A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers

Abstract Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administer...

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Main Authors: Gill Windle, Catherine MacLeod, Katherine Algar-Skaife, Joshua Stott, Claire Waddington, Paul M. Camic, Mary Pat Sullivan, Emilie Brotherhood, Sebastian Crutch
Format: Article
Language:English
Published: BMC 2022-11-01
Series:BMC Medical Research Methodology
Subjects:
Online Access:https://doi.org/10.1186/s12874-022-01747-x
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author Gill Windle
Catherine MacLeod
Katherine Algar-Skaife
Joshua Stott
Claire Waddington
Paul M. Camic
Mary Pat Sullivan
Emilie Brotherhood
Sebastian Crutch
author_facet Gill Windle
Catherine MacLeod
Katherine Algar-Skaife
Joshua Stott
Claire Waddington
Paul M. Camic
Mary Pat Sullivan
Emilie Brotherhood
Sebastian Crutch
author_sort Gill Windle
collection DOAJ
description Abstract Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles. Two authors independently extracted data. They critically reviewed the measurement properties from the available psychometric data in the studies, using a standardised checklist adapted for purpose. Fifty-one studies were included in the final review, which applied nine different resilience measures, eight developed in other populations and one developed for dementia carers in Thailand. None of the measures were developed for use with people living with dementia. The majority of studies (N = 47) focussed on dementia carers, three studies focussed on people living with dementia and one study measured both carers and the person with dementia. All the studies had missing information regarding the psychometric properties of the measures as applied in these two populations. Nineteen studies presented internal consistency data, suggesting seven of the nine measures demonstrate acceptable reliability in these new populations. There was some evidence of construct validity, and twenty-eight studies hypothesised effects a priori (associations with other outcome measure/demographic data/differences in scores between relevant groups) which were partially supported. The other studies were either exploratory or did not specify hypotheses. This limited evidence does not necessarily mean the resilience measure is not suitable, and we encourage future users of resilience measures in these populations to report information to advance knowledge and inform further reviews. All the measures require further psychometric evaluation in both these populations. The conceptual adequacy of the measures as applied in these new populations was questionable. Further research to understand the experience of resilience for people living with dementia and carers could establish the extent current measures -which tend to measure personal strengths -are relevant and comprehensive, or whether further work is required to establish a new resilience outcome measure.
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spelling doaj.art-e7fe8a5ac1a74256b8b5eb781c3d313f2022-12-22T04:39:01ZengBMCBMC Medical Research Methodology1471-22882022-11-0122114110.1186/s12874-022-01747-xA systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carersGill Windle0Catherine MacLeod1Katherine Algar-Skaife2Joshua Stott3Claire Waddington4Paul M. Camic5Mary Pat Sullivan6Emilie Brotherhood7Sebastian Crutch8Ageing and Dementia @ Bangor, Dementia Services Development Centre (DSDC), School of Medical and Health Sciences, Bangor UniversityAgeing and Dementia @ Bangor, Dementia Services Development Centre (DSDC), School of Medical and Health Sciences, Bangor UniversityDepartment of Neuromedicine and Movement Science (INB), Norwegian University of Science and Technology (NTNU)Department of Clinical, Educational and Health Psychology, University College London (UCL)4Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL)4Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL)Faculty of Education and Professional Studies, School of Social Work, Nipissing University4Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL)4Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL)Abstract Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles. Two authors independently extracted data. They critically reviewed the measurement properties from the available psychometric data in the studies, using a standardised checklist adapted for purpose. Fifty-one studies were included in the final review, which applied nine different resilience measures, eight developed in other populations and one developed for dementia carers in Thailand. None of the measures were developed for use with people living with dementia. The majority of studies (N = 47) focussed on dementia carers, three studies focussed on people living with dementia and one study measured both carers and the person with dementia. All the studies had missing information regarding the psychometric properties of the measures as applied in these two populations. Nineteen studies presented internal consistency data, suggesting seven of the nine measures demonstrate acceptable reliability in these new populations. There was some evidence of construct validity, and twenty-eight studies hypothesised effects a priori (associations with other outcome measure/demographic data/differences in scores between relevant groups) which were partially supported. The other studies were either exploratory or did not specify hypotheses. This limited evidence does not necessarily mean the resilience measure is not suitable, and we encourage future users of resilience measures in these populations to report information to advance knowledge and inform further reviews. All the measures require further psychometric evaluation in both these populations. The conceptual adequacy of the measures as applied in these new populations was questionable. Further research to understand the experience of resilience for people living with dementia and carers could establish the extent current measures -which tend to measure personal strengths -are relevant and comprehensive, or whether further work is required to establish a new resilience outcome measure.https://doi.org/10.1186/s12874-022-01747-xResilienceDementiaCarerSystematic reviewOutcome measureEvaluation
spellingShingle Gill Windle
Catherine MacLeod
Katherine Algar-Skaife
Joshua Stott
Claire Waddington
Paul M. Camic
Mary Pat Sullivan
Emilie Brotherhood
Sebastian Crutch
A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers
BMC Medical Research Methodology
Resilience
Dementia
Carer
Systematic review
Outcome measure
Evaluation
title A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers
title_full A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers
title_fullStr A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers
title_full_unstemmed A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers
title_short A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers
title_sort systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers
topic Resilience
Dementia
Carer
Systematic review
Outcome measure
Evaluation
url https://doi.org/10.1186/s12874-022-01747-x
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