Carer Research

Why carer support matters

Unpaid carers make up 9% of the UK population – according to Census 2021 data and Office for National Statistics census data for Scotland and Northern Ireland. This may be a considerable underestimate as results from other surveys estimate the figure as between 16% and 19%. Previous analysis by the Health Foundation (2023a) discusses the reasons for such variation, however we do know there are at least 5.7 million unpaid carers with possibly many more being currently unidentified.

Under-recording of carers means that local authorities cannot properly understand need in their area and target support to those who need it most. Without more complete data, GPs might not be able to provide proactive support to keep carers physically and mentally well. Nor can national policymakers reliably assess the degree of unmet need. This under-recording also raises many questions concerning how well integrated care bodies understand the health needs of their populations (Health Foundation, 2023b).

Carers play a vital role for the people they care for and in wider society by bridging gaps in state funded support, thereby reducing pressure on health and care services. Unpaid carers in England and Wales contribute a staggering £445 million to the economy every day – that’s £162 billion per year (Petrillo and Bennett, 2023).

Many carers derive pride and satisfaction from their roles, but caring also has both a personal and financial cost (Carers UK, 2022). In the latest state of caring report issued by Carers UK in 2023 it was noted that:

• 61% of carers said they needed more support to be able to look after their health and wellbeing.
• 44% of carers said they had put off health treatment because of their caring role.
• 50% of carers said they were receiving support with their caring roles from family and friends – a higher proportion than those receiving support from healthcare services (19%) and social care services (37%).

The Carers Trust is built on the foundations of all the individuals who make up 126 Network Partners and colleagues. With their continued commitment, they are able to keep supporting and making a difference to the lives of unpaid carers. In the current financial year (2024-25), one of their key focuses will be on developing a broader range of evidence-based and evidence-generating programmes which deliver for unpaid carers and local carer organisations (Carers Trust, 2023).

Carers Week 2024 – Putting Carers on the Map

Carers Week is an annual UK-wide awareness campaign seeking to increase visibility for carers. This year’s theme – Putting Carers on the Map (2024a) – included raising awareness about the challenges carers face which impact on their finances, employment, health and wellbeing and ensuring policymakers and politicians take steps to better support carers’ needs.

According to analysis of a YouGov Omnibus poll of nearly 6,500 members of the public published to mark the start of Carers Week 2024 (2024b), performing the role of a carer with little support can take a heavy toll. Survey participants noted that the impact of providing unpaid care was more negative than positive, with the biggest negative effect being on those current and former unpaid carers who said they had no choice about caring saying it had a ‘slightly or ‘very’ negative impact on:

• their mental health (70%)
• their physical health (60%)
• their job and ability to work (56%)
• their finances and savings (54%)
• their relationships (43%)

Looking to the future, 82% of carers surveyed by Carers UK (2024a) said the impact of caring on their physical and mental health would be a challenge over the coming year whilst nearly 60% added that being valued as a carer would improve their wellbeing.

Developing carer research capacity in Wessex

Our Role

One of the aims of the NCCDSW and NIHR ARC Wessex is to further develop research capacity in social care in Wessex. Building on insights gained from our recently launched pilot programme and continued refinement of this approach, we are looking to extend this approach to consider how unpaid carers could be better supported to engage in research development activities.

Through this process we will develop a strategy to ensure that carers regionally have the opportunity to be more meaningfully involved and embedded in future research activities.

Research in this area can help to highlight the role and burdens of unpaid carers and allow us to learn more about their experiences, their needs and how society must transform the support it provides to carers and to the local organisations that support them (NIHR, 2022).

Our Projects

In order to promote carer research engagement we are looking to:

• develop a primary research project focussed on carers
  • involving carers in the development and delivery of research
  • working with stakeholders – social care staff across the statutory, voluntary and private sectors
• conduct secondary research (e.g. investigate cultural and social barriers to, and opportunities for social care research with carers).

As our projects develop, you will be able to find out more about how they are progressing, so make sure to check back here regularly for updates.

Contact Us

Please do get in touch with members of the team (see below) if you would like to help us build carer research and engage carers in developing and undertaking research.

Working Carer Research

Background

In 2025 we completed a study exploring the experiences of working carers in the South of England – part of a larger research project funded by NIHR ARC Wessex exploring carers needs, experiences and ideas about improving carers involvement in research (Pulman and Fenge, 2025).

