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Developing and testing a toolkit of interventions to improve adherence to non-invasive ventilation in children: the

Jessica Russell¹, Elaine Y Chan², Gwyneth Davies³

¹Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.

|November 29, 2024

Insights

This study aims to develop and test interventions to improve adherence to non-invasive ventilation (NIV) for children with sleep disordered breathing (SDB). Findings will help families and clinicians overcome challenges with NIV therapy.

Area of Science:

Pediatric Respiratory Medicine
Sleep Medicine
Clinical Intervention Studies

Background:

Non-invasive ventilation (NIV) is effective for pediatric sleep disordered breathing (SDB).
Poor adherence to NIV can lead to undertreatment of SDB in children.
Few interventions exist to address barriers to NIV adherence in pediatric patients.

Purpose of the Study:

To identify components for a toolkit to address barriers to NIV use in children with SDB.
To assess the feasibility and acceptability of these intervention components to families.
To identify family-important health outcomes associated with NIV use.

Main Methods:

A three-phase mixed-methods study design.
Qualitative data analyzed using the Framework method (NVivo software).
Quantitative data analyzed using descriptive statistics.

Main Results:

This section is not yet available as the study is ongoing.
Feasibility and acceptability data will be collected in phase 2.
Health outcome data will be collected in phase 3.

Conclusions:

This study will inform the development of interventions to improve NIV adherence in children with SDB.
Findings will support better management of SDB and improve quality of life for pediatric patients.
The research will provide valuable insights for families, clinicians, and researchers in pediatric sleep medicine.

Read full analysis

Abstract

Introduction:

Non-invasive ventilation (NIV) is a known effective and safe treatment for children and young people with sleep disordered breathing (SDB). Adherence can be challenging and poor adherence risks undertreatment of SDB. While the risk factors for non-adherence have been widely reported, very few interventions have been tested in any capacity to address barriers to adherence.

Methods And Analysis:

We will conduct a mixed methods study over three phases. The aim is to identify the components of a toolkit of interventions to address some of the barriers to NIV usage in children and young people who have SDB. We will test these components for their feasibility and acceptability to families. We will also aim to identify health outcomes from NIV use that are important to families. Qualitative data will be managed using NVivo software and analysed using the Framework method. Quantitative data will be analysed using descriptive statistics.

Ethics And Dissemination:

The study will run from January 2023 to October 2025. This study has ethics and local site approval. Data will be stored and accessed only by the research team, stored on a secure server. Data will be pseudo-anonymised prior to analysis and presented in a way that no individual can be identified. We will disseminate widely to relevant stakeholders including peer-reviewed journals, presentations to academic and clinical audiences at conferences and meetings and a lay report.

Trial Registration Number:

ISRCTN56845190.

Keywords:

feasibility studies respiratory medicine (see thoracic medicine)sleep medicine

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