Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL
Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL
Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. Results: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: ‘meeting personal needs’ (ω = 0.95); ‘carer wellbeing’ (ω = 0.91); ‘carer-patient relationship’ (ω = 0.82); ‘confidence in the future’ (ω = 0.90) and ‘feeling supported’ (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.
Alzheimer’s disease, Bifactor model, Caregiver, Dementia, Factor analysis, Family carer, Quality of life
Brown, Anna
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Page, Thomas E.
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Daley, Stephanie
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Farina, Nicolas
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Basset, Thurstine
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Livingston, Gill
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Budgett, Jessica
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Gallaher, Laura
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Feeney, Yvonne
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Murray, Joanna
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Bowling, Ann
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Knapp, Martin
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Banerjee, Sube
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Brown, Anna
22273f65-a3b9-4c8e-a4fd-54b86cd9d588
Page, Thomas E.
96698df4-5dff-4aea-a205-d5004aaed43e
Daley, Stephanie
338c7a65-d739-4f95-8e6c-5ba7e6615473
Farina, Nicolas
1a2b8f7f-a5f8-4ff8-a32e-df6d43ada369
Basset, Thurstine
ea6b196c-53c6-437d-9218-aee894c3c410
Livingston, Gill
ea18efb5-2f07-42a9-be5e-0d7b5b02f229
Budgett, Jessica
7ef556c4-3716-445f-abb9-e401d00dd805
Gallaher, Laura
5872ee42-bc9e-4608-b800-e414eb1aca20
Feeney, Yvonne
30771cd3-867a-47a4-9aa8-9279c58048ae
Murray, Joanna
e4c89a6e-d81c-4378-8786-0e82eeed6b58
Bowling, Ann
796ca209-687f-4079-8a40-572076251936
Knapp, Martin
39b0d60c-30b1-4b9b-bc7f-13c5bdc7e712
Banerjee, Sube
c89df0e0-46cf-482b-ac93-6c39333c93b5
Brown, Anna, Page, Thomas E., Daley, Stephanie, Farina, Nicolas, Basset, Thurstine, Livingston, Gill, Budgett, Jessica, Gallaher, Laura, Feeney, Yvonne, Murray, Joanna, Bowling, Ann, Knapp, Martin and Banerjee, Sube
(2019)
Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL.
Quality of Life Research.
(doi:10.1007/s11136-019-02186-w).
Abstract
Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures. Results: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: ‘meeting personal needs’ (ω = 0.95); ‘carer wellbeing’ (ω = 0.91); ‘carer-patient relationship’ (ω = 0.82); ‘confidence in the future’ (ω = 0.90) and ‘feeling supported’ (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.
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Accepted/In Press date: 17 April 2019
e-pub ahead of print date: 27 April 2019
Keywords:
Alzheimer’s disease, Bifactor model, Caregiver, Dementia, Factor analysis, Family carer, Quality of life
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Local EPrints ID: 430793
URI: http://eprints.soton.ac.uk/id/eprint/430793
ISSN: 0962-9343
PURE UUID: d5298b0a-d72e-4f4a-a527-08e9b84d9259
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Date deposited: 13 May 2019 16:30
Last modified: 16 Mar 2024 01:48
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Contributors
Author:
Anna Brown
Author:
Thomas E. Page
Author:
Stephanie Daley
Author:
Nicolas Farina
Author:
Thurstine Basset
Author:
Gill Livingston
Author:
Jessica Budgett
Author:
Laura Gallaher
Author:
Yvonne Feeney
Author:
Joanna Murray
Author:
Martin Knapp
Author:
Sube Banerjee
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