BOUGH is an NIHR School for Social Care Research-funded study designed to understand the scope and nature of good quality home care for people with dementia, so that it can be more widely implemented.
The importance of home care can be described in a few key facts:
- Gross annual public expenditure alone on older people’s homecare in 2011-12 was an estimated £3.2 billion
- Most home care is provided by the independent sector (89% in 2012, compared to 5% in 1993) , and
- There are 6,830 home care organisations registered with the Care Quality Commission in England but many more – possibly one third, are not registered
- The home care workforce has grown to over half a million in England
What is "home care"
"Home care" refers to a range of care and support interventions delivered to people in their own home: domestic tasks, shopping, home maintenance, personal care, social activities, rehabilitation and recovery and support for people who are dying. It can be preventative,providing companionship, engagement or early intervention to avoid a deterioration in health and wellbeing. It can be used to delay or prevent the need for residential care, or following illness or injury.
It can be targeted at facilitating hospital discharge and it can offer palliative care at home to people during the last stage of their life. Both providers and commissioners recognise that as policy has moved more towards supporting older people in the community rather than in long-term care, home care has come to cover an increasingly wide range of functions.
The policy drive towards integrated health and social care makes it imperative for both sectors to understand more about the largely-hidden home care workforce and what they do, particularly in caring for people with dementia. These individuals experience increasing dependency,frequently lasting a decade or more. Dementia is therefore a case in point to illustrate the potential benefits of integration between health and social care and to explore the drawbacks or obstacles.
The purpose of this research is to understand the scope and nature of good quality home care for people with dementia so that it can be more widely implemented. The study will inform home care policy service development and workforce training by answering the following questions:
1. What do home carers do in practice for people with dementia?
One objective of this study is to describe the discrete tasks undertaken by home carers in dementia care. In addition to support with domestic tasks, home care can include rehabilitation, psychosocial therapeutic interventions and support for people who are dying.
2. What does it feel like to give – and to receive, home care?
The quality of the relationship that workers have with people with dementia and their families impacts directly on the quality of life of these individuals. A second objective of this study is to describe and understand the relational aspect of home care.
3. What key factors appear to influence home care quality?
The third justification for undertaking the research is to understand what ‘good’ looks like in home care, in order to raise standards and improve value for money.
The study will comprise five work packages:
1. Team participant observation
Two researchers will undertake participant observation by working as Care Givers. The clients involved will be self-funding.
2. Interviews with home care personnel
Researchers will carry out 1-1 interviews with home care personnel from each provider. The questions will be devised following the initial analyses of the fieldwork.
3. Interviews with service users
In a similar way, researchers will interview a sample of current clients and their relatives, and past users (relatives of deceased clients) from the host services, basing the questions on the initial fieldwork findings.
4. A diary study
A sample of home carers will be trained and supported to participate in the study by keeping diaries over a period of eight weeks. Voice recorders will be offered as an optional means to keep the diary.
5. Job analysis of the work of home carers nationwide
This will involve asking local authority Commissioners to take part in a short telephone interview and to provide examples of their contract specifications for home care. This work package is expected to generate a reasonably representative profile of home care standards and job profiles within which to locate and interpret the significance of the other findings from the study.
Use of your personal data in research
As a university we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.
If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).
Our Data Protection Officer may be contacted here:
- Dr Nicola Turner
- Dr Samantha Wilkinson, Manchester Metropolitan University
- Dr Lucy Perry-Young
- Dr Tony Kelly
- Professor Nick Manning, University College London
- Dr Kristian Pollock
- Dr Kezia Scales, University of North Carolina
- Professor Justine Schneider (PI)
- Dr Cheryl Travers, Loughborough University
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We saw care workers going above and beyond the call of duty
Winston’s World has been written as a resource for learning about home care and about dementia care in particular. It shows a world where people are trying hard to deliver good care, but where there is still room for improvement. Every scenario – in fact, each drawing, has been carefully developed to offer a focus for reflection and discussion.
Winston’s World is based on academic research into the experience of home care for people with dementia. We wanted to reflect the things we learned from this research so we got together and developed the characters you meet in this book. Daisy, Freda, Jim, Janet, Andrew, Brutus and Winston are all fictional, but the scenarios here are typical in many ways.
Download Winston's World
Spiral-bound hard copies (90 pages) may be purchased for £6 plus postage and packaging at the University of Nottingham online store.