CARERS IN THE 21ST CENTURY: DEVELOPING THE EVIDENCE BASE

This innovative and original seminar series will contribute to improved quality of life and health and wellbeing for those in our society who give so much to those who need care and without whom, the delivery of health and social care might not be sustained. This group of people are CARERS.

The body of research about carers and caring issues that has burgeoned since the emergence of the concept of the 'carer' in the 1980s has played a key role in the growing awareness of carers' needs and contributed to policy initiatives developed to improve their quality of life and health and wellbeing and that of those they support. However, carers face new challenges in the 21st century which have yet to be addressed. Examples of these are changes in carers' profiles, changing demographics and changing family structures resulting in multiple/inter-generational caring as well as the increasing timescale of caring because of medical advances. In addition, policy initiatives such as personalisation and those which mean carers have responsibility for managing a greater range of health conditions at home will impact significantly on the experience of caring. Such changes and policies will reshape the nature of the 'care' that carers will have to deliver.

In order to ensure that the improvements to carers quality of life and health and wellbeing continue at this point in time there is a need for a better understanding of these challenges for carers and a coherent evidence base about policy, services and interventions within health and social care that can improve carers quality of life and those they support. The proposed seminar series has been developed by a team of multi institutional researchers and research participants engaged in carers research through a process of extensive consultation with key stakeholders. These stakeholders include service users, carers, leading academic researchers, and representatives from the third sector, local authorities, the Department of Health and the Standing Commission on Carers. It aims to provide a forum for around 30 participants in which the gaps in existing knowledge can be rigorously evaluated, and both the future agenda for carers research and the modus operandi required for its success and lasting impact can be established. Although the focus will mainly be on the UK, the seminars will include international contributors in order to maximise the opportunity provided by the seminar series to gain new perspectives and understandings about carers and caring issues within this country.

There will be four seminars in key locations with the following themes: Carers and policy in the 21st Century, Policy in practice, Recognising different needs and Effective support for carers. Presenters have been secured, session titles agreed and a draft programme has been put together. Those who have agreed to contribute are drawn from a wide range of backgrounds and disciplines; they include leading academic researchers, early career researchers, carers, service users, voluntary organisations, representatives from government departments such as the Department of Health and Department for Work and Pensions, and postgraduate students. Contributors will also co-present with carers and PhD students who have participated in their research.

The creative approach embodied in this proposal to securing positive outcomes for those who will have to deal with the demands of caring in the 21st century has been widely endorsed. The establishment of a 'carers research network' in particular has been commended as timely in progressing the carers research agenda. Furthermore, this seminar series is aligned with current and future policy trends such as the Quality, Innovation, Productivity and Prevention agenda (QIPP), the Carers Strategy (Department of Health, 2010), the Dilnot Commission Report (Commission on Funding of Care and Support, 2011) and NICE (2011) guidelines on patient & public involvement.

The primary beneficiaries of this seminar series are CARERS - a group of people in our society who give so much to those who need care and arguably, without whom the delivery of social care might not be sustained. Furthermore as it is estimated they save the UK £119 billion a year (Buckner and Yeandle, 2011), carers also make a significant contribution to our economy. Carer research that has been carried out to date has played a key role in empowering carers, increasing awareness of their needs and driving improvements in their quality of life and health and wellbeing (see 'Case for Support'). This seminar series aims to contribute to the development of an evidence base which can be used to progress these improvements for carers in the 21st century. For example, it should help to ensure that they are adequately equipped to cope with the changing demands of caring, have the opportunity to fulfill their personal, educational and employment goals and are supported to remain mentally and physically well. Moreover, such improvements will simultaneously benefit those who carers support.
The realisation of these benefits means that there also needs to be a wide range of other beneficiaries. The main ones are listed below, together with the benefits that are specific to each group. Contributions to the seminars from leading figures in carer research have been secured. In addition, the seminars will bring together many of the currently disparate key stakeholders in the field of caring for the first time. Hence, all of the beneficiaries will benefit from the new forum for knowledge exchange, networking and collaboration. Other mutually beneficial outcomes will be an increased critical awareness of contemporary and future issues for carers as well as relevant policy and health and social care interventions. As the planned carers research network will sustain the dynamism of the seminars, such benefits will be ongoing.
- the innovative and unique nature of this seminar series means that it will provide new opportunities for ESTABLISHED AND EARLY CAREER RESEARCHERS ACROSS A RANGE OF DISCIPLINES ENGAGED IN CARERS RESEARCHERS IN UK HEIs to develop their research potential. In addition to the above benefits, they will be able to develop their understanding of theoretical, conceptual and methodological issues relevant to the emerging carers research agenda and use the carers research network to enhance their profiles. Through its impact activities (see Pathways to Impact), this seminar series will not only facilitate future national and international research collaborations for participants but also contribute to the national and international promotion of, and investment in, carer research
- the information made available as a result of the seminars and the carers research network will be advantageous to HEALTH AND SOCIAL CARE VOLUNTARY ORGANISATIONS. For example, in both the immediate and longer term it will inform their research and campaigning for improved service provision, quality of life and health and wellbeing for carers and those they support. The carers research network will be invaluable to carers organisations in particular in taking the carers research agenda forward
- the social and economic contributions carers make to our society will reduce if services and interventions do not meet their needs. Not only are carers central to existing health and social care policies but they will also play a key role in the delivery of the emerging health and social care policy agendas. Thus, the seminar series will be useful to GOVERNMENT REPRESENTATIVES as it will provide them with a comprehensive overview of current and future issues for carers and carer policy which they can use to ensure that future health and social care initiatives are cost-effective. In addition, they will be able to contribute to the future carer research agenda and use the evidence base it develops for policy making at local, regional and national level.