Young adults’ narratives about living with home mechanical ventilation – a phenomenological hermeneutical study

Abstract

Purpose An increasing number of children and young adults with complex medical conditions and respiratory failure are treated with home mechanical ventilation (HMV). The current study aimed to describe how young adults using HMV experience their everyday life with the ventilator, their physical impairments and their opportunities for an educational and professional career. Materials and methods Data were collected via narrative interviews with nine young HMV users (3 females and 6 males, aged 18–31 years) in their homes. Two were ventilated invasively, six were ventilated non-invasively and one was treated with continuous positive airway pressure (CPAP) via facemask. Data were analysed using a phenomenological hermeneutical method. Result A multi-professional team contributed to participants’ safety and ability to participate in society through higher education and professional work. A good and valuable life, mostly feeling healthy were experienced but also prejudice and stiffened social society structures. Conclusion The findings of this study prove the importance of having long-standing access to a competent and supportive available multi-professional healthcare team when living with a long-term complex condition. These teams provided well-functioning human and technological support in everyday lives.