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Experiences and views of patients, carers and healthcare professionals on using modems in domiciliary non-invasive ventilation (NIV): a qualitative study
  1. Stephanie K Mansell1,2,
  2. Cherry Kilbride2,3,
  3. Martin J Wood4,
  4. Francesca Gowing2 and
  5. Swapna Mandal1,5
  1. 1Thoracic Medicine, Royal Free London NHS Foundation Trust, London, UK
  2. 2Therapy Services, Royal Free London NHS Foundation Trust, London, UK
  3. 3Department of Clinical Sciences, Brunel University, Uxbridge, Middlesex, UK
  4. 4Renaissance Research, Darlington, UK
  5. 5Department of Academic Respiratory Medicine, University College London, London, UK
  1. Correspondence to Stephanie K Mansell; stephanie.mansell1{at}nhs.net

Abstract

Background Advances in technology means that domiciliary non-invasive ventilation (NIV) devices can be remotely monitored via modems in patients’ homes. Possible benefits and challenges of modem technology have yet to be established. This study explored the perspectives and experiences of patients, their carers and healthcare professionals (HCPs) on the addition of modem technology in managing home NIV.

Methods A qualitative study using a combination of focus groups for HCPs and interviews for carers/patients was undertaken. 12 HCPs and 22 patients/carers participated. These focus groups and interviews were audio-recorded, transcribed verbatim and analysed thematically.

Results Five main themes were identified. ‘Surveillance: a paradox of findings’: HCPs were concerned about unduly scrutinising patients’ lives, potentially impacting on HCP patient relationships. Conversely, patients welcomed modem monitoring and did not express concerns regarding invasion of privacy. ‘Sanctions’: HCPs reported the modem increased access to care and allowed appropriate assessment of ongoing treatment. ‘Complacency and ethics’: HCPs expressed concerns patients may become complacent in seeking help due to expectations of modem monitoring, as well as being concerned regarding the ethics of modems. There was a suggestion patients and carers' expectations of monitoring were different to that of clinical practice, resulting in complacency in some cases. ‘Increased time for patient focused care’: HCPs in the focus groups described a number of ways in which using modems was more efficient. ‘Confidence: can be improved with technology’: patients and carers were positive about the impact of the modems on their health and well-being, particularly their confidence.

Conclusion HCPs expressed concerns about surveillance were not corroborated by patients, suggesting acceptability of remote monitoring. Data suggests a need for increased clarity to patients/carers regarding clinical practice relating to responsiveness to modem data. The issue of complacency requires further consideration. Modem technology was acceptable and considered a useful addition by HCPs, patients and carers.

Trial registration number NCT03905382

  • non invasive ventilation
  • respiratory measurement
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Footnotes

  • Contributors SKM: conceived the idea, sourced funding, developed the protocol, sought ethical and other permissions, acted as the principal and chief investigator and developed the manuscript. MJW: developed the protocol, collected the data, analysed the results and contributed to the manuscript development. FG: recruited participants, gained signed informed consent, maintained the site file, assisted in permissions and day to day operational running of the study and contributed to the manuscript. CK: assisted in permissions and day to day operational running of the study and made substantial contributions to the development of the manuscript. SM: developed the protocol, recruited participants and made substantial contributions to the development of the manuscript.

  • Funding This study was partially funded by Philips Respironics UK. The funding provided covered the cost of: postage and packaging for recruitment, the independent researcher who both conducted and analysed the interviews and focus groups, the incentive voucher is provided to patients and carers, and refreshments provided the focus groups. Philips Respironics UK were not involved in the design of the study, the data collection, the data analysis, the interpretation of the data or the preparation of this manuscript.

  • Competing interests SKM and SM have received honorarium from Philips Respironics for providing lectures and education. SKM and SM have received research grants from Philips Respironics.

  • Patient consent for publication Not required.

  • Ethics approval Ethical approval for this study was obtained from East Midlands—Nottingham 2 Research Ethics Committee Reference: 16/EM/0427.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement No data are available. The datasets generated and/or analysed during the current study are not publicly available in order to maintain participant anonymity, but are available from the corresponding author on reasonable request.

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