on others was clearly a negative contributor. The ventilator was regarded as a form of assistive technology, similar to a wheelchair. Ventilator users perceived that ventilation was associated with a stigma and negative assumptions about disability, particularly if suctioning was required.
  
  
  CONCLUSIONS
  The majority of participants considered home mechanical ventilation to be a positive benefit for independent living, enhancing their overall health. They were clear as to the issues of importance to them, and formulated recommendations for health care providers and policy makers that could improve the quality of their daily lives. Many of the issues identified in the present report are faced by the growing community of ventilator users.
authors.affiliation: University of Toronto, Department of Physical Therapy, Room 848, 500 University Avenue, Toronto, Ontario M5G 1V7, Canada. dina.brooks@utoronto.ca
authors.forename: Dina
authors.initials: D
authors.lastname: Brooks
authors.forename: Audrey
authors.initials: A
authors.lastname: King
authors.forename: Mark
authors.initials: M
authors.lastname: Tonack
authors.forename: Helen
authors.initials: H
authors.lastname: Simson
authors.forename: Maria
authors.initials: M
authors.lastname: Gould
authors.forename: Roger
authors.initials: R
authors.lastname: Goldstein
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D001294:Attitude to Health; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000523:psychology / Q000534:rehabilitation / Q000628:therapy*; D017060:Patient Satisfaction; D011788:Quality of Life; D012121:Respiration, Artificial / Q000523:psychology