title: Family caregiver perspectives on caring for ventilator-assisted individuals at home.
abstract: BACKGROUND
  The trend of patients who are invasively ventilated to prefer home care is one that benefits both the patient and the health care system. However, this assumes a role for patients' family members to become informal caregivers.
  
  
  OBJECTIVE
  To explore the impact of caring for a ventilator-assisted individual on informal caregivers.
  
  
  METHODS
  A descriptive design with semistructured caregiver interviews and the Caregiver Burden Inventory were used. Participants were informal caregivers of a family member with a progressive neuromuscular disease on invasive ventilation for at least six months. Transcript coding was performed and regularly reviewed, and recruitment continued until data saturation. Qualitative analysis was based on 'thematic analysis'.
  
  
  RESULTS
  A total of 21 caregivers were interviewed. Five themes developed: a sense of duty; restriction of day-to-day life; physical and emotional burden; training and education; and the need for more paid support. Caregivers described a sense of duty to take care of loved ones, but suffered a significant restriction of their own time with a negative impact on their physical and mental health. The initial transfer home was highlighted as the most stressful part of the process. The Caregiver Burden Inventory scores supported a high level of burden: median 49 (interquartile range 39.5 to 53.0) of a maximum 96.
  
  
  CONCLUSIONS
  Homecare for ventilator-assisted individuals with progressive neuromuscular disease causes significant burden to informal caregivers. Approaches to lessen this burden, such as increased paid care, improved professional support and respite care, may enable home ventilation to be a more sustainable modality of care.
authors.affiliation: Department of Respiratory Medicine, West Park Healthcare Centre, Toronto, Ontario.
authors.forename: Rachel
authors.initials: R
authors.lastname: Evans
authors.forename: Michael A
authors.initials: MA
authors.lastname: Catapano
authors.forename: Dina
authors.initials: D
authors.lastname: Brooks
authors.forename: Roger S
authors.initials: RS
authors.lastname: Goldstein
authors.forename: Monica
authors.initials: M
authors.lastname: Avendano
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D015331:Cohort Studies; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005260:Female; D006304:Health Status; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000628:therapy*; D011788:Quality of Life; D012121:Respiration, Artificial; D012944:Social Support