The PALLUP Study: Improving home-based palliative care for older people
Start date
September 2019End date
January 2025Overview
The number of older people living and dying with advancing frailty is increasing worldwide. Older people living with frailty need co-ordinated, innovative approaches, and integrated services, including palliative care, to support them to live well until they die. For older people with frailty the degree of clinical uncertainty, unpredictability and escalating care needs do not fit into traditional models of palliative care provision.
Therefore, while most older people living with frailty say they would prefer to prioritise quality of life over quantity, and care closer to home, they often experience multiple transitions from home to hospital in their last year of life. The PALLUP study builds evidence to support the shift to tailored community -centred care integrated care necessary to enable older to life the fullest life possible in their final years.
Aims
This study aims to:
- Understand the specific palliative care needs of older people living with advancing frailty
- Support families/those closest to the older person to work with palliative care services and reduce unnecessary intervention
- Equip community services to provide palliative care for older people living with advancing frailty, to ensure a consistently high-quality service.
Research questions
- What are the specific palliative care needs of community-dwelling older people living with advancing frailty as they approach the end-of-life?
- What are the key features and actions of community service delivery that better address palliative care needs of community-dwelling older people living with advancing frailty, and how might unpaid carers better access this care?
Research phases
- Phase 1. Defining and agreeing the core palliative care needs.
- Phase 2. Establishing current practice in extending community provision of palliative care for older people living with severe frailty
- Phase 3. Collecting both patient and family experiences and service response over a year
- Phase 4. Developing key features and resources to implement learning in practice
Patient and public involvement and co-production
Patient and public involvement (PPI) representatives on the study’s steering advisory group are providing ongoing input over the course of the study. On-going conversations with older people living with frailty and their families will shape all aspects of this research.
To ensure that we have meaningful and ongoing Patient and Public Involvement (PPI) over the course of the study, we have adopted a flexible approach to making arrangements that are best suited to older people’s needs and that provide appropriate resourcing will maximise involvement. The PALLUP Study has been adopted by Kent, Surrey and Sussex (KSS) Applied Research Collaboration (ARC) co-production theme to help us develop our knowledge and application of co-production in our research programme.
As part of this ongoing work we have created a repository to upload and download shared resources for people who are undertaking research and evidence-building using creative approaches with older people living with complex care needs. The repository can be accessed
Funder
The PALLUP Study trailer
Team
Study team
Professor Caroline Nicholson
Professor of Palliative Care and Ageing
Biography
Caroline is a Clinical Academic Nurse and her research forwards understanding and care for older people living with complex needs. She is particularly interested in the transitions that occurs in the last phase of life. Caroline qualified as a Registered Nurse at St Bartholomew’s Hospital London. She worked as a specialist Palliative Care Nurse before undertaking a combined BSc (Hons) in Community Nursing DN/HV Certs at King’s College London. She went on to an MSc in Medical Anthropology at Brunel University London before completing her PhD at City University, London in 2009. She is a FHEA from the Institute of Education and holds a diploma in psycho-dynamic approaches to old age from the Tavistock and Portman NHS Foundation Trust, London
Caroline is a HEE/NIHR Senior Clinical Academic Lecturer, working between the School of Health Sciences at Surrey University and St Christopher’s Hospice, London. She is passionate in her belief that everyone should have access to the best care and support in the final years of their life. She has a long-held interest in the experiences and palliative care needs of older people and their families and is co-lead in End of life Care for the British Geriatrics Society.
Caroline studies the experiences and care of older people living with complex needs across care settings, to develop interventions which equally value quality of life with quantity of years in old age. She has a long-held interest in the experience of older people living with frailty, and their capabilities as well as their current and future vulnerabilities. Her work also includes the development of care services and a workforce that can recognize, facilitate and enhance the processes and outcomes of high-quality palliative and supportive care. Caroline is committed to building the next generation of clinical academics and is an NIHR Nurse Training Advocate . Research expertise includes participatory action research, narrative research, mixed method research and complex intervention development.
Dr Sarah Combes
Research Fellow
Biography
Sarah Combes is a Research Fellow in Palliative Care and Ageing at the University of Surrey and a specialist palliative care nurse at St Christopher’s Hospice in South London. As a clinical academic, Sarah is working to support and develop a programme of clinically applied, translational research, that supports people as they near the end of life, their loved ones, and health and social care professionals. Her work centres around palliative and end of life care for older people living with advancing frailty and multiple morbidities, with a particular interest in decision-making, workforce development and service improvement.
Sarah is the Research Fellow on the PALLUP study which aims to improve home-based palliative care for older people living with advancing frailty by
- Understanding the palliative care needs of older people living with severe frailty;
- Supporting families to work with palliative care services and reduce unnecessary interventions; and
- Equipping community services to provide palliative care for older people living with severe frailty, to ensure a consistently high-quality service.
Previously Sarah was the Research Fellow for ALLIANCE, which sought to grow a partnership of care providers in the East Midlands, South East of England, and South West London, to build research capacity and agree research priorities focused on improving the coordination of end-of-life care for community-dwelling older people with advancing frailty.
Prior to moving to Surrey, Sarah's was awarded a prestigious HEE/NIHR Clinical Doctoral Research Fellow which she completed at King’s College London. Her PhD focused on developing a behaviour change intervention to support health and social care professionals to better instigate and support advance care planning with older people living with advancing frailty. Sarah is currently forwarding this work through her recently awarded KSS ARC Individual Development Award which seeks to co-produce resources with and for older people living with frailty and their informal carers to support advance care planning conversations.
Dr Richard Green
Surrey Future Fellow
Biography
Richard was awarded a prestigious Surrey Future Fellowship in April 2023 to work with interdisciplinary colleagues from the Surrey Institute for People-Centred AI and across the university to develop a programme of research on the use of 'carebots' (chatbots and other artificial technologies) to support the health and wellbeing of older adults. Prior to this role, Richard was working as a Research Fellow, project managing The PALLUP Study - Improving home based palliative care for frail elders and his current fellowship continues and extends his research on the health and wellbeing of older adults in later life.
Richard completed a BSc in Criminology and Sociology at Royal Holloway university and then an MSc in Social Research Methods at the University of Surrey, before completing his PhD in Sociology in partnership with both universities on an ESRC studentship. His PhD explored men's experiences following treatment for prostate cancer in a qualitative interviewing study. Before joining the PALLUP study, Richard worked at the Office for National Statistics as a Senior Research Officer, working on facilitating research access to secure data for research that serves the public good.
Research groups and centres
Our research is supported by research groups and centres of excellence.