{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T15:29:24Z","timestamp":1790090964453,"version":"4.0.1"},"reference-count":59,"publisher":"Cambridge University Press (CUP)","issue":"1","license":[{"start":{"date-parts":[[2021,11,8]],"date-time":"2021-11-08T00:00:00Z","timestamp":1636329600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Can. J. Neurol. Sci."],"published-print":{"date-parts":[[2023,1]]},"abstract":"<jats:title>Abstract:<\/jats:title><jats:sec id=\"S0317167121002523_as1\"><jats:title>Background:<\/jats:title><jats:p>Multiple system atrophy (MSA) is a rare Parkinson-plus syndrome with rapid progression and a high symptom burden. The experience of caregivers of people with MSA has not been closely examined. We therefore sought to document the impact of MSA on caregivers using a mixed methods approach.<\/jats:p><\/jats:sec><jats:sec id=\"S0317167121002523_as2\"><jats:title>Methods:<\/jats:title><jats:p>Patients and caregivers were recruited from a movement disorders program in Edmonton, Canada. Participants completed the following survey instruments based on their own or their loved one\u2019s symptoms: 36-Item Short-Form Health Survey (SF-36), Multiple System Atrophy health-related Quality of Life scale (MSA-QoL), and Hospital Anxiety and Depression Scale (HADS). Caregivers also completed the Zarit Burden Interview and HADS based on their own experience. Qualitative data were obtained through semi-structured interviews.<\/jats:p><\/jats:sec><jats:sec id=\"S0317167121002523_as3\"><jats:title>Results:<\/jats:title><jats:p>Nine people with MSA (PwMSA) (age range: 48\u201378 years) and 11 caregivers (49\u201376 years) participated. All completed surveys; 7 PwMSA and 10 caregivers were interviewed. Eight PwMSA had the parkinsonian type of MSA (MSA-P) and one a mixed type. Caregivers had on average mild-moderate caregiver burden and mild anxiety. Caregiver burden and anxiety were correlated. Qualitative subthemes under the caregiving theme included keeping the patient safe, caregivers\u2019 own health, and communication symptoms cause frustration. The rapid progression of illness was bewildering to caregivers and increased their workload. Public home care services were invaluable to caregivers\u2019 maintaining their loved ones at home. Caregivers were inventive in finding sources of hope and quality of life for their loved ones.<\/jats:p><\/jats:sec><jats:sec id=\"S0317167121002523_as4\"><jats:title>Conclusion:<\/jats:title><jats:p>Publicly funded home care was essential for caregivers of PwMSA in this study. Caregiver support is needed to provide this unrecognized workforce with information and resources to face this challenging condition.<\/jats:p><\/jats:sec>","DOI":"10.1017\/cjn.2021.252","type":"journal-article","created":{"date-parts":[[2021,11,8]],"date-time":"2021-11-08T00:20:45Z","timestamp":1636330845000},"page":"49-59","source":"Crossref","is-referenced-by-count":10,"title":["Multiple System Atrophy Caregivers\u2019 Experience: A Mixed Methods Study"],"prefix":"10.1017","volume":"50","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6771-1160","authenticated-orcid":false,"given":"Beth","family":"Langford","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yiling","family":"Zhou","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janis M.","family":"Miyasaki","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2021,11,8]]},"reference":[{"key":"S0317167121002523_ref29","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2018.1482353"},{"key":"S0317167121002523_ref10","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.c4587"},{"key":"S0317167121002523_ref3","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2017.26"},{"key":"S0317167121002523_ref58","doi-asserted-by":"publisher","DOI":"10.1111\/jrh.12273"},{"key":"S0317167121002523_ref55","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-019-1403-9"},{"key":"S0317167121002523_ref22","doi-asserted-by":"publisher","DOI":"10.1080\/08870440008400302"},{"key":"S0317167121002523_ref41","doi-asserted-by":"publisher","DOI":"10.1016\/j.jstrokecerebrovasdis.2021.105966"},{"key":"S0317167121002523_ref1","unstructured":"1. 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