{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T08:14:25Z","timestamp":1783325665587,"version":"3.54.6"},"reference-count":61,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100000406","name":"Motor Neurone Disease Association","doi-asserted-by":"publisher","award":["Wilson\/Oct23\/2307-794"],"award-info":[{"award-number":["Wilson\/Oct23\/2307-794"]}],"id":[{"id":"10.13039\/501100000406","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat\ufffdCare"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>People living with motor neurone disease (MND) increasingly receive complex, life-sustaining interventions at home, including ventilation, tube feeding, and cough assist support. These demands place substantial strain on family carers and often require input from paid homecare workers. Despite their essential role, little is known about how homecare workers contribute to complex MND care, how they integrate within multidisciplinary teams, or how families experience their involvement.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives:<\/jats:title>\n                    <jats:p>To examine people living with MND and family members\u2019 perspectives of homecare worker roles, responsibilities, relationships when complex interventions are required.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A qualitative secondary analysis of data from two prior studies exploring home ventilation and tracheostomy ventilation in MND.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>Seven relevant NVivo nodes and 33 sub-nodes from interviews with 68 participants were re-coded using a deductive framework. Fourteen new nodes and 11 sub-nodes were generated and organised into three themes: care commissioning and provision; relationships; and the home environment.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Participants described fragmented and inconsistent care commissioning, requiring families to advocate persistently for adequate support. Challenges included funding barriers, high staff turnover, and limited MND-specific knowledge, which undermined trust and compromised safe, effective care. Relationships with homecare workers ranged from highly valued, stable partnerships to strained interactions shaped by competence concerns, emotional labour, and mismatched expectations. The presence of homecare workers and medical equipment transformed the home into a quasi-clinical space, reducing privacy, disrupting routines, and requiring households to adapt around care provision. Yet strong relationships with homecare workers could enhance quality of life.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Homecare workers play a critical role in delivering complex home-based MND care, yet quality is inconsistent. Improving training, stabilising staffing, supporting care coordination, and preparing families for the relational and environmental impact of homecare are essential for fostering sustainable, trusted care relationships, and improving outcomes for people living with MND and their families.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524261452739","type":"journal-article","created":{"date-parts":[[2026,7,4]],"date-time":"2026-07-04T07:22:40Z","timestamp":1783149760000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Paid homecare worker support for people living with motor neurone disease: A secondary analysis of people living with motor neurone disease and family member perspectives"],"prefix":"10.1177","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0419-5901","authenticated-orcid":false,"given":"Eleanor","family":"Wilson","sequence":"first","affiliation":[{"name":"School of Health Sciences, University of Nottingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicola","family":"Turner","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Nottingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Geraldine","family":"Macdonald","sequence":"additional","affiliation":[{"name":"University of Bristol, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Faull","sequence":"additional","affiliation":[{"name":"Dorothy House Hospice Care, Winsley, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,7,4]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2013-000489"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.13945"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2020-044724"},{"key":"e_1_3_3_5_2","unstructured":"National Institute of Health and Care Excellence (NICE). Motor neurone disease: assessment and management https:\/\/www.nice.org.uk\/guidance\/ng42 (2016 accessed 29 April 2026)."