{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,18]],"date-time":"2026-04-18T02:20:45Z","timestamp":1776478845662,"version":"3.51.2"},"reference-count":37,"publisher":"Wiley","license":[{"start":{"date-parts":[[2021,3,15]],"date-time":"2021-03-15T00:00:00Z","timestamp":1615766400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100004359","name":"Vetenskapsr\u00e5det","doi-asserted-by":"publisher","award":["CLaSP\/JPND HC-559-002"],"award-info":[{"award-number":["CLaSP\/JPND HC-559-002"]}],"id":[{"id":"10.13039\/501100004359","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100004359","name":"Vetenskapsr\u00e5det","doi-asserted-by":"publisher","award":["ES\/L009250\/1"],"award-info":[{"award-number":["ES\/L009250\/1"]}],"id":[{"id":"10.13039\/501100004359","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000269","name":"Economic and Social Research Council","doi-asserted-by":"publisher","award":["CLaSP\/JPND HC-559-002"],"award-info":[{"award-number":["CLaSP\/JPND HC-559-002"]}],"id":[{"id":"10.13039\/501100000269","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000269","name":"Economic and Social Research Council","doi-asserted-by":"publisher","award":["ES\/L009250\/1"],"award-info":[{"award-number":["ES\/L009250\/1"]}],"id":[{"id":"10.13039\/501100000269","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003252","name":"Lunds Universitet","doi-asserted-by":"publisher","award":["CLaSP\/JPND HC-559-002"],"award-info":[{"award-number":["CLaSP\/JPND HC-559-002"]}],"id":[{"id":"10.13039\/501100003252","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003252","name":"Lunds Universitet","doi-asserted-by":"publisher","award":["ES\/L009250\/1"],"award-info":[{"award-number":["ES\/L009250\/1"]}],"id":[{"id":"10.13039\/501100003252","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"publisher","award":["CLaSP\/JPND HC-559-002"],"award-info":[{"award-number":["CLaSP\/JPND HC-559-002"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"publisher","award":["ES\/L009250\/1"],"award-info":[{"award-number":["ES\/L009250\/1"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Parkinson's Disease"],"published-print":{"date-parts":[[2021,3,15]]},"abstract":"<jats:p>In the late stage of Parkinson\u2019s disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients\u2019 and their informal caregivers\u2019 satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients (n\u2009=\u200911) and informal caregivers (n\u2009=\u20099) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: \u201cWe are trying to get by both with and without the formal care\u201d and five subcategories: \u201cAvailability of health care is important for managing symptoms and everyday life\u201d; \u201cDependence on others and scheduled days form everyday life\u201d; \u201cThere is a wish to get adequate help when it is needed\u201d; \u201cMixed feelings on future housing and respite care\u201d; and \u201cFamily responsibility and loyalty for a functioning everyday life\u201d. Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.<\/jats:p>","DOI":"10.1155\/2021\/9475026","type":"journal-article","created":{"date-parts":[[2021,3,16]],"date-time":"2021-03-16T19:52:56Z","timestamp":1615924376000},"page":"1-11","source":"Crossref","is-referenced-by-count":15,"title":["Perspectives on Care for Late-Stage Parkinson\u2019s Disease"],"prefix":"10.1155","volume":"2021","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3861-8012","authenticated-orcid":true,"given":"Kristina","family":"Rosqvist","sequence":"first","affiliation":[{"name":"Lund University, Faculty of Medicine, Department of Clinical Sciences Lund, Neurology, Lund, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7109-7573","authenticated-orcid":true,"given":"Marianne","family":"Kylberg","sequence":"additional","affiliation":[{"name":"Lund University, Faculty of Medicine, Department of Health Sciences, Lund, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8324-9300","authenticated-orcid":true,"given":"Charlotte","family":"L\u00f6fqvist","sequence":"additional","affiliation":[{"name":"Lund University, Faculty of Medicine, Department of Health Sciences, Lund, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9872-6680","authenticated-orcid":true,"given":"Anette","family":"Schrag","sequence":"additional","affiliation":[{"name":"University College London, Queen Square Institute of Neurology, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0756-7478","authenticated-orcid":true,"given":"Per","family":"Odin","sequence":"additional","affiliation":[{"name":"Lund University, Faculty of Medicine, Department of Clinical Sciences Lund, Neurology, Lund, Sweden"},{"name":"Department