New research project to give voice to 800,000 unpaid carers in Scotland

A new pan-Scotland research project raises the awareness of the real-life challenges and uncertainties faced by unpaid carers.

Scotland Cares, a collaborative project across research institutions and the third sector, aims to promote the visibility of the vital role unpaid carers play. Researchers hope the project will give unpaid carers a voice, with the potential that their experiences could shape government policy at a time where Scotland continues to develop and consult on the ‘National Care Service’.

As the population ages and health and social care models evolve, understanding the role and experiences of unpaid carers has never been more important. To address this, the Scotland Cares project will collect snapshots of lived experience from unpaid carers from around Scotland, before engaging with a range of storytelling techniques to bring to life the achievements, hopes and challenges of carers in an impactful way.

Funded by The Royal Society of Edinburgh Young Academy of Scotland (YAS), Scotland Cares is a collaboration between the University of Glasgow, the University of Strathclyde, Edinburgh Napier University, the University of the West of Scotland, Carers Scotland and the Health and Social Care Alliance Scotland (the ALLIANCE).

In Scotland an estimated 800,000 unpaid carers – a diverse group who include family, friends and neighbours – are looking after an individual living with a mental or physical illness, disability or frailty. Those unpaid carers will themselves face a number of challenges because of their role, including stress, loneliness, overwhelm, declining personal health and uncertainty. Indeed, statistics collected by Carers UK estimate that 72% of those who care report suffering poor mental health and 61% suffering physical ill health due to their caring role.

The Scotland Cares project is formed of two parts, the first involving a survey of unpaid carers around Scotland, asking them for their honest experiences, challenges and hopes for the future. The second part focuses on engaging with experts in storytelling to bring to life the achievements, hopes and challenges of carers in a relatable and dynamic way. Researchers plan to collate unpaid carers’ stories in a range of forms, including online and in-person exhibitions, and a booklet.

The project team is optimistic that this work will act as a catalyst to raise the current voice of carers, as well as forming an interactive narrative that can drive positive change through shaping public policy.

Dr Josie Fullerton, Scotland Cares project lead for the University of Glasgow, said: “While caring represents some of the most remarkable elements of the human spirit – the innate compulsion to look after others – it is also synonymous for many with a wide array of challenges such as stress, uncertainty and a loss of identity. In addition, it now seems certain that, as our society continues to age and our healthcare models continue to move health out of hospitals and into the community, those who care for others will take on a greater breadth and depth of roles in delivering care in the years ahead.

“That is why is it vital that we hear directly from unpaid carers, about their experiences and challenges. The Scotland Cares project will enable us to do that, amplifying the voices of unpaid carers so that we can better inform public health policy for the benefit of all.”

Kieren Egan, Scotland Cares project creator, from the University of Strathclyde, said: “This project is important and timely for a number of reasons. It gives us a chance to hear directly from informal carers all across Scotland while we’re talking about how to design our future national care service.

“It’s crucial that we continue to shine a light on the role of informal carers and celebrate their efforts. Plus, it brings together researchers from different places and fields to work together in a welcoming and creative space. We hope that by working together, we can help make carers’ voices louder and share some important messages on their achievements and hopes as we look to the future.”

For more information, if you would like to be involved in the project, or if you have a caring story to tell please contact carers-research-project@strath.ac.uk

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