Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL

Autor: Joanna Murray, Sube Banerjee, Laura Marie Gallaher, Nicolas Farina, Martin Knapp, Yvonne Feeney, Stephanie Daley, Anna Brown, Jessica Budgett, Thomas E. Page, Ann Bowling, Thurstine Basset, Gill Livingston
Rok vydání: 2019
Předmět:
Male
Bifactor model
Emotions
0302 clinical medicine
Quality of life
RA0421 Public health. Hygiene. Preventive Medicine
Surveys and Questionnaires
London
media_common
Aged
80 and over

030503 health policy & services
Focus Groups
Middle Aged
humanities
Caregivers
Feeling
030220 oncology & carcinogenesis
H1
Female
Factor analysis
0305 other medical science
Psychology
Alzheimer’s disease
Clinical psychology
Adult
medicine.medical_specialty
Psychometrics
media_common.quotation_subject
BF
Article
Young Adult
03 medical and health sciences
medicine
Humans
Dementia
Family carer
Aged
Public health
Public Health
Environmental and Occupational Health

Discriminant validity
Reproducibility of Results
Construct validity
HQ The family. Marriage. Woman
Caregiver
medicine.disease
Focus group
Mental health
Factor Analysis
Statistical
Zdroj: Quality of Life Research
ISSN: 1573-2649
0962-9343
DOI: 10.1007/s11136-019-02186-w
Popis: 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. Electronic supplementary material The online version of this article (10.1007/s11136-019-02186-w) contains supplementary material, which is available to authorized users.
Databáze: OpenAIRE
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