Clients’ experiences of living at home with a mechanical ventilator

Abstract

This paper reports on a study of how clients experience living with home mechanical ventilation and how they experience care and supervision of healthcare personnel. The number of people living at home with mechanical ventilators is increasing, and this is considered a successful approach to reducing incapacity and mortality. Qualitative interviews were conducted with 10 service users in 2006. The informants were 18-75 years old and had varying diagnoses and levels of functioning. The interviews were tape recorded, transcribed and analysed by qualitative content analysis. Two main themes emerged: Theme 1. Having a home ventilator enhances quality of life--a life worth living. The ventilator treatment builds up strength and improves well-being. Participants emphasized that it was important to feel in control of their own situation and had an overriding wish to live a normal and active life; Theme 2. Competence and continuity of healthcare personnel are factors for success. The experience was that competence and follow-up by healthcare personnel varied, and that good quality teaching and information were important. Users of home mechanical ventilators should be active partners in their own care so that their experience is taken into account. It is important for clients having home mechanical ventilation to be empowered and have control in their daily lives, as well as having competent caregivers and continuity of care.