Thank you for your interest in our research on former carers. Former carers comprise a relatively large group of people in the UK but their voices are not often heard or listened to. By former carers we mean, men and woman who have looked after a spouse, relative, friend or neighbour and who received no payment or wage for the care they provided. Our research study has been designed to gather the views and experiences of former carers in the UK.

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Tell me more about the study

The Former Carers Study will explore the experiences of people who were previously unpaid carers but for whom caregiving has come to an end. Unpaid carers provide the majority of care for people living in the community.

Current estimates from the 2011 Census put the number of carers in the UK at 6.5 million. However, this population is constantly changing with 30% to 40% unpaid carers starting to provide care each year and a similar proportion stopping. These figures suggest that the population of former or ex-carers is increasing in size and will continue to do so as numbers of carers are projected to rise in the UK due to an increasing ageing population and a reduction in the availability of formal service provision.

There is very little information or literature exploring the experiences of former carers. They are almost completely overlooked by government policy, which tends to focus on providing support to those who are currently providing care.

Research has suggested that providing unpaid care for has negative long term effects on people lives and is detrimental to their health and wellbeing; that when caregiving ends, carers have no purpose to their lives and poor health means they are unlikely to re-enter the workplace. Not everyone however, agrees with this claiming instead, that far from leaving carers with no purpose, caregiving has enabled them to develop new skills and attributes which they can use in other situations. In other words, the end of caregiving may offer former carers the opportunity to explore new horizons and opportunities. So former or ex-carers are potentially, a valuable and underused resource.

Why is the study important?

Taking part in the Former Carers Study is a unique opportunity to be a part of a large nationwide survey. It is a comprehensive and detailed study focusing on the experiences of men and women who once provided unpaid care for a spouse, child, relative, friend or neighbour but that has now come to an end.

The study is important because it includes carers from different areas of the country, diverse cultures and backgrounds, and varied family types and traditions. This will allow researchers to focus on issues that are important to the diverse UK carer population.

The study will explore the how former carers, some who may have provided care for many years, adjust to a change in their status and identity. It will look at how people cope with this transition and how it easy it for them to pick up the threads of their life and explore new opportunities.
Some people have described caring as having been an isolating and traumatic experience and one which they have not been able to recover from. We want to know how caring has changed people's lives and whether the impact of caregiving has long lasting effects on their identity, sense of self, career and other relationships.

The aim of the study is to provide a picture of what it means to be a former carer in the twenty first century. Using a combination of individual interviews and quantitative data we will explore the experiences of former carers to improve our understanding of this transition in carers' lives and ultimately, to improve the quality of support and services available so former carers can lead meaningful and satisfying lives.

The study will explore the experiences of carers who looked after people with a number of conditions such as, but not limited to, old age, dementia, learning disability, mental illness, terminal illness, and other long term conditions. By exploring former carers' experiences, the study hopes to determine what helps carers negotiate the transition from carer to ex-carer and to better explain how social resources can best be utilised.

Ex-carers can have a major impact on the development of services for future caregivers by taking part in the Former Carers study.

We will periodically provide news and updates regarding the study on the website.

Who can take part in the study?

Male or female former and unpaid carers of any age for whom caregiving came to an end between 6 months and 5 years ago. This is because we don't want to upset recently bereaved carers but nor do we want participants whose experience was so long in the past that they not be able to remember clearly how they felt at the time.

Former carers from any ethnic background who feel comfortable with reading and understanding written English as the survey questionnaire are not available in alternative languages.

Former carers from any area in the UK, including England, Wales, Scotland and Ireland.

You can take part in this study by completing the online survey questionnaire available here

Information about the researchers

This study is being conducted by researchers from the Faculty of Health and Social Care at The Open University.

Dr Joyce Cavaye

Joyce Cavaye is a senior lecturer who joined the Faculty of Health and Social Care at the Open University in 2003. This role follows a long first career in community nursing and then lecturer in the Department of Social Policy and Social Work at the University of Glasgow. She is based at the Open University's administrative headquarters in Edinburgh. Her role as a regional academic involves the management of associate lecturers teaching on health and social care courses in Scotland, quality assurance of the curriculum and engagement with key stakeholders in health and social care education and policy.

Joyce's teaching and research interests are in the areas of informal caregiving, ageing, health, death and dying and the use and efficacy of alternative medicine. She supervises PhD students working in the areas of family caregiving and health. She is a member of the Open University's Centre for Ageing and Biographical Studies (CABS) and is also a member of the British Sociological Association and the British Society of Gerontologists.

Joyce is commissioning editor for the book series 'Policy and Practice in Health and Social Care' published by Dunedin Academic Press and sits on the editorial board for Medical Sociology Online (MSO), an open access journal from the British Sociological Association (BSA).

Dr Jackie Watts

Dr Jackie Watts is Senior Lecturer in the Faculty of Health and Social Care having joined the Open University in April 2004. Jacqueline's main teaching and research interests are in the areas of death and dying, older people and later life and the sociology of work, particularly women's experience of the labour market. The culture of organisations and management are associated interests, with gender as an overarching focus.

Jackie is external examiner at the University of the West of Scotland where she examines the MSc Cancer and Palliative Care curriculum and for the Faculty of Education, Health & Sciences at the University of Derby. She is also a Visiting Lecturer at the University of Stirling where she teaches on the social work programme.

Jackie is the Editor-in-Chief of the BSA publication Medical Sociology Online and board member of the US-based journal Illness, Crisis & Loss.
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© 2014 Joyce Cavaye & Jackie Watts