},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216315575851"},{"key":"e_1_3_3_7_2","article-title":"Reflections of family caregivers and health professionals on the everyday challenges of caring for persons with amyotrophic lateral sclerosis and cognitive impairments: a qualitative study","volume":"16","author":"Olesen LK","year":"2022","unstructured":"Olesen LK, Cour Kl, With H, et al. Reflections of family caregivers and health professionals on the everyday challenges of caring for persons with amyotrophic lateral sclerosis and cognitive impairments: a qualitative study. Palliat Care Soc Pract 2022; 16: 26323524221077702.","journal-title":"Palliat Care Soc Pract"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2013.0211"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216312455729"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.12968\/bjnn.2005.1.5.20273"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2524.2001.00320.x"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0319628"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2012.01092.x"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1136\/spcare-2023-004737"},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1177\/1471301217699354"},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1177\/14713012211023676"},{"key":"e_1_3_3_17_2","volume-title":"The managed heart: the commercialization of human feeling","author":"Hochschild A.","year":"1983","unstructured":"Hochschild A. The managed heart: the commercialization of human feeling. University of California Press, 1983."},{"key":"e_1_3_3_18_2","doi-asserted-by":"publisher","DOI":"10.1177\/07334648241252010"},{"key":"e_1_3_3_19_2","article-title":"At home until the end? A qualitative study of experiences of in-home aged care programs in the context of caring for older adults with a life-limiting illness","volume":"20","author":"Bindley K","year":"2026","unstructured":"Bindley K, Ivynian S, Rawlings-Way O, et al. At home until the end? A qualitative study of experiences of in-home aged care programs in the context of caring for older adults with a life-limiting illness. Palliat Care Soc Pract 2026; 20: 26323524251408891.","journal-title":"Palliat Care Soc Pract"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.3390\/brainsci12010049"},{"key":"e_1_3_3_21_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.38740.614954.55"},{"key":"e_1_3_3_22_2","unstructured":"ADASS. Press release: adult social care reform announcement response. The Association of Directors of Adult Social Care Services Adult Social Care reform announcement response - ADASS (2024 accessed 27 May 2026)."},{"key":"e_1_3_3_23_2","unstructured":"Bottery S. Reform of adult social care: vanishing over the horizon. The King\u2019s Fund https:\/\/www.kingsfund.org.uk\/blog\/2023\/04\/reform-adult-social-care-vanishing-over-horizon#comments-top (2023 accessed 29 April 2026)."},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1136\/practneurol-2018-002109"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2017-210983.47"},{"key":"e_1_3_3_26_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2005.00530.x"},{"key":"e_1_3_3_27_2","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311398697"},{"key":"e_1_3_3_28_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2005.03434.x"},{"key":"e_1_3_3_29_2","doi-asserted-by":"publisher","DOI":"10.3390\/brainsci12091162"},{"key":"e_1_3_3_30_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-024-01443-1"},{"key":"e_1_3_3_31_2","doi-asserted-by":"publisher","DOI":"10.1177\/02692163251327866"},{"key":"e_1_3_3_32_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2024.117345"},{"key":"e_1_3_3_33_2","volume-title":"Breath by breath: decision-making in the final stages of motor neurone disease","author":"Wilson E.","year":"2024","unstructured":"Wilson E. Breath by breath: decision-making in the final stages of motor neurone disease. Scipod Global, 2024."},{"key":"e_1_3_3_34_2","unstructured":"Wilson E Palmer J C F. The evolving nature of end of life planning for MND when ventilation is required. Video Animation. YouTube: SciTube https:\/\/scitube.io\/dr-eleanor-wilson-the-evolving-nature-of-end-of-life-planning-for-motor-neurone-disease-patients-and-their-families-when-ventilation-is-required\/ (2025 accessed 17 March 2026)."