Official websites use. Share sensitive information only on official, secure websites. Telephone , fax , e-mail rgoldstein westpark. The trend of patients who are invasively ventilated to prefer home care is one that benefits both the patient and the health care system.
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. 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 Homecare for ventilator-assisted individuals with progressive neuromuscular disease causes significant burden to informal care-givers. 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.
