Title: The benefits and costs of domiciliary care
Funder: Department of Health and Social Care

Abstract: Background and research question Social care helps people with frailty, dementia and disability. Care options include domiciliary care, care home services, and housing with care. Domiciliary care in England is provided in care markets by mainly independent providers and personal assistants employed by clients, with public (local authority) and private funding. The sustainability and quality of this provision is variable. Research questions are: Which care options offer best cost-effectiveness? How does cost-effectiveness vary by the diverse needs in the population and different provider types? What drives provider sustainability, considering factors such as staff turnover rates, wages etc.? How much does price, quality and market dynamics vary across England? New research needs to address key issues including the diversity and complexity of domiciliary care and methods for estimating outcomes and causal effects; and do so in the context of relatively poor research resources. Aims and objectives This scoping study aims to develop a research protocol and preparatory work for research on the economics of domiciliary care. We will: Consult the social care community to inform research design, including understanding the potential impact and diversity of domiciliary care and care needs; Assess the existing research to inform the subsequent cost-effectiveness and delivery research about knowledge gaps and appropriate methods; Assess the suitability of available research resources, especially data; Consult with policy makers on the research questions and approaches for a main phase study; Produce and disseminate a research plan. Methods The main methods are consultation, scoping/review, data preparation and preliminary analysis, anticipating the research design challenges noted above (esp. outcomes and attribution issues). We propose: WP1 - Consultation activities, including workshops and project meetings, and through on-going engagement with sector stakeholders, researchers and policy colleagues. WP2 - Scoping literature review of cost-effectiveness evidence and methods. WP3 - Audit available data resources and materials, and undertake preliminary analysis of the suitability of existing data for cost-effectiveness research; and synthesise implications for research design from the consultation and review. WP4 - Develop a research plan and present on our recommendations. Significant PPI activity will underpin the WPs, overseen by our public PPI co-applicant. We will recruit ten lay research advisors to join the project team, attend project team meetings, and participate in project workshops. Timelines for delivery The project would last for nine months, with four project meetings (months 1, 4, 7, and 9; two of which with oversight from DHSC/NIHR and an external senior academic), two workshops (months 5 and 8), and a final output (month 9). Anticipated impact and dissemination The main output will be a comprehensive research protocol, with a version for peer-review journal submission and a summary version for wider dissemination. We plan presentations and sector consultation workshops. This study will help design and prepare the research, which in turn has potential impact, including: (a) for policy makers in setting care budgets and developing care policy guidance; (b) to inform practice, especially care commissioning by local authorities and individuals; and (c) to provide further resources for the research community.

Lay abstract: Background The social care system helps people with frailty (group of older people who are at highest risk of falls, admission to hospital, or the need for long-term care), dementia and disability. People can have care in their own homes (called domiciliary care) or move into a care home or supported housing. Domiciliary care in England is provided by 10,000 largely private and voluntary agencies, and 100,000 personal assistants, and is mainly secured by local authorities or families directly. At times, agencies go out of business or vary in quality and price. Different types of people have different care and wellbeing needs. There are many options: not all options are suitable for everyone, and not all offer the same value for money. Research about the benefits and costs of these options can help inform choice and improve quality. Aims Research of this type can be complex. Before one starts the research, one needs a plan about what needs looking at. The aim of this study is to develop that plan. We will: Ask for views of how domiciliary care should work, for whom and why; Consult with the sector for advice and guidance on the research questions and methods we propose to use; Find out what research has already been done; Learn from existing research about the costs and benefits of domiciliary care, about how care markets operate, and how they are evaluated. Use this to develop a plan. Delivering the research Key challenges for developing this research are: Identifying existing data on: the characteristics and needs of a diverse population receiving care, the cost of care delivery, and the outcomes. Producing measurements that: determine what people actually want from care, and ensure like-for-like comparisons between care options. We propose four activities: Run workshops to consult with the social care community, researchers, research funders and people with lived care experience. Review what has been already studied on the topic. Identify what data and other research materials already exist, and if it s suitable to use for this project, identify any gaps, and determine the best way of filling these gaps. Use all this to write a plan for further research, and discuss our findings with people involved. Public involvement First and foremost, care is for real people. It is important we know what matters to them. We will ask lay research advisors from a diverse background to join the project team. They will help us develop a plan for what should be researched and feedback on findings. A member of the public is a project co-applicant. She and others with lived experience helped shape the project application and will contribute actively throughout.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;8.2 HEALTH AND WELFARE ECONOMICS
Health categories: NEUROLOGICAL;GENERIC HEALTH RELEVANCE