Title: Adapting the Easy Read Adult Social Care Outcomes Toolkit (ASCOT-ER) for older social care users who need additional support to self-report: a content validity study
Funder: Department of Health and Social Care

Abstract: Background The Adult Social Care Outcomes Toolkit (ASCOT) measures the impact of social care on users social care-related quality of life (SCRQoL). It is used to gather the views and experiences of people using services and inform indicators in the national Adult Social Care Outcomes Framework (ASCOF) in England. Recent research has shown that the oldest social care users and those with cognitive decline are under-represented in national surveys. Easy to read adaptations, using simplified text and pictures to support understanding, are one way to support people to continue to give their views for longer. An ASCOT-Easy Read (ASCOT-ER) has already been co-developed and tested with adults with intellectual disabilities and autism but consultation with older people and their carers indicates it requires adaptation for use with older adults. Aims and Objectives This study aims to adapt the ASCOT-ER for older people. The objective is to make it easier for older social care users to complete the questionnaire themselves, so that they can tell care providers, policy makers and researchers how they feel about their own SCRQoL. Methods We propose a qualitative design involving older social care users as research advisors co-producing the adapted tool, and participants testing it. A co-production working group of 6-8 older social care users and their informal carers will be established to evaluate the comprehensiveness, relevance and comprehensibility of the ASCOT-ER images, wording and layout. Altogether, the working group will meet 5-6 times over 24 months and will be involved in all decision making. Members will be paid for their time at INVOLVE rates. Changes made by the working group will be iteratively tested using cognitive interviewing techniques (think aloud) with up to 30 older social care users who struggle to self-complete conventional surveys. We have already confirmed support for recruitment from Age UK, the six Forget-me-Not groups across Kent and Medway (run by a clinical co-applicant on this proposal) and the Clinical Research Network (CRN) (costs included). Ethical approval will be sought from the national Social Care Research Ethics Committee (SCREC) to undertake primary data collection with older social care users. Research governance approval will be sought from local authorities (maximum four) in which we plan to recruit. Timelines This 24 month study will start in April 2022 and a sector-ready, beta version of the tool will be ready by May 2024. Anticipated impact and Dissemination As well as two peer-reviewed publications, webinars/conferences and lay summaries, we plan to ensure clear pathways to impact and wider dissemination through: a sector-ready ASCOT-ER questionnaire for older adults (available to download for free: https://www.pssru.ac.uk/ascot/tools/ ), a training video showcasing how to use the ASCOT-ER, a set of testimonial style short videos about working group members experiences and one-page easy-read infographic summaries. We will apply for further funding to psychometrically test the measure, in collaboration with sector partners using the beta version of the tool developed in this study.

Lay abstract: Aims This study aims to produce a new easy to read version of a widely used measure of quality of life called the ASCOT (Adult Social Care Outcomes Toolkit). Some older people using social care (age 65+) find it difficult to complete the ASCOT because of memory problems or very old age. This means their voices are not being heard. The aim is to make it easier for them to complete the questionnaire themselves, so that they can tell care providers, policy makers and researchers how they feel. Background ASCOT is used in lots of countries around the world to measure how social care affects people s lives. In the past, we worked with adults with learning disabilities and added pictures and simplified the words to help them understand. We called this the ASCOT-Easy Read. Lots of people want to use the ASCOT- Easy Read with older people but first older people need to help us make some changes. Method We will work with a group of older people and their carers to adapt the ASCOT-Easy Read for this age group. Then we will test this new version with people who find questionnaires difficult to complete. We expect to have to repeat this process a few times to get it right. Altogether, we will meet with the working group 5-6 times and will test the new version with up to 30 older people. Service user and carer involvement When preparing for this application, we talked to six older people (two living with dementia and four informal carers). They looked at the ASCOT-Easy Read and said some of the pictures were confusing and needed to change. They also thought some of the words might need changing. They all thought this study was important. One informal carer said: &ldquo;we need to have proper evidence from the very people who are receiving care. Thank you very much for giving us an opportunity to have a voice.&rdquo; Our working group will be made up of older people with lived experience. Members will be involved in all decisions and will also be invited to take part in presentations, blogs and a training video. The video will teach care providers and others how best to help older people complete the new measure. Two older users/carers will sit on our study steering group. Everyone involved in the study will be given training and support by the University of Kent and paid for their time at INVOLVE rates. Dissemination As well as journal articles and presentations at academic conferences, we will produce: Training videos and guidance. A webinar, blogs and an Easy Read summary of our findings for study participants.

Research activity codes: 8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: NEUROLOGICAL;GENERIC HEALTH RELEVANCE