Professor Sube Banerjee
University of Sussex
C-DEMQOL - Measurement of quality of life in family carers of people with dementia: development of a new instrument for evaluation
To generate a new instrument (C-DEMQOL) to evaluate QOL across caring situations, severity and complexity in dementia using a sequential 7-stage process from previous successful dementia QOL development studies.
S1 ITEM POOL GENERATION
Based on the stress process model, we will (i) complete a focussed literature review, (ii) complete 40 new in-depth individual qualitative interviews (IIIs) and 4 focus group discussions; and (iii) use our direct access to research datasets to complete construct mapping and generate items.
S2 INITIAL DEVELOPMENT OF QUESTIONNAIRE
Analyses of S1 data will be used to generate the conceptual framework and items will be devised, extracted, listed and assessed in 25 carers.
S3 PRELIMINARY FIELD TESTING
Testing item response rates and participant acceptability in 120 carers.
S4 DEVELOPMENT OF INSTRUMENT FOR FINAL FIELD TESTING
Analyses using modern psychometric techniques to identify the subset of items that form a homogeneous set in respect to the target construct, QOL, and provide most information for measurement of the construct.
S5 FINAL FIELD TESTING
In a new sample of 300 family carers, assessed with C-DEMQOL and a package of instruments designed to assess comprehensive health status, functioning and service use of the carer and the person with dementia.
S6 PSYCHOMETRIC EVALUATION
To evaluate the psychometric properties of C-DEMQOL inc validity and measurement precision (inc reliability); generation of scoring protocols and norms.
S7 RESPONSIVENESS TESTING
Using C-DEMQOL in two funded ESRC studies led by co-applicants.
The carers will be drawn from the clinical/case registers of the clinical applicants.