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Going home: Clinician perspectives on decision-making in paediatric home mechanical ventilation
Juliette Jeffreys1, Mayukh Rahman1, Danya Vears2,3
1Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Victoria, Australia.
Insights
Clinicians see themselves as advocates for children needing home mechanical ventilation, with families making the final decision. Successful home ventilation relies on subjective, family-centered quality of life considerations.
Area of Science:
- Pediatric Pulmonology
- Respiratory Medicine
- Healthcare Decision-Making
Background:
- Increasing use of home mechanical ventilation for pediatric chronic respiratory failure.
- Lack of standardized clinical decision-making frameworks for long-term home ventilation in children.
Purpose of the Study:
- To explore clinician perspectives on home ventilation decision-making for children.
- To understand the role of home-based care in successful outcomes for pediatric patients on ventilators.
Main Methods:
- Recruited experienced physicians and nurses from Australian pediatric tertiary home ventilation services.
- Conducted semi-structured interviews (February 2019-June 2020) analyzed via inductive content analysis.
Main Results:
- 25 clinicians (17 physicians, 8 nurses) participated.
- Clinicians acted as impartial advocates, deferring ventilation decisions to families.
- Child's quality of life was central but subjectively defined by each family.
Conclusions:
- Provides insight into clinician approaches to initiating home ventilation for children.
- Understanding clinician roles can improve strategies for better patient and family outcomes.
- Further research needed to compare clinician views with patient/family experiences.
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.
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