{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T16:06:17Z","timestamp":1783008377271,"version":"3.54.5"},"reference-count":28,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2025,1,29]],"date-time":"2025-01-29T00:00:00Z","timestamp":1738108800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Chron Respir Dis"],"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:p>Background: The use of non-invasive ventilation (NIV) in patients with advanced cystic fibrosis (CF) has increased in recent years. Research evidence supports its clinical benefits, but less is known about the patients\u2019 experience of its long-term use in a domiciliary setting.<\/jats:p>\n                  <jats:p>Objective: To investigate patients\u2019 lived experience of using long-term domiciliary NIV.<\/jats:p>\n                  <jats:p>Methods: Semi-structured, qualitative interviews were conducted with adults with CF using long-term domiciliary NIV for respiratory failure. The data collected were subject to thematic analysis.<\/jats:p>\n                  <jats:p>\n                    Results: Nine adults (6 female), 5 of whom were awaiting lung transplantation, with a mean age of 39\u00a0years and mean FEV\n                    <jats:sub>1<\/jats:sub>\n                    per cent predicted of 28%, were recruited. Data analysis revealed 2 themes: gratitude, and determination despite challenges. Patients identified some troubling side effects from NIV but were grateful for its symptomatic relief and were determined to continue using it to improve their quality of life.\n                  <\/jats:p>\n                  <jats:p>Conclusions: Participants reported experiences of NIV to be generally positive in terms of symptom relief and quality of life. These findings provide an initial insight into patients\u2019 experience of NIV and have the potential to help guide and improve care.<\/jats:p>","DOI":"10.1177\/14799731241249476","type":"journal-article","created":{"date-parts":[[2025,1,29]],"date-time":"2025-01-29T11:27:31Z","timestamp":1738150051000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["The experience of adults with cystic fibrosis using long-term domiciliary non-invasive ventilation"],"prefix":"10.1177","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2813-7557","authenticated-orcid":false,"given":"Jocelyn","family":"Choyce","sequence":"first","affiliation":[{"name":"West Midlands Adult Cystic Fibrosis Centre, Birmingham Heartlands Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8508-1967","authenticated-orcid":false,"given":"Alistair","family":"Hewison","sequence":"additional","affiliation":[{"name":"Institute of Clinical Sciences, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amelia","family":"Swift","sequence":"additional","affiliation":[{"name":"Institute of Clinical Sciences, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanna L","family":"Whitehouse","sequence":"additional","affiliation":[{"name":"West Midlands Adult Cystic Fibrosis Centre, Birmingham Heartlands Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,1,29]]},"reference":[{"key":"bibr1-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.22546"},{"key":"bibr2-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD002769.pub5"},{"key":"bibr3-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1136\/thx.2007.082602"},{"key":"bibr4-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.93.04050524"},{"key":"bibr5-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1097\/MCP.0000000000000105"},{"key":"bibr6-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1159\/000110893"},{"key":"bibr7-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2011.11.006"},{"key":"bibr8-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1016\/S1569-1993(11)60007-6"},{"key":"bibr9-14799731241249476","unstructured":"Cystic Fibrosis Trust. UK cystic fibrosis registry 2021 annual data report, https:\/\/www.cysticfibrosis.org.uk\/sites\/default\/files\/2022-12\/CF-Trust-Annual-Data-Report-2021-WEB.pdf 2021, accessed 03 February 2023)."},{"key":"bibr10-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(19)32597-8"},{"key":"bibr11-14799731241249476","volume-title":"An investigation of the experience of adults with Cystic Fibrosis using long-term domiciliary non-invasive ventilation","author":"Choyce J","year":"2019"},{"key":"bibr12-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1136\/qhc.11.2.148"},{"key":"bibr13-14799731241249476","volume-title":"Research Methods in Health. Investigating health and health services","author":"Bowling A","year":"2014","edition":"4"},{"key":"bibr14-14799731241249476","volume-title":"Successful qualitative research: a practical guide for beginners","author":"Braun V","year":"2013"},{"key":"bibr15-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"bibr16-14799731241249476","volume-title":"An expanded sourcebook-qualitative data analysis","author":"Miles MB","year":"1994","edition":"2"},{"key":"bibr17-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1378\/chest.102.3.846"},{"key":"bibr18-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1016\/j.jphys.2015.05.019"},{"key":"bibr19-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1016\/S0954-6111(98)90302-X"},{"key":"bibr20-14799731241249476","first-page":"527","volume":"6","author":"Efrati O","year":"2004","journal-title":"Isr Med Assoc J"},{"key":"bibr21-14799731241249476","first-page":"1126","volume":"63","author":"Munckton K","year":"2007","journal-title":"Journal of the Association of Anaesthetists of Great Britain and Ireland"},{"key":"bibr22-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1080\/09593985.2017.1400137"},{"key":"bibr23-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1177\/0269216314558327"},{"key":"bibr24-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"bibr25-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1016\/0147-1767(85)90062-8"},{"key":"bibr26-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1002\/nur.4770180211"},{"key":"bibr27-14799731241249476","unstructured":"James Lind Alliance. Top ten cystic fibrosis research priorities 2017. https:\/\/www.jla.nihr.ac.uk\/priority-setting-partnerships\/cystic-fibrosis\/top-10-priorities.html (2017, accessed 20.03.18)."},{"key":"bibr28-14799731241249476","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.39188.741944.47"}],"container-title":["Chronic Respiratory Disease"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/14799731241249476","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/14799731241249476","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/14799731241249476","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T16:48:10Z","timestamp":1777394890000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/14799731241249476"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1,29]]},"references-count":28,"alternative-id":["10.1177\/14799731241249476"],"URL":"https:\/\/doi.org\/10.1177\/14799731241249476","relation":{},"ISSN":["1479-9731","1479-9731"],"issn-type":[{"value":"1479-9731","type":"print"},{"value":"1479-9731","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,29]]},"article-number":"14799731241249476"}}