We thank the patients and FCGs for their generosity in taking part in the study during a very difficult period in their lives, especially when their time was so precious. Without their contributions, this study would not have been possible. We also want to thank those members of the public and of community and faith organisations who participated in workshops or completed workbooks.
We acknowledge with thanks the input of the health professionals who took part as interviewees, those in organisations in Leicestershire and Nottinghamshire who recruited patients and FCGs, and those who took part in workshops to share their views.
Throughout the study, we have benefited from the invaluable support, wisdom and involvement of members of the public, carers and bereaved relatives PPI group. The members have been involved in the project from the outset, commenting on the study design, ethics and participant materials, including those for the workshop. They have also contributed to the interpretation of the data and the development of the narrative outputs.
We are grateful for the substantial and creative input of Irfhan Mururajani, who is a co-applicant on the grant and has worked on all aspects of the study as an integral member of the project team, and has been instrumental in the sharing of findings and building further dialogue with diverse ethnic communities. We are also grateful to our CNLWs for their support in disseminating the findings to local communities.
We are grateful for the support of the members of the Study Steering Committee, especially the chairperson Dr Jonathan Koffman. We have also benefited from the support of the study advisors and want to express our thanks to them all.
The audio-recorded stories were written and produced by Andy Barrett for Excavate (Nottingham, UK; www.excavate.org.uk). They were read by Sokari Erekosima, Jim Findley, Gurpreet Grewal-Santini, Violet Hais, Mufaro Makubika, Irfhan Ali Mururajani, Dipti Patel and Ling Peng. We are grateful for the collaboration with Andy and we would like to applaud and thank the readers of the stories.
The work would not have been possible without the research team at LOROS Hospice; we would like to thank Emma Bowler, Wendy Gamble, Natalie Ayton, Caroline Cupit and Penny Smith for their hard work. We would also like to thank co-applicants Alison Pilsworth and Simon Royal for their expertise and input. We would also like to acknowledge the board of trustees, the senior management team and the many departments in LOROS Hospice that have given enthusiastic support to the delivery of this huge endeavour.
Governance and approvals
The University Hospitals of Leicester NHS Trust was the study sponsor (reference number: IRAS 251664 Edge111248). NHS Research Ethics Committee approval was obtained in December 2018 (reference number: 18/WM/0310), with two subsequent substantial amendments (May 2019 and March 2020). Health Research Authority approval was obtained on 4 December 2018.
Contributions of authors
Zoebia Islam (https://orcid.org/0000-0001-9274-694X) (Senior Research Fellow) was responsible for study conception, project management, design, data collection, analysis and writing of the final report.
Kristian Pollock (https://orcid.org/0000-0002-6836-8595) (Professor of Medical Sociology) was responsible for study conception, design and delivery, data analysis and writing of the final report.
Anne Patterson (https://orcid.org/0000-0002-9105-9248) (Research Fellow) was responsible for data collection, analysis and writing of the final report.
Matilda Hanjari (https://orcid.org/0000-0003-0001-0797) (Research Associate) was responsible for community engagement, data collection, analysis and writing of the final report.
Louise Wallace (https://orcid.org/0000-0003-3770-0580) (Professor of Psychology and Health) was responsible for project oversight and advisory support, data analysis and writing of the final report.
Irfhan Mururajani (https://orcid.org/0000-0002-2624-9301) (PPI representative) was responsible for project oversight and advisory support, data analysis and dissemination, and writing of the final report.
Simon Conroy (https://orcid.org/0000-0002-4306-6064) (Professor of Primary Health Care, Faculty of Medicine and Health Sciences, University of Nottingham; Professor of Geriatric Medicine, University of Leicester) was responsible for project oversight, clinical expertise and advisory support, facilitation of recruitment and liaison with health professionals and services, and reviews of the findings and of the final report.
Christina Faull (https://orcid.org/0000-0002-0064-8056) (Consultant in Palliative Medicine, LOROS Hospice, and University Hospitals, Leicester): Study conception, design, data collection, data analysis, clinical expertise and writing of final report.
Ethics statement
NHS Research Ethics Committee approval was obtained in December 2018 (reference number: 18/WM/0310) from West Midlands – Coventry and Warwickshire Research Ethics Committee.
Data-sharing statement
This is a qualitative study; therefore the data generated are not suitable for sharing beyond those contained in the report. Further information can be obtained from the corresponding author.
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.
