Melanie Rees-Roberts, M.Rees-Roberts@kent.ac.uk
01/02/2017 - 22/03/2021
Optimum Hospice at Home services for end of life care
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.
National Institute for Health Research: Health Services and Delivery Research (project 14.197.44) £760,162
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.
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.
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.
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.
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.
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.
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.
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. The draft report was submitted to NIHR on 22/3/21 and we expect it to be publicly available in early 2022. 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.
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.
What research outputs planned/published?
Case Study Site Newsletters:
Hashem, F., Brigden, C., Wilson, P. and Butler, C. (2020) “Understanding what works, why and in what circumstances in Hospice at Home Services for End of Life Care: applying a realist logic of analysis to a systematically searched literature review”, Palliative Medicine. Sage, pp. 16-31. doi: 10.1177/0269216319867424. Abstract | View in KAR
Rees-Roberts, M., Williams, P., Hashem, F., Brigden, C., Greene, K., Gage, H., Goodwin, M., Silsbury, G., Wee, B., Barclay, S., Wilson, P. and Butler, C. (2019) “Hospice at Home services in England: a national survey”, BMJ Supportive and Palliative Care. BMJ Publishing Group, pp. 1-7. doi: 10.1136/bmjspcare-2019-001818. Abstract | View in KAR
Butler, C., Brigden, C., Gage, H., Williams, P., Holdsworth, L., Greene, K., Wee, W., Barclay, S. and Wilson, P. (2018) “Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation”, BMJ Open. BMJ. doi: 10.1136/bmjopen-2017-021192. Abstract | View in KAR
Selected Conferences, posters and presentations:
Abrahamson V, Butler C, Wilson P, Mikelyte R, Brigden C, Silsbury G, Goodwin M. 2021 International Conference for Realist Research, Evaluation and Synthesis. Feb 2021. Optimum Hospice at Home Services for End-of-Life care: realist evaluation and co-production. https://www.youtube.com/watch?v=fQX6-ka1VwU&feature=youtu.be
Brigden C, Goodwin, M, Silsbury, G, Rees-Roberts M, Butler C, Greene K, Hayes C, Hashem F, Gage H, Williams P, Wee B, Barclay S, Wilson P, Mikelyte, R. Oct 2018. National Association for Hospice at home Annual Conference 2018. Patient and public involvement in hospice research: an example of co-production in action.
Brigden C and Silsbury G, July 2018 NIHR Research Design Service South East / INVOLVE. Co-production in the OPEL Hospice at Home Study
Slides from RDS/INVOLVE UK co-production event – OPEL study project presentation
Rees-Roberts M, Mikelyte R, Hayes C, Hashem F, Brigden C, Gage H, Williams P, Greene K, Wee B, Barclay S, Wilson P, Butler C. 2017. National Association for Hospice at Home annual conference 2017. Poster & presentation.
Phase 1 poster
Phase 1 findings A4 summary
Consensus Events 2020:
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 2B
Our findings were presented at two national workshops. At these workshops, we sought feedback on the implications of our findings from the audiences including members of the public, carers, HAH providers and health service commissioners. We combined all this information to assess which models of service provision are likely to lead to the best outcomes, represent best value for money and create guidelines for planning HAH services in the future. A summary of the consensus events can be found in the Phase 3 summary (pdf).
Who is involved
- Professor Claire Butler, CHSS
- Professor Tricia Wilson, CHSS
- Charlotte Brigden, CHSS
- Ferhana Hashem, CHSS
- Dr Vanessa Abrahamson, CHSS
- Dr Rasa Mikelyte, CHSS