Introduction
This project focuses on understanding the risks and harms experienced by people who receive or provide home-based care, and is led by Chief Investigator, Professor Andrew Carson-Stevens. The study team includes members of the public with experience in home-based care, and colleagues with experience of social care, law and healthcare from Cardiff University, Swansea University and University College London.
Background
A society that is getting older, with more long-term health conditions means that more people need care. Pressure on the National Health Service and Social Care have led to more care being delivered in people’s own homes (home-based care). Home is an unregulated and uncontrolled place, where people who are able to understand the positives and negatives of home-based care and share their wishes (known as having capacity) are able to exercise their right to take risks. This can impact on their safety, but also on the role of unpaid carers (such as family members, for example), who often provide care without formal training, as well as paid homecare workers.
Activities undertaken by paid carers, largely working alone and without enough support, are becoming more complicated. Many people who receive home-based care (known as service users), families and care workers are worried about safety, risks, and benefits and harms in home-based care.
Although information about safety, risks and harms is collected, there is no effective way to regularly review and understand what has been reported, to identify where and how to make improvements with care. Also, there is no agreement on what ‘safe’ means or how conflicting priorities should be dealt with. Without this, it is difficult to know when care is unsafe and how this can be avoided, and those in charge do not know what the most common or serious problems are. Understanding these problems is important to improve care at home.
People should get safe care for all aspects of their care needs. We will help care designers, funders, policymakers, and those delivering services, to understand what can go wrong for whom, when and how, to reduce future risks.
Study methods and activities
The aim of this study is to understand the risks and harm experienced by people providing and receiving homecare and how they can be reduced. We will:
- Look at existing literature to understand how safety is understood in homecare.
- Review safety reports written by homecare workers in Wales to understand the most reported problems and why these have happened.
- Talk with care users and their families/ friends/others who support their care from across Wales, to understand their safety concerns.
- Speak to people responsible for homebased care (e.g., managers, policymakers, carers, inspectors in all four UK nations) to understand how harm occurs/is prevented, and how they balance the risk of harm with potential benefits, to deliver care that meets user needs.
Public Involvement activities
Three carers with family members needing homecare helped us to plan the study. As co-applicants, they are part of the study team and will attend our study meetings and guide us on key decisions such as recruiting participants from diverse communities, the questions we ask and how we share outcomes from the study with different groups (especially from underrepresented backgrounds).
Additional service users, unpaid and paid carers, and professional representatives from across Wales gave input to the planning of our study. They told us homecare workers do not need ‘more rules’ which they struggle to apply. Instead, they are seeking principles and the ability to make decisions which their employers (and official channels like regulators and inspectors) support so they can use these in the real-world to provide care that makes a difference for the people they care for. Many senior decision-makers from Wales and the devolved nations have agreed to attend our stakeholder dissemination events or independent steering group, and we aim to share our findings widely.
Research Leads:
Professor Andrew Carson-Stevens, Professor of Patient Safety, Cardiff University
CARE affiliation:
This project has been supported by CARE, and Health and Care Research Wales with recruitment and support for our three public co-applicants, and recruitment for our patient advisory group/public members for our study steering committee.
Research Members and collaborations:
- Dr Joy McFadzean, Clinical Lecturer of Patient Safety, Cardiff University
- Professor Paul Willis, School of Social Sciences, Cardiff University
- Dr Alison Tarrant, School of Law and Politics, Cardiff University
- Dr Matthew Smith, School of Pharmacy and Pharmaceutical Sciences, Cardiff University
- Miss Delyth Price, School of Medicine, Cardiff University
- Dr Aled Davies, School of Medicine, Cardiff University
- Dr Deborah Morgan, Swansea University
- Dr Maria Cheshire-Allen, Swansea University
- Dr Sarah Yardley, University College London
- Mr Rashmi Kumar, public co-applicant
- Ms Marie-Claire Hunter, public co-applicant
- Ms Sian Harding, public co-applicant
Funder(s):
NIHR HS&DR 23/90 Evaluating the organisation, delivery and quality of home care services
Funding amount:
£798,823
Project start date:
March 2025
Project end date:
February 2027
Findings:
Ongoing