},{"key":"e_1_3_3_35_2","doi-asserted-by":"publisher","DOI":"10.3390\/brainsci14080821"},{"key":"e_1_3_3_36_2","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2025.2495014"},{"key":"e_1_3_3_37_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2023-071624"},{"key":"e_1_3_3_38_2","doi-asserted-by":"crossref","unstructured":"Wilson E Turner N Palmer J et al. Living with tracheostomy ventilation for motor neurone disease: a qualitative study of family member perspectives. Disabil Rehabil 2025: 1\u201313. https:\/\/doi.org\/10.1080\/09638288.2025.2574536","DOI":"10.1080\/09638288.2025.2574536"},{"key":"e_1_3_3_39_2","doi-asserted-by":"publisher","DOI":"10.1177\/1744987110381553"},{"key":"e_1_3_3_40_2","doi-asserted-by":"publisher","DOI":"10.4135\/9781446212165.n30"},{"key":"e_1_3_3_41_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2010.06.043"},{"key":"e_1_3_3_42_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2012.00773.x"},{"key":"e_1_3_3_43_2","unstructured":"Motor Neurone Disease Association. NHS Continuing Healthcare (10D). Motor Neurone Disease Association https:\/\/www.mndassociation.org\/sites\/default\/files\/2023-02\/10D%20NHS%20Continuing%20Healthcare.pdf (2022 accessed 28 April 2026)."},{"key":"e_1_3_3_44_2","unstructured":"Motor Neurone Disease Association. Personal health budgets \u2013 10F. MNDA https:\/\/www.mndassociation.org\/sites\/default\/files\/2022-11\/10F%20Personal%20health%20budgets.pdf (2022 accessed 28 April 2026)."},{"key":"e_1_3_3_45_2","first-page":"392","volume-title":"The Sage handbook of qualitative research quality","author":"Haaker M.","year":"2024","unstructured":"Haaker M. Research quality in through qualitative secondary analysis. In: Uwe F (ed.) The Sage handbook of qualitative research quality. Sage, 2024, pp. 392\u2013407."},{"key":"e_1_3_3_46_2","doi-asserted-by":"publisher","DOI":"10.1177\/1473325017700701"},{"key":"e_1_3_3_47_2","volume-title":"Qualitative data analysis with NVivo","author":"Jackson K","year":"2019","unstructured":"Jackson K, Bazeley P. Qualitative data analysis with NVivo. 3rd ed. Sage, 2019.","edition":"3"},{"key":"e_1_3_3_48_2","unstructured":"Lumivero. NVivo qualitative data analysis software. (Version14) ed. www.lumivero.com (2023)."},{"key":"e_1_3_3_49_2","doi-asserted-by":"publisher","DOI":"10.4135\/9781036233808"},{"key":"e_1_3_3_50_2","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare13161994"},{"key":"e_1_3_3_51_2","doi-asserted-by":"publisher","DOI":"10.1080\/01621424.2019.1604462"},{"key":"e_1_3_3_52_2","doi-asserted-by":"publisher","DOI":"10.3928\/19404921-20210526-01"},{"key":"e_1_3_3_53_2","doi-asserted-by":"publisher","DOI":"10.1080\/07481187.2023.2191351"},{"key":"e_1_3_3_54_2","doi-asserted-by":"publisher","DOI":"10.1111\/opn.12194"},{"key":"e_1_3_3_55_2","doi-asserted-by":"publisher","DOI":"10.1086\/227049"},{"key":"e_1_3_3_56_2","doi-asserted-by":"publisher","DOI":"10.1177\/14713012211069732"},{"key":"e_1_3_3_57_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2006.01722.x"},{"key":"e_1_3_3_58_2","doi-asserted-by":"publisher","DOI":"10.1007\/BF00989485"},{"key":"e_1_3_3_59_2","doi-asserted-by":"publisher","DOI":"10.1177\/02692163211030113"},{"key":"e_1_3_3_60_2","first-page":"833","article-title":"Recommendations for secondary analysis of qualitative data","volume":"25","author":"Chatfield SL.","year":"2020","unstructured":"Chatfield SL. Recommendations for secondary analysis of qualitative data. Qual Rep 2020; 25: 833\u2013842.","journal-title":"Qual Rep"},{"key":"e_1_3_3_61_2","doi-asserted-by":"publisher","DOI":"10.1177\/02692163231175696"},{"key":"e_1_3_3_62_2","doi-asserted-by":"publisher","DOI":"10.1177\/16094069241251537"}],"container-title":["Palliative Care and Social Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/26323524261452739","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/26323524261452739","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/26323524261452739","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T07:16:22Z","timestamp":1783322182000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/26323524261452739"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7]]},"references-count":61,"alternative-id":["10.1177\/26323524261452739"],"URL":"https:\/\/doi.org\/10.1177\/26323524261452739","relation":{},"ISSN":["2632-3524","2632-3524"],"issn-type":[{"value":"2632-3524","type":"print"},{"value":"2632-3524","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7]]},"article-number":"26323524261452739"}}