Care partner needs of people with neurodegenerative disorders: what are the needs, and how well do the current assessment tools capture these needs?: a systematic meta-review
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- dc.contributor.author Kinchin, Irina
- dc.contributor.author Edwards, Layla
- dc.contributor.author Adrion, Emily
- dc.contributor.author Chen,Yaohua
- dc.contributor.author Ashour, Aya
- dc.contributor.author Leroi, Iracema
- dc.contributor.author Brugulat Serrat, Anna, 1986-
- dc.contributor.author Phillips, Jane
- dc.contributor.author Masterson, Fiona
- dc.contributor.author Kochovska, Slavica
- dc.date.accessioned 2022-11-10T08:10:53Z
- dc.date.available 2022-11-10T08:10:53Z
- dc.date.issued 2022
- dc.description Data de publicació electrónica: 24-05-2022
- dc.description.abstract Objectives: the burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools. Methods: we conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis. Results: drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools. Conclusions: current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.
- dc.format.mimetype application/pdf
- dc.identifier.citation Kinchin I, Edwards L, Adrion E, Chen Y, Ashour A, Leroi I, et al. Care partner needs of people with neurodegenerative disorders: what are the needs, and how well do the current assessment tools capture these needs?: a systematic meta-review. Int J Geriatr Psychiatry. 2022 May 24; 37(7):10.1002/gps.5764. DOI: 10.1002/gps.5764
- dc.identifier.doi http://dx.doi.org/10.1002/gps.5764
- dc.identifier.issn 0885-6230
- dc.identifier.uri http://hdl.handle.net/10230/54783
- dc.language.iso eng
- dc.publisher Wiley
- dc.rights Copyright © 2022. Kinchin I, Edwards L, Adrion E, Chen Y, Ashour A, Leroi I, et al. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd. This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
- dc.rights.accessRights info:eu-repo/semantics/openAccess
- dc.rights.uri http://creativecommons.org/licenses/by-nc-nd/4.0/
- dc.subject.keyword Alzheimer's
- dc.subject.keyword Assessment tool
- dc.subject.keyword Care partners
- dc.subject.keyword Caregivers
- dc.subject.keyword Carers
- dc.subject.keyword Cognitive impairment
- dc.subject.keyword Dementia
- dc.subject.keyword Descriptive system
- dc.subject.keyword Economic evaluation
- dc.subject.keyword Instrument
- dc.subject.keyword Meta-review
- dc.subject.keyword Needs assessment
- dc.subject.keyword Neurodegenerative disorders
- dc.subject.keyword Systematic review
- dc.title Care partner needs of people with neurodegenerative disorders: what are the needs, and how well do the current assessment tools capture these needs?: a systematic meta-review
- dc.type info:eu-repo/semantics/article
- dc.type.version info:eu-repo/semantics/publishedVersion