The Adult Social Care Survey (ASCS) and the Survey of Adult Carers in England (SACE) are surveys administered by local authorities in England, using guidance from NHS Digital. The surveys cover topics such as satisfaction with care, quality of life, and outcomes from receiving care and support. This research explored which groups are under-represented in those surveys and why, and how this can be addressed.
Read the project summary
Read the main report
Read the review of the survey methodologies
Read the literature review
Read the research materials used for the project
Our analysis showed that for both surveys there were some groups under-represented at both the point of issuing the sample and responding to the surveys. For the Adult Social Care Survey this included people with memory and cognition support needs, and those living in nursing settings. Those with mental health as their primary support reason, the youngest and the oldest service users and all ethnic minority groups were under-represented in response to this survey. Among carers the most under-represented group was younger adult carers.
The reasons for differences in representation include:
- issues with the information local authorities hold for some of these groups,
- challenges in gathering feedback when those who use services lack mental capacity,
- barriers to taking part in the surveys,
- adults who use services and carers not recognising the relevance of the surveys to them.
The research was carried out between May 2019 and October 2020 and involved several elements:
- Analysis of data from the ASCS and SACE.
- Review of the literature about survey developments and hard to reach groups.
- Methodological review of the ASCS and SACE guidance and methodology published by NHS Digital.
- Consultation with local authorities responsible for running the ASCS and SACE.
- Consultation with stakeholders who use the data or have experience in research with service users and carers.
- In depth telephone interviews with service users and carers to explore their experiences of the surveys and barriers to participation.
This study is funded by the National Institute for Health Research (NIHR) Policy Research Programme (PRP) under project NIHR200692. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.