Dementia Carers Instrument Development: DECIDE
Research type
Research Study
Full title
Dementia Carers Instrument Development: DECIDE
IRAS ID
189379
Contact name
Penny Wright
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 10 months, 2 days
Research summary
Dementia Carers Instrument Development, DECIDE
The number of people living with dementia is rising, and friends and family provide much of the care needed. Maintaining carer quality of life (QoL) and finding a way of measuring it are important for carers, those cared for, and society. Numerous QoL questionnaires have been devised. However, some are too general, others are too long and some are not reliable. Recently the Medical Research Council called for proposals to develop a new QoL measure for carers of people with dementia. This project was developed in response to that call.Our key aim is to develop a new, reliable, valid measure to assess the QoL of informal carers (family, friends or neighbours) of people with dementia for use in individual carer assessment, for research and for health economic evaluation. The project will be carried out in two workstreams (WS). WS1 will focus on questionnaire development and WS2 on health economic aspects. This protocol relates to the first two phases of WS1, the objectives of which are to generate an item pool for the new questionnaire (phase 1) and to refine the item pool and agree response format (phase 2).
We propose to recruit a wide range of carers to ensure diverse perspectives. All will be supporting a person with dementia living in the community. They will be recruited via two third sector organisations and a National Health Service organisation. For phase 1 we will interview about 48 carers about their caring role. We will translate statements and themes from the interviews into questionnaire items. For phase 2 we will ask about 24 carers to try out the proposed items and comment on response format.
These phases will take approximately 8 months and result in the item pool to be taken forward in the next phase.
REC name
South Central - Oxford B Research Ethics Committee
REC reference
15/SC/0673
Date of REC Opinion
5 Nov 2015
REC opinion
Favourable Opinion