of Neurology, Sk\u00e5ne University Hospital, Lund, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6670-7952","authenticated-orcid":true,"given":"Susanne","family":"Iwarsson","sequence":"additional","affiliation":[{"name":"Lund University, Faculty of Medicine, Department of Health Sciences, Lund, Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","reference":[{"key":"1","doi-asserted-by":"publisher","DOI":"10.1056\/nejm196902132800701"},{"key":"2","doi-asserted-by":"publisher","DOI":"10.1002\/mds.26120"},{"key":"3","doi-asserted-by":"publisher","DOI":"10.1016\/bs.irn.2017.01.006"},{"key":"4","doi-asserted-by":"publisher","DOI":"10.1212\/wnl.0000000000002509"},{"key":"5","doi-asserted-by":"publisher","DOI":"10.1212\/wnl.17.5.427"},{"key":"6","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2012.126"},{"key":"7","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-010-5566-8"},{"key":"8","doi-asserted-by":"publisher","DOI":"10.3233\/jpd-171181"},{"key":"9","doi-asserted-by":"publisher","DOI":"10.3233\/jpd-181380"},{"key":"10","doi-asserted-by":"publisher","DOI":"10.1177\/0891988717720302"},{"key":"11","doi-asserted-by":"publisher","DOI":"10.1111\/ene.13738"},{"key":"12","doi-asserted-by":"publisher","DOI":"10.1177\/0269216310385604"},{"key":"13","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2016.0325"},{"key":"14","doi-asserted-by":"publisher","DOI":"10.1002\/mds.23160"},{"key":"15","doi-asserted-by":"publisher","DOI":"10.1155\/2019\/2593547"},{"key":"16","doi-asserted-by":"publisher","DOI":"10.1002\/mds.23878"},{"key":"17","doi-asserted-by":"publisher","DOI":"10.1186\/s12883-018-1184-3"},{"key":"18","first-page":"152","article-title":"Projection technique for evaluating surgery in Parkinson\u2019s disease","volume-title":"Third Symposium on Parkinson\u2019s Disease","author":"R. Schwab","year":"1969"},{"key":"19","volume-title":"Qualitative Research and Evaluation Methods","author":"M. Q. Patton","year":"2002","edition":"3rd"},{"key":"20","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305276687"},{"key":"21","doi-asserted-by":"publisher","DOI":"10.1002\/mds.27626"},{"key":"22","doi-asserted-by":"publisher","DOI":"10.1016\/j.jamda.2014.05.009"},{"key":"23","article-title":"Factors associated with health-related quality of life in late stage Parkinson\u2019s disease","author":"K. Rosqvist","year":"2021","journal-title":"Movement Disorders Clinical Practice"},{"key":"24","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2318-10-77"},{"key":"25","doi-asserted-by":"publisher","DOI":"10.1111\/ane.12695"},{"key":"26","doi-asserted-by":"publisher","DOI":"10.1002\/mds.21567"},{"key":"27","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0226916"},{"key":"28","doi-asserted-by":"publisher","DOI":"10.1002\/mds.20393"},{"key":"29","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-016-1487-2"},{"key":"30","doi-asserted-by":"publisher","DOI":"10.1016\/j.archger.2019.103971"},{"issue":"1","key":"31","first-page":"29","article-title":"Personal autonomy for older people living in residential care: an overview","volume":"23","author":"V. Rodgers","year":"2007","journal-title":"Nursing Praxis in New Zealand Inc"},{"key":"32","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gny005"},{"key":"33","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2016.1181711"},{"key":"34","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-202096"},{"key":"35","doi-asserted-by":"publisher","DOI":"10.1100\/tsw.2010.221"},{"key":"36","doi-asserted-by":"publisher","DOI":"10.1155\/2017\/7436725"},{"key":"37","doi-asserted-by":"publisher","DOI":"10.1155\/2014\/718527"}],"container-title":["Parkinson's Disease"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/downloads.hindawi.com\/journals\/pd\/2021\/9475026.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/downloads.hindawi.com\/journals\/pd\/2021\/9475026.xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/downloads.hindawi.com\/journals\/pd\/2021\/9475026.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,3,16]],"date-time":"2021-03-16T19:53:03Z","timestamp":1615924383000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.hindawi.com\/journals\/pd\/2021\/9475026\/"}},"subtitle":[],"editor":[{"given":"Giovanni","family":"Mirabella","sequence":"additional","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2021,3,15]]},"references-count":37,"alternative-id":["9475026","9475026"],"URL":"https:\/\/doi.org\/10.1155\/2021\/9475026","relation":{},"ISSN":["2042-0080","2090-8083"],"issn-type":[{"value":"2042-0080","type":"electronic"},{"value":"2090-8083","type":"print"}],"subject":[],"published":{"date-parts":[[2021,3,15]]}}}