Findings

Our research highlighted the importance of developing more humanised ways of employers understanding a working carer’s needs and to meaningfully assist them in meeting their full potential within the workforce. Employers need to think and plan differently for people with unpaid caring responsibilities and realise that working carers need more:

• ENGAGEMENT from employers about how they can stay in work and be supported.
• EMPATHY from employers regarding their caring responsibilities and demands.
• EQUALITY from employers, showing respect and giving carers opportunities to thrive.

Further reading – journal articles:

Pulman, A. and Fenge, L.-A., 2025. Caring and working: developing insights into the world of the working carer. Health & Social Care in the Community .

Disseminating Working Carer Research Through Art

Background

In June, Professor Mel Hughes and Dr Gladys Yinusa invited expressions of interest from university researchers to work with local artists to produce a creative output which would help maximise the reach and impact of current research projects. The pilot project being a collaboration with BEAF Arts Co, an open-access, multi-art form festival and year-round arts programme based in Boscombe.

The pilot was developed to build connections with a local artist network who would be involved in selecting their preferred research project – matching the research team with a local artist and then providing funding to cover artist fees and materials. After successfully applying for funding for our research project, we were matched with artist Adilson Naueji to communicate findings.

Disseminating research can sometimes be incredibly dry as a subject, where important findings might be hidden digitally behind a journal firewall within reams of text and quotes, or worse, be highlighted in a staid or complex web of slides risking losing key research messages to (sometimes) disinterested attendees.

Art offers a tangible, visually impacting way of connecting an audience to a research message on a deeper level which is likely to stay longer in the memory. Mention of da Vinci’s Mona Lisa or Munch’s The Scream will immediately trigger a direct visual memory in a person in a way that text might not always be able to accomplish.

Looking at more innovative ways of cascading research messages via a long-standing medium like art seems like an incredibly simple and powerful step forward in increasing research impacts and prompting a discussion with an audience in retrospect. So if you are a post-doctoral researcher, seeking a new way of disseminating research evidence, what are you waiting for?

Further reading – blog posts:

6th October 25. CARING AND WORKING: Developing insights into the world of the working carer and disseminating through art. Part 1: Developing insights into the world of the working carer.

23rd October 25. CARING AND WORKING: Developing insights into the world of the working carer and disseminating through art. Part 2: Disseminating through art.

Related links
ARC Event 2025 – Special Newsletter
BEAF Arts Co

NIHR ARC Carer Research Projects

Like NIHR ARC Wessex, our colleagues in other NIHR ARCs around the country are also engaged in building carer research at the moment. You can find out more about what they are doing below:

ARC East of England – Carer Research Network (ACORN)

Useful Carer Research Information

NIHR Evidence: Supporting family and friends: how can research help carers?; October 2022; doi: 10.3310/nihrevidence_54306

This NIHR Collection highlights the perspectives carers can give to research. It includes tips for carers to get and stay involved in health and care research and also features tips for researchers involving unpaid carers in health and care research.

CAREN

Carer Research and Knowledge Exchange Network (CAREN) is a freely accessible knowledge exchange resource for all those across the globe who require any form of carer-related knowledge. Examples of stakeholders include governments, carers, employers, policy makers, practitioners, researchers, third sector organisations and research funders around the world. CAREN is based on a scoping review of carer-related research and knowledge funded by the NIHR School for Social care Research.

Carers UK – Policy and Research

Carers UK policy and campaigning work is grounded in the reality of carers’ experiences, backed up with vital evidence through their research.

Page References

Carers Trust. 2023. Carers Trust – Impact Report 2023. 

Carers UK. 2022. State of Caring. A snapshot of unpaid care in the UK – November 2022.

Carers UK. 2023. State of Caring 2023. The impact of caring on: health – November 2023. 

Carers Week. 2024a. 

Carers Week. 2024b. Carers Week 2024 report launches. 

Health Foundation. 2023a. Understanding unpaid carers and their access to support. 

Health Foundation. 2023b. Can you tell we care? Identifying unpaid carers using local authority and GP records.

Petrillo, M., & Bennett, M. 2023. Valuing Carers 2021: England and Wales. Carers UK/Centre For Care.