{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,12]],"date-time":"2026-09-12T05:58:29Z","timestamp":1789192709949,"version":"build-2803163510"},"reference-count":37,"publisher":"BMJ","issue":"12","license":[{"start":{"date-parts":[[2020,12,3]],"date-time":"2020-12-03T00:00:00Z","timestamp":1606953600000},"content-version":"unspecified","delay-in-days":2,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"MNDA and Marie Curie Research Grant","award":["MCRGS-07-16-21"],"award-info":[{"award-number":["MCRGS-07-16-21"]}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2020,8,21]]},"published-print":{"date-parts":[[2020,12]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Motor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Qualitative: focus groups, interviews and carer workshops.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Three UK MND specialist centres serving a wide range of areas.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Stage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses\/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4\u2009months to 12.5 years.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Carers described challenges of a disease that was terminal from the outset, of \u2018chasing\u2019 progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both \u2018enabling\u2019 domains which identify carers\u2019 needs as co-workers as well as carers\u2019 \u2018direct\u2019 needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Carers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2020-039031","type":"journal-article","created":{"date-parts":[[2020,12,3]],"date-time":"2020-12-03T15:59:51Z","timestamp":1607011191000},"page":"e039031","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":16,"title":["Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study"],"prefix":"10.1136","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9547-7247","authenticated-orcid":false,"given":"Gail","family":"Ewing","sequence":"first","affiliation":[{"name":"Centre for Family Research, University of Cambridge, Cambridge, Cambridgeshire, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Croke","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Rowland","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gunn","family":"Grande","sequence":"additional","affiliation":[{"name":"School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2020,12,3]]},"reference":[{"key":"2025120519595221000_10.12.e039031.1","unstructured":"MNDA . Key facts and information about MND. Available: https:\/\/www.mndassociation.org\/about-us\/who-we-are\/mnd-key-facts\/ [Accessed 17 Feb 2020]."},{"key":"2025120519595221000_10.12.e039031.2","unstructured":"MND Australia . Facts and figures. Available: https:\/\/www.mndaust.asn.au\/Get-informed\/What-is-MND\/Facts-and-figures.aspx [Accessed 17 Feb 2020]."},{"key":"2025120519595221000_10.12.e039031.3","unstructured":"ALS Association . Who gets ALS? Available: http:\/\/web.alsa.org\/site\/PageServer?pagename=ALSA_WhoGets [Accessed 17 Feb 2020]."},{"key":"2025120519595221000_10.12.e039031.4","doi-asserted-by":"publisher","DOI":"10.1177\/0269216312455729"},{"key":"2025120519595221000_10.12.e039031.5","doi-asserted-by":"crossref","first-page":"231","DOI":"10.1177\/0269216317709965","article-title":"Caregiver burden in amyotrophic lateral sclerosis: a systematic review","volume":"32","author":"de Wit","year":"2018","journal-title":"Palliat Med"},{"key":"2025120519595221000_10.12.e039031.6","doi-asserted-by":"crossref","DOI":"10.1186\/s12904-016-0153-0","article-title":"Caregiving in ALS - a mixed methods approach to the study of Burden","volume":"15","author":"Galvin","year":"2016","journal-title":"BMC Palliat Care"},{"key":"2025120519595221000_10.12.e039031.7","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291706007124"},{"key":"2025120519595221000_10.12.e039031.8","doi-asserted-by":"publisher","DOI":"10.1080\/13548506.2010.507773"},{"key":"2025120519595221000_10.12.e039031.9","doi-asserted-by":"publisher","DOI":"10.3109\/17482968.2011.649759"},{"key":"2025120519595221000_10.12.e039031.10","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311410900"},{"key":"2025120519595221000_10.12.e039031.11","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp-2015-311651"},{"key":"2025120519595221000_10.12.e039031.12","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-148-2-200801150-00010"},{"key":"2025120519595221000_10.12.e039031.13","article-title":"Interventions for supporting informal caregivers of patients in the terminal phase of a disease","volume":"15","author":"Candy","year":"2 011","journal-title":"Cochrane Database Syst Rev"},{"key":"2025120519595221000_10.12.e039031.14","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD007760.pub2"},{"key":"2025120519595221000_10.12.e039031.15","doi-asserted-by":"crossref","first-page":"228","DOI":"10.1017\/S1478951517000700","article-title":"Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: a scoping review and synthesis","volume":"16","author":"Harris","year":"2018","journal-title":"Palliat Support Care"},{"key":"2025120519595221000_10.12.e039031.16","doi-asserted-by":"publisher","DOI":"10.1186\/1472-684X-13-12"},{"key":"2025120519595221000_10.12.e039031.17","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2014.0213"},{"key":"2025120519595221000_10.12.e039031.18","doi-asserted-by":"crossref","first-page":"114","DOI":"10.12968\/bjnn.2019.15.3.114","article-title":"The Carers' Alert Thermometer (CAT): supporting family carers of people living with motor neurone disease","volume":"15","author":"O'Brien","year":"2019","journal-title":"Br J Neurosci Nurs"},{"key":"2025120519595221000_10.12.e039031.19","doi-asserted-by":"publisher","DOI":"10.1177\/0269216312440607"},{"key":"2025120519595221000_10.12.e039031.20","doi-asserted-by":"crossref","first-page":"580","DOI":"10.12968\/bjcn.2015.20.12.580","article-title":"Developing a person-centred approach to carer assessment and support","volume":"20","author":"Ewing","year":"2015","journal-title":"Br J Community Nurs"},{"key":"2025120519595221000_10.12.e039031.21","doi-asserted-by":"publisher","DOI":"10.1177\/0269216315596662"},{"key":"2025120519595221000_10.12.e039031.22","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2012.09.008."},{"key":"2025120519595221000_10.12.e039031.23","doi-asserted-by":"publisher","DOI":"10.1177\/0269216314566061"},{"key":"2025120519595221000_10.12.e039031.24","doi-asserted-by":"publisher","DOI":"10.1177\/0269216315583436"},{"key":"2025120519595221000_10.12.e039031.25","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0123012"},{"key":"2025120519595221000_10.12.e039031.26","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2014-000829"},{"key":"2025120519595221000_10.12.e039031.27","doi-asserted-by":"crossref","unstructured":"Morgan DL . 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