{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,4]],"date-time":"2026-07-04T19:03:29Z","timestamp":1783191809239,"version":"3.54.6"},"reference-count":28,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2011,3,7]],"date-time":"2011-03-07T00:00:00Z","timestamp":1299456000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2012,3]]},"abstract":"<jats:p>Many patients with the terminal condition motor neurone disease\/amyotrophic lateral sclerosis (MND\/ALS) do not access social service homecare, which may have implications for the location of end-of-life care. We aimed to identify factors related to uptake of such care in MND\/ALS. A case note review of patients at a UK MND\/ALS clinic ( N = 97) provided data concerning disease onset and severity, demographic variables and care received. Narrative interviews with people with MND\/ALS ( N\u2009=\u200924) and family carers ( N\u2009=\u200918) explored their perspectives on social services homecare.<\/jats:p>\n                  <jats:p>Quantitative analyses highlighted the role of increasing disease severity and age for social services homecare uptake. However, qualitative findings revealed a number of barriers delaying the uptake of such care. \u2018Internal\u2019 issues focused on retaining control and normality within the home. \u2018External\u2019 issues arose from limited understanding of the disease amongst service providers and lack of awareness of service entitlement amongst patients and carers. Multiple factors are implicated in the uptake of social services homecare. Uncertainties surrounding service entitlement must be addressed, including the simplification of bureaucratic procedures and clarification of the roles of health and social care professionals. Service providers need a greater awareness of the nature of the disease and their role in its management.<\/jats:p>","DOI":"10.1177\/0269216311398697","type":"journal-article","created":{"date-parts":[[2011,3,8]],"date-time":"2011-03-08T01:54:35Z","timestamp":1299549275000},"page":"123-131","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":36,"title":["Social services homecare for people with motor neurone disease\/amyotrophic lateral sclerosis: Why are such services used or refused?"],"prefix":"10.1177","volume":"26","author":[{"given":"Mary R","family":"O\u2019Brien","sequence":"first","affiliation":[{"name":"Evidence-based Practice Research Centre, Faculty of Health, Edge Hill University, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bridget","family":"Whitehead","sequence":"additional","affiliation":[{"name":"Evidence-based Practice Research Centre, Faculty of Health, Edge Hill University, UK; MND Care and Research Centre, Royal Preston Hospital, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philip N","family":"Murphy","sequence":"additional","affiliation":[{"name":"Evidence-based Practice Research Centre, Faculty of Health, Edge Hill University, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J Douglas","family":"Mitchell","sequence":"additional","affiliation":[{"name":"MND Care and Research Centre, Royal Preston Hospital, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara A","family":"Jack","sequence":"additional","affiliation":[{"name":"Evidence-based Practice Research Centre, Faculty of Health, Edge Hill University, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2011,3,7]]},"reference":[{"key":"bibr1-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.1999.00908.x"},{"key":"bibr2-0269216311398697","volume-title":"The year before death","author":"Seale C","year":"1994"},{"key":"bibr3-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2000.3.287"},{"key":"bibr4-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1177\/0269216308096424"},{"key":"bibr5-0269216311398697","volume-title":"National service framework for long term conditions","author":"DOH","year":"2005"},{"key":"bibr6-0269216311398697","volume-title":"End-of-life care strategy \u2013 promoting high quality care for all adults at the end-of-life","author":"DOH","year":"2008"},{"key":"bibr7-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1016\/S0749-3797(18)31422-3"},{"key":"bibr8-0269216311398697","doi-asserted-by":"crossref","first-page":"799","DOI":"10.1046\/j.1365-2648.2000.t01-1-01543.x","volume":"32","author":"Addington-Hall J","year":"2000","journal-title":"J Adv Nurs"},{"key":"bibr9-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(07)60944-1"},{"key":"bibr10-0269216311398697","first-page":"147","volume":"9","author":"O\u2019Brien M","year":"2008","journal-title":"Amyotroph Lateral Scler"},{"key":"bibr11-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1080\/14660820600601028"},{"key":"bibr12-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2524.2001.00320.x"},{"key":"bibr13-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-510X(97)00251-7"},{"key":"bibr14-0269216311398697","doi-asserted-by":"publisher","DOI":"10.12968\/bjnn.2005.1.5.20273"},{"key":"bibr15-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2005.00530.x"},{"key":"bibr16-0269216311398697","volume-title":"Dying for change","author":"Leadbeater C","year":"2010"},{"key":"bibr17-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2005.8.69"},{"key":"bibr18-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1177\/026921639601000207"},{"key":"bibr19-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1177\/026921639400800302"},{"key":"bibr20-0269216311398697","unstructured":"DOH. \u2018Prioritising need in the context of Putting People First: a whole system approach to eligibility for social care\u2009-\u2009guidance on eligibility criteria for adult social care\u2019, http:\/\/www.dh.gov.uk\/en\/Publicationsandstatistics\/Publications\/PublicationsPolicyAndGuidance\/DH_113154 (2010, accessed 21 December 2010)"},{"key":"bibr21-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.55.4.526"},{"key":"bibr22-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-510X(99)00210-5"},{"key":"bibr23-0269216311398697","volume-title":"Using multivariate statistics","author":"Tabachnick BG","year":"2001"},{"key":"bibr24-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1177\/0269216308089842"},{"key":"bibr25-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1002\/nur.4770180211"},{"key":"bibr26-0269216311398697","volume-title":"Essentials of nursing research: methods, appraisal & utilization","author":"Polit DF","year":"2006","edition":"6"},{"key":"bibr27-0269216311398697","volume-title":"Qualitative data analysis: an expanded sourcebook","author":"Miles MB","year":"1994","edition":"2"},{"key":"bibr28-0269216311398697","doi-asserted-by":"publisher","DOI":"10.1080\/17482960601164532"}],"container-title":["Palliative Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0269216311398697","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/0269216311398697","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0269216311398697","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T18:18:32Z","timestamp":1777659512000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/0269216311398697"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2011,3,7]]},"references-count":28,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2012,3]]}},"alternative-id":["10.1177\/0269216311398697"],"URL":"https:\/\/doi.org\/10.1177\/0269216311398697","relation":{},"ISSN":["0269-2163","1477-030X"],"issn-type":[{"value":"0269-2163","type":"print"},{"value":"1477-030X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2011,3,7]]}}}