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ORIGINAL RESEARCH article

Front. Sleep
Sec. Pediatric and Adolescent Sleep
Volume 3 - 2024 | doi: 10.3389/frsle.2024.1459349
This article is part of the Research Topic Women in Pediatric and Adolescent Sleep: Volume II View all 7 articles

The experience of children using long-term non-invasive ventilation: a qualitative study

Provisionally accepted
Deborah Olmstead Deborah Olmstead Allison Carroll Allison Carroll Jennifer Klein Jennifer Klein Joanna E MacLean Joanna E MacLean *
  • University of Alberta, Edmonton, Canada

The final, formatted version of the article will be published soon.

    Objectives: To identify factors to optimize long-term non-invasive ventilation (LT-NIV) use by exploring the experience of children using LT-NIV and their parents. Study Design & Methods: A qualitative framework analysis method was used. Children aged 8-12 years who used LT-NIV for at least 3-months and their parents/guardians were approached to participate. Thematic analysis of data derived from focus group interviews, conducted separately for children and parents, was performed. Findings were coded and grouped into identified themes. Results: Data analysis identified four themes: 1) ‘The double-edged sword’, which identified benefits and challenges of LT-NIV use; 2) ‘Feeling different’, where children and parents described fears, frustrations, and concerns including emotional and social implications, and physical changes; 3) ‘It’s not just about the mask’, highlighted the influence of equipment issues, including the mask interface, headgear, tubing and humidity, and their impact on tolerance and use of LT-NIV; and 4) ‘Through the eyes of experience - children and parents as experts for change’, which captured ideas for the functional and aesthetic improvement of the equipment including the need for pediatric specific technology. Conclusions: LT-NIV use has two sides; it helps to improve lives though requires an investment of time and commitment to ensure success. Investing in pediatric-specific equipment needs to be a priority as do alliances between healthcare providers, children who use LT-NIV, and their families. Future technology development and studies of adherence need to consider the experiences of children and their families to reduce the challenges and support optimal use of LT-NIV.

    Keywords: adherence, focus group, framework analysis, pre-teens, NIV equipment

    Received: 04 Jul 2024; Accepted: 07 Nov 2024.

    Copyright: © 2024 Olmstead, Carroll, Klein and MacLean. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Joanna E MacLean, University of Alberta, Edmonton, Canada

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.