Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)
dc.contributor.author | Horton, MC | |
dc.contributor.author | Oyebode, J | |
dc.contributor.author | Clare, L | |
dc.contributor.author | Megson, M | |
dc.contributor.author | Shearsmith, L | |
dc.contributor.author | Brayne, C | |
dc.contributor.author | Kind, P | |
dc.contributor.author | Hoare, Z | |
dc.contributor.author | Al Janabi, H | |
dc.contributor.author | Hewison, V | |
dc.contributor.author | Tennant, A | |
dc.contributor.author | Wright, P | |
dc.date.accessioned | 2019-11-21T13:59:32Z | |
dc.date.issued | 2019-11-05 | |
dc.description.abstract | A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers’ needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends). Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken. Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test–retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100). Discussion and Implications SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations. | en_GB |
dc.description.sponsorship | Medical Research Council (MRC) | en_GB |
dc.identifier.citation | Published online 05 November 2019 | en_GB |
dc.identifier.doi | 10.1093/geront/gnz136 | |
dc.identifier.grantnumber | MR/M025179/1 | en_GB |
dc.identifier.uri | http://hdl.handle.net/10871/39679 | |
dc.language.iso | en | en_GB |
dc.publisher | Oxford University Press | en_GB |
dc.rights | © The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. | en_GB |
dc.subject | Carers | en_GB |
dc.subject | Dementia | en_GB |
dc.subject | Quality of life | en_GB |
dc.subject | Needs-led | en_GB |
dc.subject | Rasch measurement | en_GB |
dc.subject | Psychometrics | en_GB |
dc.title | Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR) | en_GB |
dc.type | Article | en_GB |
dc.date.available | 2019-11-21T13:59:32Z | |
dc.identifier.issn | 0016-9013 | |
dc.description | This is the final published version. Available from Oxford University Press via the DOI in this record. | en_GB |
dc.identifier.journal | The Gerontologist | en_GB |
dc.rights.uri | https://creativecommons.org/licenses/by/4.0/ | en_GB |
dcterms.dateAccepted | 2019-09-06 | |
rioxxterms.version | VoR | en_GB |
rioxxterms.licenseref.startdate | 2019-09-06 | |
rioxxterms.type | Journal Article/Review | en_GB |
refterms.dateFCD | 2019-11-21T13:57:51Z | |
refterms.versionFCD | VoR | |
refterms.dateFOA | 2019-11-21T13:59:35Z | |
refterms.panel | A | en_GB |
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Except where otherwise noted, this item's licence is described as © The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits
unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.