What matters most? Supporting conversations on what matters most to older people in the last phase of life: A co-production approach
Start date
01 March 2025End date
30 April 2026Overview
Older people living with advancing frailty (OPLWAF) often face sudden changes in their health and may not always have the chance to discuss their preferences for future care. Advance Care Planning (ACP) helps ensure that people are more likely to receive care that reflects what matters most to them. However, many OPLWAF do not engage in these conversations due to a range of personal, social, and system‑level challenges.
This study aims to improve support for ACP, or conversations about what matters most, by refining and adapting the existing Conversations on Living and Dying (CLaD) intervention—originally developed with OPLWAF, unpaid carers, and specialist palliative care professionals—so that it can be effectively used in community settings.
Working closely with community professionals, older people, and unpaid carers, the research will update the CLaD intervention, test it in real‑world services in Guildford and Waverley, and gather feedback on its usefulness and acceptability.
Aims and objectives
To refine the original CLaD intervention and co-produce resources to support community-based professionals to improve ACP conversations with cognitively-able OPLWAF in a community setting.
Phase 1
Aim: To start intervention refinement.
Objectives:
- Undertake a review of ACP conversations, their impact on person-centred care, barriers and facilitators.
- Undertake questionnaire with multidisciplinary professionals (staff) (n=≥10) to assess confidence, knowledge, experience and training needs.
Output: An initially refined intervention.
Phase 2
Aim: To develop and refine CLaD 2.0.
Objectives:
- Conduct workshop with staff to understand their views and what refinements and additions are required to CLaD 2.0 for a community setting.
- Refine and develop the CLaD 2.0 intervention with workshop co-production champions and key stakeholders.
Output: A prototype intervention.
Phase 3
Aim: To test and evaluate CLaD 2.0 within the community context.
Objectives:
- Staff complete questionnaire to assess confidence and knowledge before receiving the intervention.
- Staff trial intervention with OPLWF (≤n20 OPLWAF).
- OPLWAF complete questionnaire about the intervention (≤n=20).
- Staff repeat above questionnaire, with additional questions regarding intervention acceptability.
- Semi-structured interviews with self-selected OPLWAF or a proxy (n=≤20).
Output: An intervention ready for testing in wider community settings.
Funding amount
£99,875.58
Funder
Team
Principal investigator
Dr Sarah Combes
Research Fellow
Biography
Sarah Combes is a clinical academic nurse specialising in palliative and end of life care for older people living with advancing frailty, dementia, and multiple long-term conditions. She holds dual roles as a Research Fellow at the University of Surrey and NIHR Senior Research Leader: Nursing and Midwifery at St Christopher’s Hospice.
With a background in leadership, change management, and education across sectors, Sarah brings a systems-level perspective to translational research. Her focuses is on decision-making and workforce development to support people nearing the end of life.
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 continues this work through What matters most? A study using co-production methodologies to support meaningful conversations with older people in the last phase of life. Sarah is also the Research Fellow on In the Driving Cessation Decision Seat, a study testing the feasibility and acceptability of a driving decision aid for people with dementia within UK memory services.
Sarah’s previous studies have focused on improving home-based palliative care for older people with advancing frailty, and building regional partnerships to improve end-of-life care coordination across community settings.
Co-investigator
Professor Caroline Nicholson
Professor of Palliative Care and Ageing
Biography
Caroline Nicholson is a clinical academic nurse who champions Palliative Care For ALL. She holds a chair in Palliative Care and Ageing within the School of Health Science, University of Surrey and a Visiting professor at St Christopher’s Hospice London.
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 leads a research programme focussed supporting older people and their carers to live AND die well over a life long-lived. https://www.surrey.ac.uk/living-and-dying-well-research She is particularly interested in the transitions that occurs in the last phase of life and supporting integrative services and structures to enable care closer to home. She has published extensively in the field of frailty including co-editing the BGS guidance on end of life and frailty for clinicians across the multi-disciplinary team. She is a core re member of the European Association for Palliative Care Reference group on Ageing and Palliative Care and Faculty member of the International Fellowship in Palliative Care. 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.
Research Assistants
Outputs
- Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel | BMC Health Services Research | Springer Nature Link.
- CLaD 2.0 - Conversations on living and dying: Facilitating advance care planning with older people living with advancing frailty | University of Surrey.
Research groups and centres
Our research is supported by research groups and centres of excellence.