Sincere thanks and appreciation go to the following people and organisations. First, patients and their informal carers who gave generously of their time and commitment during a critical phase of their lives. Not many years ago, it was believed to be unacceptable to approach dying patients to participate in research. Fortunately, the case has now been made for pursuing such research so that, in death and dying, people can expect the same levels of evidence-based, excellent care as with any other element of health or social care. This succeeds because of the generosity of spirit of people who participate in research, often aware that their own experience of care may not be altered, for the future and greater good.
Patient and public involvement has been a major feature of this study and has made significant contributions to our understanding of the topic. This includes our inspiring and committed co-applicants, Graham Silsbury and Mary Goodwin; other patient, carer, volunteer and public representatives from Pilgrims Hospices in East Kent; public attendees of our consensus workshops; and the PPI representatives (Helen Teresa Edwards and Alan West) on our Project Oversight Group.
Members of the Project Oversight Group, chaired by Professor Fliss Murtagh, for their time given and their experience and wisdom, in support of the project. HAH organisations across England and their staff have given generously of their time and support for each phase of this project, in particular at the 12 case study sites. The NAHH whose board advised us and supported the involvement and recruitment of HAH organisations and provided us with the invaluable Kay Greene as a co-applicant on the study. Dr Ferhana Hashem who worked hard on the project in the first 18 months, before she was promoted on to new responsibilities. Mrs Cathy Hayes who brought her passion for palliative care and her clinical experience to the survey data collection and assisted with interview coding.
Project Oversight Group members
- Professor Fliss Murtagh (Professor of Palliative Care, Hull York Medical School, Centre for Health and Population Studies, University of Hull) chaired the group.
- Dr Catherine Evans (Health Education England/NIHR Senior Clinical Lecturer in Palliative Care and Nursing, Research, Development and Innovation Director, and Honorary Nurse Consultant, Sussex Community NHS Foundation Trust and Cicely Saunders Institute).
- Dr Anna-Marie Jones (NIHR Research Design Service South East Research Adviser, Statistician, University of Brighton) was the statistics expert.
- Professor Catherine Walshe (Director at International Observatory on End of Life Care, Lancaster University).
- Ms Lisa Irvine (Senior Research Fellow at the Centre for Research in Public Health and Community Care, University of Hertfordshire) was the health economist.
- Professor Patricia Wilson (Professor of Primary Care, Centre for Health Services Studies, University of Kent) was the realist evaluation expert.
- Professor Claire Butler (Clinical Professor of Palliative Medicine, Centre for Health Services Studies, University of Kent) was the chief investigator of the study.
- Mr Alan West was a public member of the Project Oversight Group.
- Ms Helen Teresa Edwards was a public member of the Project Oversight Group.
Contributions of authors
Claire Butler (https://orcid.org/0000-0001-9501-2861) (Project Chief Investigator, Clinical Professor of Palliative Medicine, Consultant in Palliative Medicine) wrote the introduction, conclusions and summary sections, and had overall responsibility for the content of the report.
Patricia Wilson (https://orcid.org/0000-0002-5787-9736) (Professor of Primary and Community Care) was the realist evaluation expert on the project, was responsible for the qualitative results chapter (Chapter 7) and provided expert advice for the discussion (Chapter 8). Patricia Wilson also mentored Claire Butler throughout the project and report writing.
Vanessa Abrahamson (https://orcid.org/0000-0002-1169-9457) (Research Associate) was responsible for the drafting of the discussion (Chapter 8), with supervision. Vanessa Abrahamson was also responsible for providing qualitative quotations for Chapter 7 and for site descriptions and flow diagrams in the appendices.
Rasa Mikelyte (https://orcid.org/0000-0002-2772-8240) (Research Associate) is a mixed-methods researcher; she was jointly responsible for writing Chapter 5 and providing qualitative quotations for Chapter 7 and site descriptions and flow diagrams in the appendices. Rasa Mikelyte acted as a key link between qualitative and quantitative data analyses. She was responsible for the formatting and presentation of the report.
Heather Gage (https://orcid.org/0000-0002-2049-9406) (Professor of Health Economics) was the expert health economist, responsible for the health economics analysis and the writing of the quantitative and health economics elements of the methods, results (Chapter 6) and discussion sections.
Peter Williams (https://orcid.org/0000-0001-7885-0564) (Statistics Consultant) was responsible for quantitative data analysis for phases 1 and 2 of the study and relevant tables and figures.
Charlotte Brigden (https://orcid.org/0000-0003-4917-4338) (Hospice Research Facilitator) facilitated the PPI element of the study from the inception of the project proposal through to completion. She wrote the literature review (Chapter 2) and the PPI (Chapter 4) sections.
Brooke Swash (https://orcid.org/0000-0003-2457-954X) (Research Associate) was responsible for the first draft of the methods section (Chapter 3) and for site descriptions and flow diagrams in the appendices.
Melanie Rees-Roberts (https://orcid.org/0000-0002-7121-0414) (Project Manager) participated in the writing of the results of the survey data (Chapter 5). Melanie Rees-Roberts also provided documents for the appendices.
Graham Silsbury (PPI co-applicant) and Mary Goodwin (PPI co-applicant) commented on the final draft of the report.
Kay Greene (Director of Clinical Services at Mary Ann Evans Hospice and Vice-Chair for NAHH), Bee Wee (https://orcid.org/0000-0002-7714-0349) (National Clinical Director for End of Life Care) and Stephen Barclay (https://orcid.org/0000-0002-4505-7743) (University Senior Lecturer, GP and Honorary Consultant Physician in Palliative Care) were study co-applicants and commented on the final draft of the report.
Publications
Butler C, Brigden C, Gage H, Williams P, Holdsworth L, Greene K, et al. Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation. BMJ Open 2018;8:e021192.
Hashem F, Brigden C, Wilson P, Butler C. 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. Palliat Med 2020;34:16–31.
Rees-Roberts M, Williams P, Hashem F, Brigden C, Greene K, Gage H, et al. Hospice at home services in England: a national survey. BMJ Support Palliat Care 2021;11:454–60.
Data-sharing statement
All data requests should be submitted to the corresponding author. Access to data will be granted where possible in line with the principle of open access, but provided that anonymity can be preserved.
Patient data
This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. Everyone should be able to find out about how patient data are used. #datasaveslives You can find out more about the background to this citation here: https://understandingpatientdata.org.uk/data-citation.
Disclaimers
This report presents independent research funded by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care.