Carer Research
NCCDSW is helping to assist in building regional carer research – for both adult and young carers – engaging carers in developing and undertaking research and also informing the development of social care research within the ARC Wessex region.
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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.
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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.
- develop a primary research project focussed on carers
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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:
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Useful Carer Research Information
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.
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.
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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. 2024b. Carers Week 2024 report launches.
Health Foundation. 2023a. Understanding unpaid carers and their access to support.
Petrillo, M., & Bennett, M. 2023. Valuing Carers 2021: England and Wales. Carers UK/Centre For Care.