{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T21:21:01Z","timestamp":1792012861478,"version":"4.4.0"},"reference-count":50,"publisher":"Wiley","issue":"23-24","license":[{"start":{"date-parts":[[2017,8,31]],"date-time":"2017-08-31T00:00:00Z","timestamp":1504137600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Health Fellowship Foundation"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Clinical Nursing"],"published-print":{"date-parts":[[2017,12]]},"abstract":"<jats:sec><jats:title>Aims and objectives<\/jats:title><jats:p>To identify the supportive care needs of amyotrophic lateral sclerosis\/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature.<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>Little is known about the supportive care needs of amyotrophic lateral sclerosis\/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Scoping review.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000\u2013July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer\u2010reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis\/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis\/motor neuron disease or their caregivers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Thirty\u2010seven articles were included. Our review shows that amyotrophic lateral sclerosis\/motor neuron disease patients and their caregivers\u2019 supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (<jats:italic>n<\/jats:italic>\u00a0=\u00a024), followed by Informational needs (<jats:italic>n<\/jats:italic>\u00a0=\u00a019), Social needs (<jats:italic>n<\/jats:italic>\u00a0=\u00a018), Psychological needs (<jats:italic>n<\/jats:italic>\u00a0=\u00a016), Physical needs (<jats:italic>n<\/jats:italic>\u00a0=\u00a015), Emotional needs (<jats:italic>n<\/jats:italic>\u00a0=\u00a013) and Spiritual needs (<jats:italic>n<\/jats:italic>\u00a0=\u00a08).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>From the perspectives of amyotrophic lateral sclerosis\/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support.<\/jats:p><\/jats:sec><jats:sec><jats:title>Relevance to clinical practice<\/jats:title><jats:p>The Supportive Care Needs Framework has potential utility in the development of patient\u2010centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals provide multidisciplinary care to amyotrophic lateral sclerosis\/motor neuron disease patients and individualised care.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jocn.13945","type":"journal-article","created":{"date-parts":[[2017,7,6]],"date-time":"2017-07-06T03:46:48Z","timestamp":1499312808000},"page":"4129-4152","source":"Crossref","is-referenced-by-count":64,"title":["Supportive care needs of patients with amyotrophic lateral sclerosis\/motor neuron disease and their caregivers: A\u00a0scoping review"],"prefix":"10.1111","volume":"26","author":[{"given":"Juyeon","family":"Oh","sequence":"first","affiliation":[{"name":"Division of Nursing Hanyang University Seoul Korea"},{"name":"Cell therapy Center for Intractable Disorders Hanyang University Hospital Seoul Korea"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jung A","family":"Kim","sequence":"additional","affiliation":[{"name":"Division of Nursing Hanyang University Seoul Korea"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,8,31]]},"reference":[{"key":"e_1_2_10_2_1","first-page":"1","article-title":"Home care needs of patients with amyotrophic lateral sclerosis and care burden of caregivers","volume":"9","author":"Alankaya N.","year":"2015","journal-title":"Health Science Journal"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2008.11.013"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-1331.2011.03501.x"},{"key":"e_1_2_10_5_1","first-page":"150","article-title":"Healthcare needs of patients with amyotrophic lateral sclerosis (ALS) in Singapore: A patient\u2010centred qualitative study from multiple perspectives","volume":"31","author":"Ang K.","year":"2015","journal-title":"Journal of Palliative Medicine"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216312455729"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311416036"},{"key":"e_1_2_10_8_1","first-page":"17","article-title":"The challenges and unmet needs of people with neurodegenerative conditions and their carers","volume":"11","author":"Aoun S.","year":"2006","journal-title":"Journal of Community Nursing"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/1364557032000119616"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1089\/109662101753381647"},{"issue":"236","key":"e_1_2_10_11_1","first-page":"235","article-title":"Interviews with patients, family, and caregivers in amyotrophic lateral sclerosis: Comparing needs","volume":"17","author":"Bolmsj\u00f6 I.","year":"2001","journal-title":"Journal of Palliative Care"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1191\/0969733003ne593oa"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1191\/1463423603pc151oa"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1097\/TLD.0b013e31825616ef"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-1331.2007.02000.x"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/ijop.12085"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2014.920031"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.5737\/1181912x181614"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2011.607500"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.59.3.428"},{"key":"e_1_2_10_21_1","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1177\/082585970502100208","article-title":"Palliative care service needs of motor neuron disease patients","volume":"21","author":"Goodyear\u2010Smith F. 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