Testing and validating methods for wider inclusion of people with severe intellectual, communication and cognitive impairments

Background

This project follows on from the methods development work described previously on the Engagement theme page (click here to access the summary), and will robustly assess and test the validity of the methods proposed. The nature of this work is conditional on the results of the previous project, as is the timing, and the proposed activities of this project are, as such, only described in broad terms at this stage. The work would require substantial fieldwork that would be beyond the resources of QORU so would be subject to negotiation with the Department of Health.

Aim

The overarching aim of this project would be to test the validity and reliability of the methods and versions developed. We would:

  • Test the validity and reliability of the ASCOT-proxy, ASCOT-PH (private home) and Easy-Read (ASCOT-ER) versions
  • Identify the most appropriate respondent when using the proxy version of ASCOT
  • Explore the relationship between the responses to different versions of ASCOT, to enable users of ASCOT to crosswalk or at least compare responses from the different versions in an informed way
  • Develop approaches to presentation and facilitating the use of data generated through different methods by the Department of Health, local councils, providers, researchers and others

Methods

The four strands of work developed during the earlier project will be used to inform the design of the testing process. Smaller-scale testing exercises will be carried out prior to larger-scale cross-validation work to boost confidence in the instruments, and it is anticipated that such work will generate practice- and policy-relevant findings about these groups for the Department of Health and participating councils. We would link with the ASCS development and support stream of work (A04) to ensure that the results draw on and inform the survey and the ASCOF.

We propose taking two approaches to validation. First, we will explore the construct validity of ASCOT-proxy and ASCOT-ER by looking at the relationship between responses to the individual items and other indicators that we would expect to be theoretically related to these concepts. Second, we propose validating ASCOT-proxy and ASCOT-ER against ASCOT-CH3 (the care home mixed-methods) and equivalent approach developed for private households (ASCOT- PH).

At this stage we anticipate that this would involve:

  • A small-scale pilot field test of the proxy instrument (ASCOT-proxy) to
    • Explore the distribution of responses and feasibility of use followed by revision of questions, if necessary
    • Identify the most appropriate proxy
  • An exploration of the inter-rater reliability and validity of the mixed-methods approach for people with dementia and people with learning disabilities living in private households (ASCOT-PH)
  • A larger-scale study of people with learning disabilities that will explore the validity and reliability of the revised versions of the ASCOT-proxy, the ASCOT-PH and Easy-Read (ASCOT-ER), ideally also generating qualitative data for a sub-sample
  • A larger-scale study of older people with dementia that will explore the validity and reliability of the revised versions of the ASCOT-proxy and observation element of the ASCOT-PH, ideally also generating qualitative data for a sub-sample
  • Drawing on the results of these studies and working with potential users of the data, we would develop approaches to presentation and facilitating the use of data generated through these different methods

Timing and Outputs

This project would follow its predecessor project and, we anticipate, would be carried out in the last year of the current QORU timeframe. The work is also conditional on acquiring additional funding that would be needed for the large-scale primary research involved. The main outputs would be research papers on the testing and validity questions, but the samples involved would also provide rich data about the impact of services and support for these groups of people on their care-related quality of life. These data would be valuable in feeding into the projects outlined below under the Application theme.

Research Team

Joanna Apps, Sara Ryan, James Caiels, Juliette Malley, Julie Beadle-Brown, Stacey Rand, Nick Smith, Agnes Turnpenny, Lisa Richardson, Rebecca Whelton