Centre for Health Services Studies

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What are the features of Hospice at Home models that work, for whom, and under what circumstances?
Offering people a choice about where they receive their care at the end of life is central to UK policy and the numbers of people wishing to die at home is increasing. We also know from work undertaken with the general public that care at home is an important concern for many people. Much effort has been invested in health services to support care at home, including services called “Hospice at Home” (HAH) which aim to offer hospice care in the individual’s home.

The aim of hospice care is to improve the quality of life of people who have an incurable illness up to the point of death. This includes medical, emotional, social, practical, psychological, and spiritual care, as well as addressing the needs of the person’s family and carers. Currently a range of different HAH services exist in the UK and it is unclear which features of these services enable better care and outcomes at the end of life for patients and families. Professor Claire Butler based at CHSS is leading a national study to answer: What are the features of Hospice at Home models that work, for whom, and under what circumstances?

The project is led by the University of Kent in collaboration with the University of Cambridge, University of Surrey, Oxford University Hospitals NHS Foundation Trust, Pilgrim’s Hospice and the National Association for Hospice at Home. The project is spearheaded by a team of post-doctoral researchers based at the University of Kent and the University of Cambridge.

Start date: 01/02/2017 End date: 31/1/2020
Funding: National Institute for Health Research: Health Services and Delivery Research (project 14.197.44) £760,162

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More about this project:

1. Study Design

The study started with a national telephone survey of all HAH services to find out about the services they provide. We contacted hospice at home service managers identified through the Hospice UK and National Association of Hospice at Home directories to take part in a survey.

We asked the service managers to provide information on how they are funded, which health care professionals work for them and what kind of roles they have, and whether they provide care overnight and at weekends.

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We had a fantastic response to our phase 1 survey with 70 HAH services taking part (see map of survey responders left). The results of this survey helped us to understand the different types of HAH services running nationally and to select a number of HAH services as case study sites for in depth investigation in Phase 2 of the project.

A method called ‘realist evaluation’ is being used to gain an understanding of how the services delivered within the different models impact on patients and carers and whether they are supported and cared for as well as possible. We will also compare the costs of delivering services in the different models, and talk to providers of services about local issues that help or hinder the delivery of a good service.

The final phase of the project (Phase 3) will involve presentation of our initial findings and discussion with stakeholders in two workshops to validate interpretation of the data and to refine our understanding of what works, for whom, and under what circumstances.

These consensus events will help to develop our findings into guidelines for services and commissioners for developing HAH services matched to local needs.


2. How will we make sure the research is on the right track for patients and families?

We are aware that the project needs to be conducted sensitively and we are experienced in undertaking research with bereaved people. We are working closely with patients and members of the public to advise us on the most sensitive approaches. Our team includes two lay co-applicants who are members of the project team and involved in co-producing the research with us. Both have experienced bereavement as a carer and they have a key role in the team to ensure a thoughtful and ethically sound approach.

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One of our lay co-applicants recently presented with Charlotte Brigden (Pilgrims Hospice), at the RDS South East/INVOLVE UK event in London.  They showcased the OPEL H@H study as an example of public co-production in research.  You can find out more about this event here.

The project also benefits from input from independent experts and public members who sit on the Project Oversight Group for the study.  This group oversees the project progress and ensures the study delivers on its objectives, produce findings relevant to the public and national healthcare services.  It also ensures that the study has involved public and patient input throughout.

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Throughout the project we have been reviewing and documenting the PPI input in to the project and how this has changed the project and our approach over time. See a link to this overview below.

3. How will we make the research findings available?

Publication of the full and complete account of the research will be in the NIHR HS&DR Journal. This will allow the research to be freely and publically available via the NIHR journals library website. We will also publish our findings as they arise in peer reviewed journals such as BMJ, Social Science and Medicine and British Journal of General Practice to reach broad audience coverage in community services, and Health Services Journal to reach service commissioners. See below for links to what we have published so far.

We will present our findings through presentations or posters at existing research forums such as the European Association of Palliative Care Congress; Clinical Research Network forums; Cicely Saunders Institute, King’s College, London; Hospice UK annual conference; National Association for Hospice at Home (NAHH) conference. See posters we have already below.

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Guidelines will be developed for services to help plan HAH services in the future. We also aim to engage with commissioners through the links and influence of our commissioner co-applicant, Professor Bee Wee as National Clinical Director for End of Life Care for NHS England.

At the end of the project, a report and summaries for lay audiences will be produced. This will also be disseminated to our research participants. In addition, dissemination of findings aimed at the public will be facilitated through links with specific organisations including the National Council for Palliative Care, Hospice UK and the National Association for Hospice at Home (NAHH). These links with National organisations may also assist with bringing the results of the research to the attention of National Policy makers.

Case Study Site Newsletters:

Study Publications:

Posters, presentations and other publications:

The study data will also be available to researchers and the NHS on completion in line with national and international recommendations to benefit wider society. 

4. Consensus Events 2020

Dates

Leeds – 16 January 2020
Venue: The Met, King Street, Leeds, LS1 2HQ
London – 23 January 2020
Venue: Wellcome Collection Event Spaces, 183 Euston Road, London NW1 2BE

Our findings will be presented at two national workshops. At these workshops, we will seek feedback on the implications of our findings from the audiences including members of the public, carers, HAH providers, local health service planners. By combining all this information we will assess which models are likely to lead to the best outcomes and represent best value for money and create guidelines for planning HAH services in the future.

 

 

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Who is involved

 

Centre for Health Services Studies, University of Kent, Canterbury, Kent, CT2 7NF

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Last Updated: 31/05/2019