Measuring the social care outcomes of people with dementia and their carers
Award Number
NIHR200058Programme
Research for Patient BenefitStatus / Stage
CompletedDates
10 September 2019 -9 September 2021
Duration (calculated)
01 years 11 monthsFunder(s)
NIHRFunding Amount
£149,786.00Funder/Grant study page
NIHRContracted Centre
University of KentPrincipal Investigator
Dr Stacey RandPI Contact
s.e.rand@kent.ac.ukPI ORCID
0000-0001-9071-2842WHO Catergories
Methodologies and approaches for risk reduction researchDisease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 74 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | NIHR200058 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20190910 |
| End Date | 20210909 |
| Duration (calculated) | 01 years 11 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | University of Kent |
| Funding Amount | £149,786.00 |
Abstract
Are the ASCOT-Proxy and ASCOT-Carer valid, reliable and feasible measures of social care-related quality of life (SCRQoL) for people with dementia and their carers? Background: Community-based social care aims to improve the quality of life of service users and carers. The Adult Social Care Outcomes Toolkit (ASCOT) is as a self-report measure of SCRQoL designed to evaluate the impact of services on QoL. Among other adapted data collection methods, a proxy-report version of the tool (the ASCOT-Proxy) has been developed for use when someone is unable to self-report even with support or communication aids (e.g. easy-read). This tool may offer a way of capturing social care outcomes for people with moderate-to-severe dementia. Alongside the ASCOT measure of social care outcomes for service users, there is an ASCOT measure for carers (the ASCOT-Carer). The measure was developed through qualitative work with carers of people with diverse care needs. While the measurement properties and acceptability of the ASCOT-Carer has been established with a heterogeneous sample of carers, they have yet to be evidenced more specifically with carers of people with dementia. By establishing the measurement properties of these tools, we will further the development of tools available for use in social care research that may guide policy and practice. Participants will be invited to complete a brief follow-up survey one week after the initial survey completion. Construct validity will be evaluated by hypothesis testing. Factor structure will be assessed using factor analysis. Test-retest reliability will be assessed using the intra-class correlation coefficient (ICC) and internal reliability with Cronbach s alpha. Response rates, response distribution and missing data will be used as indicators of acceptability. Regression analysis will be conducted to establish the factors related dyadic social care outcomes of people with dementia and their carers. Timelines: The study duration is 24 months from 01 July 2019. Anticipated impact and dissemination: The anticipated impact is wider inclusion of people with dementia. The findings will be published as journal articles and conference presentations. They will also be shared with the Social Services User Survey Group (SSUSG) to discuss whether the findings and instruments may be incorporated into national data collections. The ASCOT-Proxy and –Carer questionnaires will be made publicly-available on the ASCOT website and findings considered in ASCOT guidance and training.
Aims
The study aims to establish the measurement properties of the ASCOT-Proxy and ASCOT-Carer measures. The study objectives are (1) to determine the measures construct validity, test-retest reliability and feasibility and (2) to establish the factors related to the social care outcomes of people with dementia and carers in relationship (i.e. as dyads ) to inform policy and practice. Methods: A self-completion mixed mode (postal or online) survey of 300 carers of people with dementia who use community-based social care services will collect SCRQoL data using the ASCOT-Proxy and ASCOT-Carer and QoL on other related measures (e.g. EQ-5D, DEMQOL), as well as other characteristics of the carer, care-recipient, service use and caregiving context.