Background The COVID-19 pandemic, the GOSH hospital construction programme and industrial action in 2023 have changed aspects of care for children treated for sleep disordered breathing (SDB) using non-invasive ventilation (NIV). This patient population continues to increase, supported by a hospital-based specialist NIV team and has a wide range of clinical conditions, high levels of co-morbidities and medical complexity. This paper presents the findings from two studies asking parents about their child’s NIV care: a survey from the NIV Adherence Study, conducted in 2020 and preliminary results from interviews with parents and children and young people (CYP) during the ongoing SPIRITUS study.

Method All eligible parents were invited to complete a survey; data were analysed using descriptive statistics and non-parametric tests. A sample of parents and children were invited to participate in semi-structured interviews, using a sampling matrix. Verbatim transcripts were analysed using framework analysis. Parents and CYP were asked to identify potential interventions that could help their child use NIV, changes to their medical device and NIV service.

Results 125 parents (49% response rate) completed a survey and n=4 parents and n=3 parents and children completed a semi-structured interview. Parents’ recommendations focused on improving their ability to care for their child at home, rather than increasing hospital based care or bringing hospital staff into the home. Parents suggested bespoke masks, remote monitoring, troubleshooting ventilator issues and ventilator settings changes, as well as device improvements and automated machine parts delivery. Parents would also benefit from sharing and hearing other families’ experiences with NIV.

Conclusion Parents’ recommendations focused on reducing some of the known side effects of NIV, keeping their child out of hospital, reducing human error and streamlining medical information from their child to the hospital’s NIV team. This is in line with the virtual wards concept.

Acknowledgements for funding or support The NIV Adherence Study was funded by the GOSH Children’s Charity. The SPIRITUS study is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR204106). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. This work is supported by the NIHR GOSH BRC. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.