{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T02:22:03Z","timestamp":1785464523720,"version":"3.56.0"},"reference-count":26,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2023,7,14]],"date-time":"2023-07-14T00:00:00Z","timestamp":1689292800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Medical Journal of Australia"],"published-print":{"date-parts":[[2023,9,18]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objectives<\/jats:title><jats:p>To explore the experiences of Australian and New Zealand clinicians with respect to care pathways, their awareness and use of non\u2010invasive ventilation guidelines, and their perspectives on delivering quality non\u2010invasive ventilation services to people with neuromuscular disorders.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design, setting, participants<\/jats:title><jats:p>Qualitative study; semi\u2010structured focus groups and individual interviews with Australian and New Zealand clinicians who provide non\u2010invasive ventilation services to people with neuromuscular disorders, recruited from participants at a 2017 sleep medicine conference. Interviews were conducted during 1 October 2017 \u2013 31 May 2018.<\/jats:p><\/jats:sec><jats:sec><jats:title>Main outcome measures<\/jats:title><jats:p>Major themes identified by an iterative, semantic, and inductive analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 28 participants attended the four focus group sessions and five individual interviews; fourteen each from New Zealand and Australia, seventeen women and eleven men, eighteen physicians and ten other clinicians. Two major themes were identified: decision making for current practice, and resource constraints. Participants noted variable use of clinical guidelines and limited training to meet the needs of people with neuromuscular disorders who require non\u2010invasive ventilation. They described a lack of dedicated funding, unstructured care pathways, equipment supply levels that do not meet need, low staff\u2010to\u2010patient ratios and staff shortages, and the inability to deliver quality multidisciplinary care. The need for clinical guidelines and service specifications was highlighted as requisite for reducing variation in clinical care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Systemic factors influence the needs\u2010based provision of non\u2010invasive ventilation for people with neuromuscular disorders. Development of clinical guidelines for Australia and New Zealand, dedicated funding for respiratory services for people with neuromuscular disorders, and specialist clinician training are important for equitable and high quality non\u2010invasive ventilation care.<\/jats:p><\/jats:sec>","DOI":"10.5694\/mja2.52036","type":"journal-article","created":{"date-parts":[[2023,7,14]],"date-time":"2023-07-14T11:03:23Z","timestamp":1689332603000},"page":"270-274","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Non\u2010invasive ventilation for people with neuromuscular disorders in Australia and New Zealand: a qualitative study of clinician perspectives"],"prefix":"10.5694","volume":"219","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1602-4421","authenticated-orcid":false,"given":"Meredith A","family":"Perry","sequence":"first","affiliation":[{"name":"Centre for Health, Activity and Rehabilitation Research (CHARR) University of Otago  Dunedin New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernadette","family":"Jones","sequence":"additional","affiliation":[{"name":"University of Otago  Wellington New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hemakumar","family":"Devan","sequence":"additional","affiliation":[{"name":"Centre for Health, Activity and Rehabilitation Research (CHARR) University of Otago  Dunedin New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alister","family":"Neill","sequence":"additional","affiliation":[{"name":"University of Otago  Wellington New Zealand"},{"name":"Capital and Coast District Health Board  Newtown New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amanda","family":"Piper","sequence":"additional","affiliation":[{"name":"The University of Sydney Central Clinical School  Sydney NSW"},{"name":"Royal Prince Alfred Hospital  Sydney NSW"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tristram","family":"Ingham","sequence":"additional","affiliation":[{"name":"University of Otago  Wellington New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,7,14]]},"reference":[{"key":"e_1_2_8_1_1","doi-asserted-by":"publisher","DOI":"10.1159\/000494115"},{"key":"e_1_2_8_2_1","unstructured":"Muscular Dystrophy Foundation Australia.What is MD?2020.https:\/\/mdaustralia.org.au\/what\u2010is\u2010md(viewed Dec 2022)."},{"key":"e_1_2_8_3_1","first-page":"892","article-title":"Early initiation of night\u2010time NIV in an outpatient setting: A randomized non\u2010inferiority study in ALS patients","volume":"53","author":"Berella E","year":"2017","journal-title":"Eur J Phy Rehabil Med"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40675-017-0097-9"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2016.1165256"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201606-454FR"},{"key":"e_1_2_8_7_1","article-title":"Respiratory involvement in patients with neuromuscular diseases: a narrative review","author":"Voulgaris A","year":"2019","journal-title":"Pulm Med"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.00206311"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/imj.15960"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/PHM.0b013e31826edcf1"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1183\/16000617.0002-2016"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1155\/2016\/6547180"},{"key":"e_1_2_8_13_1","unstructured":"Agency for Clinical Innovation (New South Wales).Non\u2010invasive ventilation for patients with acute respiratory failure.Clinical practice guide. Feb2023.https:\/\/aci.health.nsw.gov.au\/networks\/icnsw\/clinicians\/non\u2010invasive\u2010ventilation(viewed July 2023)."},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1445-5994.2010.02171.x"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph20064758"},{"key":"e_1_2_8_16_1","unstructured":"All Party Parliament Group for Muscular Dystrophy (UK).Access to specialist neuromuscular care: the Walton report. 5 Jan2012.https:\/\/issuu.com\/musculardystrophycampaign\/docs\/walton_report(viewed Mar 2018)."},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/1098214005283748"},{"key":"e_1_2_8_18_1","unstructured":"Ministry of Health (New Zealand).Equity of health care for M\u0101ori: a framework. Updated 14 Nov2021.https:\/\/www.health.govt.nz\/publication\/equity\u2010health\u2010care\u2010maori\u2010framework(viewed May 2023)."},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_8_20_1","volume-title":"Thematic analysis: a practical guide","author":"Braun V","year":"2021"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2012.01.007"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.05.00066704"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.12968\/bjon.2014.23.13.724"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.25725"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.4018\/978-1-5225-7402-6.ch003"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6947-8-38"}],"container-title":["Medical Journal of Australia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.5694\/mja2.52036","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,17]],"date-time":"2023-09-17T17:06:22Z","timestamp":1694970382000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.5694\/mja2.52036"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7,14]]},"references-count":26,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2023,9,18]]}},"alternative-id":["10.5694\/mja2.52036"],"URL":"https:\/\/doi.org\/10.5694\/mja2.52036","archive":["Portico"],"relation":{},"ISSN":["0025-729X","1326-5377"],"issn-type":[{"value":"0025-729X","type":"print"},{"value":"1326-5377","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,7,14]]},"assertion":[{"value":"2022-12-30","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-05-29","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-07-14","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}