Researching unpaid carers in adult social care: how can we overcome the limitations?

Having access to data on adult social care is key for researchers, academics, and policy-makers who require sufficient evidence on which to make informed decisions. The introduction of a new £86k cap on an individual’s spend on social care, along with the new health and social care levy, has made the topic especially pertinent. We must be able to measure the impact of the new measures if government is to make effective policy decisions about the allocation of resources.

Finding robust information about adult social care in the UK has a number of challenges, however – and unpaid carers are no exception. The first challenge derives from the devolved nature of adult social care, which means that data from across the UK isn’t always directly comparable. While England and Wales shared a census in 2021, Scotland and Northern Ireland carried out separate censuses, in which the questions on unpaid care were differently worded. Scotland didn’t carry out its census until 2022, therefore we also need to consider the differences in timing of data collection in any data analysis.

There is also a difficulty in defining unpaid care. Not everybody who carries out unpaid care thinks of themselves as being an unpaid carer: someone who provides meals for an elderly parent once or twice a week, for example, might not think of themselves as an unpaid carer, even though they would be defined as one by the GSS harmonised definition of unpaid care used in the England and Wales 2021 Census.

Data relating to social care has not been collected and measured as closely as health care data. The adult social care landscape in the UK is highly fragmented, involving central and local government, the third sector, and the private sector. Even within each home nation, there are differences in how individual local authorities collect data about adult social care, and how providers choose to present that data.

Harmonising adult social care data

In 2020, the Office for Statistics Regulation published papers highlighting the main gaps in social care data, including the burden placed on unpaid carers. At the ONS we are working to find ways of filling those gaps.

We are trying to harmonise the adult social care data as much as possible, so we now have a four nations group on adult social care, which brings together the ONS, the Department of Health and Social Care, the Welsh government, the Scottish government, the Department of Health in Northern Ireland and NHS Digital.

This group has collaborated to produce the adult social care landscape, an interactive tool that compiles official statistics relating to adult social care across England, Scotland, Wales and Northern Ireland. Each month we update this with new publications. The tool enables users to find links to all official social care statistics in a single place, which they can then search by theme, keyword, or country.

Another output from the group is a four nations matrix that addresses the complexity of comparing adult social care statistics across the UK. The matrix covers a variety of different care topics that users most frequently request, such as the number of hours spent caring, carers’ assessment and support, workforce, and the number of service users. It also includes information relating to Covid-19, such as vaccination and mortality rates. The matrix pulls together all these topics and provides links to the relevant publications and datasets.

Within ONS, we also have a Government Statistical Service (GSS) harmonisation team, which is working on aligning definitions more closely to help make data more comparable.

Improving the evidence base

As well as the England and Wales census, there are other sources of data on unpaid care we can draw on. These include surveys that we have carried out, such as the Opinions and Lifestyle Survey to understand the impacts of the coronavirus (COVID-19) pandemic on unpaid carers in Great Britain.

We are also working with academics to further improve the evidence base, including those at the University of Birmingham and at the University of Sheffield’s Centre for International Research on Care, Labour and Inequalities. By providing students with access to our data assets, we will help them to ask novel research questions and fill in gaps in knowledge about unpaid care.

Earlier in the year, we released our census analysis plans relating to unpaid care. The England and Wales census included a question about the number of hours of unpaid care people were providing. We will be able to use that data to understand the characteristics of the unpaid care population, geographic variation and the changing trends in the population over time.

Over the next three years, we will release a series of articles. In our first releases, we aim to understand more about the impact that being an unpaid carer has on an individual’s employment, their working patterns, and their general health. Further down the line, we want to link the census data to other data assets we have available to provide a richer picture. Despite the limitations and challenges, we believe our work will uncover valuable data that can inform adult social care policy, improving outcomes for both carers and the cared-for.