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

Author:

Jeffreys Juliette1,Rahman Mayukh1ORCID,Vears Danya23,Massie John2345ORCID

Affiliation:

1. Faculty of Medicine, Dentistry and Health Sciences University of Melbourne Melbourne Victoria Australia

2. Biomedical Ethics Research Group Murdoch Children's Research Institute Melbourne Victoria Australia

3. Department of Paediatrics University of Melbourne Melbourne Victoria Australia

4. Department of Respiratory Medicine Royal Children's Hospital Melbourne Melbourne Victoria Australia

5. Children's Bioethics Centre Royal Children's Hospital Melbourne Melbourne Victoria Australia

Abstract

AimDespite 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.MethodsWe 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.ResultsTwenty‐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.ConclusionThese 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.

Publisher

Wiley

Subject

Pediatrics, Perinatology and Child Health

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