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


Our previous work identified a need for methods for assessing the quality and outcomes of people who are unable to express their opinions, even with support or through a less structured interview. This would include people with severe dementia, mental health problems, intellectual and communication disabilities, or cognitive impairments (e.g. following physical or physiological trauma) who, due to physical or sensory disabilities, experience communication difficulties that prevent their participation in research using questionnaires and interviews.

The overarching aim of this stream of work is to develop approaches to facilitating wider inclusion of these groups in the evidence base. This evidence base includes both research studies and national and local patient experience and service user surveys. The objective is to use the Adult Social Care Outcome Tool (ASCOT), developed by PSSRU, as a case study. We know from our support activities there is demand from councils and providers for widening the applicability for ASCOT, and it has direct relevance to current policy as it forms part of the Adult Social Care Outcomes Framework (ASCOF) (see also the Measurement theme below). However, the intention would be for the research to inform future work on the development and collection of PROMs and other data collections relevant to people with long-term conditions.

The current version of the toolkit includes questionnaires, interview schedules and a mixed-methods approach for identifying outcomes for residents of care homes. The aim would be to widen inclusion to currently excluded groups, such as those with cognitive impairment living in their own homes, and to alternative methods for identifying the perspectives of excluded groups.

The details and timing would be discussed with customers, but we anticipate four activity strands under this theme which would:

  1. Develop and validate an Easy-Read version of ASCOT for use in both residential and community settings
  2. Develop and validate a proxy version of ASCOT for use in both residential and community settings
  3. Adapt the mixed method ASCOT tool (CH3) for use with people living in their own home in the community and trial its use
  4. Explore the use of qualitative evidence, obtained from people being able to answer ASCOT questions in their own words rather than choosing a fixed response category

Please click on the links above to find out more about each strand of the project.

Our review (Beadle Brown et al 2012) provides us with a starting point in developing methods for widening inclusion of people with severe cognitive and communication difficulties. In each strand we would draw on the review to explore and develop practical ways to widen the evidence about the experiences and outcomes of people with long-term conditions. Throughout the work, we would ensure that results from each strand inform the others, both to use our resources most effectively and to ensure quality products.

Timing and Outputs

Each of the strands would produce papers on their findings, and the results would be fed into the ASCOT website to ensure that ASCOT users have access as soon as feasible. Peer-reviewed articles would report on validity and reliability results and substantive findings about the SCRQoL of groups previously excluded from the evidence base. Summary findings would be made available through our website to ensure open access.

The above activities will be staggered. The Easy-Read version has potential value for the IIASC study so we propose to proceed with this during 2013 in order both to take advantage of opportunities for testing the instrument and to add value to that project. A paper would be produced that reports on the initial stages of this work. The timing of the qualitative work will be driven in part by links to the NIHR SSCR-funded project. The development of a proxy version will be the most resource-intensive, so we do not anticipate this reporting until 2014. Ideally, the mixed-methods approach draws on early findings of the other strands so again would report early in 2015.

Research Team

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

Please note: This project is concerned with the development of appropriate tools and methods whilst the follow-on project “Testing and validating methods for wider inclusion of people with severe intellectual, communication and cognitive impairments” (outlined on the engagement web page) will concern the testing and validating of these methods.

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