We thank our External Oversight Group for the incredibly stimulating and encouraging meetings: Jackie Askey (chairperson), Chris Roberts (activist and living with dementia), Jayne Goodrick (activist and carer), Lorraine Edmunds (Dementia Strategy, Welsh Government, UK), Alexandra Feast (University College London, UK), Paula Saukko (Loughborough University, UK), John Vorhaus (University College London), Laura Cole (King’s College London, UK) and Chris Chatterton (academic and activist).
We thank our Carers Steering Group; its involvement has been vital in both highlighting the acute setting as a key area of urgent need and in shaping our research agenda. The Carers Steering Group has continued to support us throughout our project, commenting on the appropriateness of our methods and discussing and debating our analysis and findings. We particularly thank Rosie Tope, Jackie Askey, Anne Davies, Peggy Martin, Viv Morgan, Julie Stacey, Betty Roderick, David Jones, Lynne Jeffrey, Chris Jones, Joan Gabe-Jenkin and all the members of the Carers Steering Group for all their support and for keeping us focused on our goal of this research. We also remember George Askey whose experiences continue to inform our work.
We are, of course, extremely grateful to all the PLWD, their families and carers, and the nurses, HCAs and medical teams who have shared their stories, supported our work and given us the encouragement to use our ethnography to improve care for PLWD, and to improve the working lives of nurses and HCAs working in the acute setting. We would like to acknowledge them all individually, but are required to preserve their anonymity.
Contributions of authors
Katie Featherstone (https://orcid.org/0000-0003-4999-8425) was principal investigator for this project, conducted data collection and analysis, was responsible for significant editing of this report and was a primary author of this report.
Andy Northcott (https://orcid.org/0000-0003-3030-9861) was research lead for this project, conducted data collection and analysis, was responsible for significant editing of this report and was a primary author of this report.
Paula Boddington (https://orcid.org/0000-0002-0859-3678) contributed significantly to data analysis and to the writing, editing and reviewing of the report.
Deborah Edwards (https://orcid.org/0000-0003-1885-9297) was responsible for the scoping and review, was responsible for significant editing of this report and was the primary author of the mixed-methods review and thematic synthesis (see Chapter 6).
Sofia Vougioukalou (https://orcid.org/0000-0003-0788-0373) provided patient and carer insight, contributed to the PPI events and was primary author of the PPI section of this report (see Chapter 9).
Sue Bale (https://orcid.org/0000-0001-5648-0072) provided nursing and clinical expertise throughout the analytic process and in the production of the report.
Karen Harrison Dening (https://orcid.org/0000-0001-7635-644X) provided patient and carer insight, and contributed to the PPI events and to the production of the PPI section of this report (see Chapter 9).
Karen Logan provided expertise in clinical continence care throughout the analytic process and production of the report.
Rosie Tope (https://orcid.org/0000-0003-4300-1532) provided nursing and clinical expertise throughout the analytic process and in the production of the report, gave patient and carer insight, and contributed to the PPI events and to the production of the PPI section of this report (see Chapter 9).
Daniel Kelly (https://orcid.org/0000-0002-1847-0655) provided nursing and clinical expertise throughout the analytic process and in the production of the report.
Aled Jones (https://orcid.org/0000-0002-2921-8236) provided nursing and clinical expertise throughout the analytic process and in the production of the report.
Jackie Askey provided patient and carer insight, and contributed to the PPI events and to the production of the PPI section of this report (see Chapter 9).
Jane Harden (https://orcid.org/0000-0001-8158-6450) was responsible for the scoping and review, and provided nursing and clinical expertise throughout the analytic process and in the production of the report.
Data-sharing statement
This is a qualitative study and, therefore, the data generated is not suitable for sharing beyond that contained in the report. Further information can be obtained from the corresponding author.
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.