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  • Mike C Horton
    University of Leeds
  • Jan Oyebode
    University of Bradford
  • Linda Clare
    University of Exeter
  • Molly Megson
    University of Leeds
  • Leanne Shearsmith
    University of Leeds
  • Carol Brayne
    University of Cambridge
  • Paul Kind
    University of Leeds
  • Zoe Hoare
  • Hareth Al Janabi
    University of Birmingham
  • Val Hewison
    Carers Leeds, UK
  • Alan Tennant
    University of Leeds
  • Penny Wright
    University of Exeter
Abstract Background and Objectives 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). Methods 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. Results 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.

Keywords

  • Carers, Dementia, Quality of Life, Needs-led, Rasch measurement, Psychometrics
Original languageEnglish
Pages (from-to)e1-e11
JournalGerontologist
Volume61
Issue number3
Early online date5 Nov 2019
DOIs
Publication statusPublished - 3 Apr 2021

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