A narrative review of the experience and decision-making for children on home mechanical ventilation

Technological advances in mechanical ventilation have made home care possible for children requiring long-term ventilation. However, there are ethical and logistical challenges to transitioning home. The aim of this narrative review is to identify the experiences of the children and their families and the decision-making process to embark on home mechanical ventilation. A systematic review of the literature using Medline and OVID databases was conducted. Children <18 years requiring non-invasive ventilation or tracheostomy with ventilation or continuous positive pressure ventilation were included. The initial search yielded 1351 results, 1017 after duplications were removed and 111 after abstracts were reviewed. After applying inclusion and exclusion criteria to full text analysis, 48 references were analysed. The children and families described home ventilation as facilitating better health and functional status. However, they concurrently described social isolation, stigma, financial stress and loss of independence. The decision-making process to embark on home ventilation needs more research.