Adapting the Easy Read Adult Social Care Outcomes Toolkit (ASCOT-ER) for older social care users who need additional support to self-report
| ISRCTN | ISRCTN16722548 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN16722548 |
| IRAS number | 316222 |
| Secondary identifying numbers | NIHR202974, IRAS 316222 |
- Submission date
- 09/12/2022
- Registration date
- 19/12/2022
- Last edited
- 28/01/2025
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Other
Plain English Summary
Background and study aims
The Adult Social Care Outcomes Toolkit (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.
This study aims to produce a new ‘easy to read’ version of a widely used measure of quality of life called the ASCOT. 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.
Who can participate?
People aged 65 years and over who are using adult social care services and need help completing paperwork or questionnaires are eligible to take part.
What does the study involve?
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.
What are the possible benefits and risks of participating?
Everyone who takes part will be thanked for their time with a £20 high street voucher.
There is a small risk that participants might become upset when talking about their experiences during the interview. If this happens the researcher will offer the participant the opportunity to pause and have a break, offer to talk about something else, or stop the interview. The researcher will also offer to contact someone who can provide the person with support.
Where is the study run from?
The University of Kent, Canterbury, UK.
When is the study starting and how long is it expected to run for?
May 2022 to April 2024
Who is funding the study?
This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Social Care (RfSC) Programme (Grant Reference Number NIHR202974). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Who is the main contact?
Professor Ann-Marie Towers (A.Towers@kent.ac.uk)
Contact information
Principal Investigator
41 Webster Way
Hawkinge
CT18 7PZ
United Kingdom
 ORCID ID |
0000-0003-3597-1061 |
|---|---|
| Phone | +44 1227 76400 (switchboard) |
| A.Towers@kent.ac.uk |
Study information
| Study design | Content validity |
|---|---|
| Primary study design | Observational |
| Secondary study design | Content validity study |
| Study setting(s) | Home |
| Study type | Quality of life |
| Participant information sheet | Not available in web format, please use contact details to request a participant information sheet. |
| Scientific 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 |
| Study acronym | ASCOT-ER Study |
| Study hypothesis | 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 codeveloped 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. 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. |
| Ethics approval(s) | Approved 14/12/2022, Coventry and Warwick Research Ethics Committee (The Old Chapel, Royal Standard Place, Nottingham, NG1 6FS, UK; +44 207 104 8009; coventryandwarwick.rec@hra.nhs.uk), 22/WM/0234 |
| Condition | Social Care |
| Intervention | A co-production working group of 6-8 older social care users and their informal carers has been 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 NIHR 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. The primary method of recrutiment for the cognitive interviews will be through the DETERMIND study. The DETERMIND study (REC 19/LO/0528; IRAS 261263; https://determind.org.uk/) is led by Brighton and Sussex Medical School, Newcastle University and King’s College, London. It is aiming to recruit 900+ people living with dementia within 6 months of their dementia diagnosis, and then to follow them up with yearly visits collecting data for 3 years. Part of the study’s remit is to support the recruitment of other linked studies, of which the ASCOT-ER study is now a linked study. Participants will also be recruited via Local Authorities with Social Services Responsibilities and memory clinics. |
| Intervention type | Behavioural |
| Primary outcome measure | Cognitive interviews using a ‘think aloud’ method, with probing questions to assess comprehension, judgement (weighing up of response options) and response to each item, will be used to explore participants’ understanding of the newly adapted Adult Social Care Outcomes Toolkit (ASCOT) Easy Read questionnaire. The interviews will also explore the questionnaire layout, format and images. This will include making a note of issues relating to physical and sensory age-related decline (e.g. is the text big enough for people to read with their glasses on? Were there any barriers relating to holding a pen and making a mark in a box?). If the person is unable to self-complete (e.g. they repeatedly lose their place, do not understand how to respond, show signs of distress or ask for help/clarification on the same point more than once), the researcher will stop the cognitive interview and will instead administer the ASCOT-ER as a supported interview, using a staggered-reveal approach. Following the approach used in our previous research to develop and test the ASCOT-ER with adults with intellectual disabilities and autism, the analysis will be led by three main questions: a. Can participants understand the questions and response options? b. Are they able to answer the questions based on their own experiences? c. Do the pictures help people answer the questions? We will use framework analysis with the lenses of comprehension, interpretation, judgement, response, relevance and comprehensiveness to answer these questions. Participants will be classified as being ‘independent’ or ‘assisted’ in the response process with further classification as to whether the assistance was required to ‘manage’ the demands of the process (e.g. holding a pen, maintaining focus on topic) or related to ‘comprehensibility’ (e.g. ability to make sense of the domain through the text explanation or the pictorial). |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 01/05/2022 |
| Overall study end date | 30/04/2024 |
Eligibility
| Participant type(s) | Other |
|---|---|
| Age group | Senior |
| Lower age limit | 65 Years |
| Sex | Both |
| Target number of participants | Up to 30 participants |
| Total final enrolment | 25 |
| Participant inclusion criteria | 1. Aged 65 years or over 2. Receiving community-based social care (e.g. home care, day centre, personal budget) 3. Living in their own or another person’s home 4. Needs help with questionnaires and paperwork (ie: stand to benefit from an Easy Read format) 5. Has capacity to consent |
| Participant exclusion criteria | 1. Under 65 years 2. Live in a care home 3. Not receiving social care 4. Able to complete a questionnaire without help 5. Lacks capacity to consent |
| Recruitment start date | 09/01/2023 |
| Recruitment end date | 30/09/2023 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
Canterbury
CT2 7NZ
United Kingdom
Sponsor information
University/education
The Registry
Canterbury
CT2 7NZ
England
United Kingdom
| Phone | +44 1227 824797 |
|---|---|
| researchculture@kent.ac.uk | |
| Website | http://www.kent.ac.uk/ |
"ROR" |
https://ror.org/00xkeyj56 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 01/06/2025 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | The main output of this work will be a publicly available Easy Read version of the ASCOT for use with older people using social care. 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. |
| IPD sharing plan | The datasets generated and/or analysed during the current study are not expected to be made available due to the fact they are qualitative data and will be difficult to fully anonymise. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Protocol file | version 1.1 | 23/11/2022 | 16/12/2022 | No | No |
| HRA research summary | 26/07/2023 | No | No | ||
| Results article | 26/09/2024 | 27/01/2025 | Yes | No |
Additional files
Editorial Notes
28/01/2025: Study website added.
27/01/2025: A.Towers@kent.ac.uk added pub.
20/11/2023: The sponsor contact email has been changed.
18/09/2023: Total final enrolment added.
16/12/2022: Trial's existence confirmed by Coventry and Warwick Research Ethics Committee
