Patients’ with ALS and caregivers’ experiences of non-invasive home ventilation

Abstract

The purpose of this study was to describe the patients’ with ALS and their caregivers’ experiences of non-invasive positive-pressure ventilation. In-depth interviews with seven patients and eight caregivers were analyzed using a qualitative content analysis method. Three main themes emerged: “Getting to know the ventilator”, “Embracing the ventilator” and “Being on a ventilator on a 20–24-h basis”. The patients reported improved sleep and improved activity level but also contradictory emotions as to starting on the ventilator. The ability to stay at home close to the family was mentioned. Findings for the caregivers revealed an initial period of stress and interrupted sleep followed by a period of harmony and relief from stress. When the patient was on the ventilator 20–24 h, the findings indicate an extensive involvement in the care of the patient, as well as dealing with several kinds of technical situations with the ventilator devices causing the caregivers another period of stress. The caregivers revealed a deepened understanding as to how the patients benefited from the non-invasive positive-pressure ventilation (NPPV) treatment. The patients and their caregivers in this study benefited from NPPV in several aspects but the caregivers also experienced periods of stress and interrupted sleep.