Transitions to Home Mechanical Ventilation: The Experiences of Canadian Ventilator-Assisted Adults and Their Family Caregivers

[...]using an ecological framework, we sought to elucidate issues associated with transition to home mechanical ventilation including the barriers to, and facilitators for, transition to home from the perspective of Canadian ventilator-assisted individuals and their family caregivers. Despite their intricate knowledge of the care requirements of their family member and accountability for care in the home environment, family caregivers perceived they had little or no input into the ventilator-assisted individual's plan of care during these critical health encounters within the acute care sector: I told the [emergency department doctor] don't give him more than two liters of oxygen and keep him on BiPAP. (Caregiver 10) Family-clinician discordance conflicted with expectations for patient/ family-centered care. [...]family caregivers worried that health professionals' disapproving attitudes or inexperience with home mechanical ventilation could negatively influence the presentation of treatment options, shared decision-making, and patient outcomes. [...]many participants were surprised by the unavailability of personal support workers experienced in home mechanical ventilation: