title: Facilitators and Barriers to Noninvasive Ventilation Adherence in Youth with Nocturnal Hypoventilation Secondary to Obesity or Neuromuscular Disease.
abstract: OBJECTIVE
  Many youth struggle with adherence to bilevel noninvasive ventilation (NIV), often shortly after initiation of treatment. Anecdotal evidence suggests youths with comorbid obesity struggle with adherence while youths with comorbid neuromuscular disease demonstrate better adherence rates. The objective of this study was to explore factors relating to bilevel NIV adherence, and to compare these between youths with underlying obesity or neuromuscular disease.
  
  
  METHODS
  An exploratory qualitative approach was used to examine youth and caregivers' experiences with and perceptions of bilevel NIV. Semi-structured interviews (n = 16) of caregivers and youths were conducted. Youths 12 years and older with nocturnal hypoventilation diagnosed on polysomnography and managed with bilevel NIV, with either concurrent obesity or neuromuscular disease were included. Thematic analysis of interview data was conducted using qualitative analysis software.
  
  
  RESULTS
  Factors associated with positive bilevel NIV adherence included previous encouraging experiences with therapy; subjective symptom improvement; familiarity with medical treatments; understanding of nocturnal hypoventilation and its consequences; family and health-care team support; and early adaptation to treatments. Factors associated with poor bilevel NIV adherence included previous negative experiences with therapy, negative attitude towards therapy; difficulty adapting; perceived lack of support from family or health-care team; fear/embarrassment regarding treatment; caregivers not being health-minded; technical issues; side effects; and a lack of subjective symptom improvement.
  
  
  CONCLUSIONS
  The dimensions which most affect adherence to bilevel NIV are those which contribute to youths' conception of feeling "well" or "unwell." Adherence to treatment may hinge largely on the way in which NIV is initially experienced and framed.
  
  
  CONCLUSIONS
  A commentary on this article appears in this issue on page 1355.
authors.affiliation: The University of British Columbia, Vancouver, British Columbia, Canada.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Ennis
authors.affiliation: Clinical Research Unit, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
authors.forename: Kristina
authors.initials: K
authors.lastname: Rohde
authors.affiliation: Centre for Healthy Active Living, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
authors.forename: Jean-Philippe
authors.initials: JP
authors.lastname: Chaput
authors.affiliation: Centre for Healthy Active Living, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.
authors.forename: Annick
authors.initials: A
authors.lastname: Buchholz
authors.affiliation: Clinical Research Unit, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada.|Division of Respiratory Medicine, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.|Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
authors.forename: Sherri Lynne
authors.initials: SL
authors.lastname: Katz
mesh_terms: D000293:Adolescent; D002648:Child; D005260:Female; D006801:Humans; D007040:Hypoventilation / Q000150:complications* / Q000628:therapy*; D008297:Male; D009468:Neuromuscular Diseases / Q000150:complications*; D063087:Noninvasive Ventilation / Q000706:statistics & numerical data*; D009765:Obesity / Q000150:complications*; D010349:Patient Compliance / Q000706:statistics & numerical data*; D017286:Polysomnography
keywords: adherence; neuromuscular; nocturnal hypoventilation; noninvasive ventilation; obesity; pediatric; sleep apnea