Going home: Clinician perspectives on decision-making in paediatric home mechanical ventilation.

AIM: Despite a recent increase in the use of ventilators in the home setting for children with chronic respiratory failure, there is currently no unified approach for clinical decision-making for children requiring long-term mechanical ventilation. The purpose of this study is to understand the clinician's perspective on decision-making around home ventilation for children, and how home-based care contributes to successful outcomes in this population. METHODS: We recruited physicians and home ventilation nurses with at least 2 years' experience working in an Australian paediatric tertiary home ventilation service using professional networks and snowball sampling. Semi-structured interviews were conducted by two researchers between February 2019 and June 2020. Interviews were audio-recorded, transcribed, and analysed using inductive content analysis. RESULTS: Twenty-five individuals participated (17 physicians and 8 home ventilation nurses). Participants viewed themselves as impartial medical advocates in the decision-making process, believing the decision to initiate or cease ventilation belonged to the child's family. While participants held the child's quality of life as the cornerstone of decision-making, quality of life was subjective and family specific. CONCLUSION: These findings provide insight into how clinicians working with children with chronic respiratory insufficiency approach the decision to introduce home-based ventilation. By understanding their role, strategies can be developed to assist them, leading to better outcomes for patients and families. Further research is needed to compare the perspectives of clinicians with the experience of ventilator-assisted children and families in Australia.

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.