The STRENGTH Study: Understanding and supporting anticipatory grief in unpaid carers
Start date
01 May 2026End date
31 October 2027Overview
Many unpaid carers (sometimes called informal or family carers) look after older people who are living with severe frailty or several long‑term health conditions. This can be rewarding, but it can also be emotionally difficult. One challenge that often goes unnoticed is anticipatory grief, the sadness and worry someone feels when they know they may lose a loved one in the future. This grief can start long before death and can affect carers’ mental and physical health.
Up to one in four carers experience anticipatory grief, and it can lead to stress, anxiety, low mood, poor sleep, and difficulty looking after themselves. Even so, most support services only focus on helping people after a bereavement, not before. There are currently no dedicated services designed to support carers dealing with this type of grief when caring for older people with frailty or multiple long-term health problems.
What the STRENGTH study will do
The STRENGTH study is an 18‑month research project aiming to understand anticipatory grief better and to build a clear plan for future support. The study includes three parts:
- Reviewing existing research to better understand what anticipatory grief is and what support already exists.
- A national survey and interviews with unpaid carers in England to learn directly from their experiences.
- Working with carers and service providers to bring the findings together and design a model that could guide new support services.
The study follows national guidance on how to develop and test complex health and social care interventions, and it involves carers throughout to ensure the work reflects real needs.
Why this matters
By learning more about anticipatory grief and identifying what kind of support carers want and need, the STRENGTH study will help shape better, fairer, and more preventative services. Ultimately, this research aims to improve the wellbeing of unpaid carers and strengthen support within social care.
Aims and objectives
Aim
To develop an evidence-informed, context-sensitive logic model to support unpaid adult carers of older people (aged ≥65 years) with complex health conditions in identifying and managing anticipatory grief.
Objectives
- Review and summarise existing research to understand what is already known about anticipatory grief and what support currently exists.
- Run a national survey to learn about carers’ experiences of anticipatory grief, what support they feel they are missing, and what kind of help they would find useful.
- Carry out in‑depth interviews with a diverse group of carers to explore their personal experiences and how anticipatory grief changes over time.
- Bring together the results from the review, survey, and interviews to build a complete picture of carers’ needs.
- Work alongside carers and service providers to co‑create and refine a clear plan (logic model) that will guide the development of future support.
Funding amount
£249,980.35
Funder
Team
Principal investigators
Dr Richard Green
Surrey Future Fellow
Biography
Richard was awarded a prestigious Surrey Future Fellowship in April 2023 to develop an ambitious interdisciplinary programme of research focused on understanding and addressing complex challenges in health and social care using artificial intelligence, systems thinking, and simulation methods. His current work explores how agent-based modelling (ABM) and participatory approaches can be used to investigate under-examined areas of care provision and access, primary, community, palliative, unpaid, and integrated care contexts.
Richard’s research vision is shaped by a commitment to advancing qualitative and mixed-method research that accounts for the complexity of care systems and the lived experiences of older adults and their caregivers. He is particularly interested in how simulation methods can support both research and policy.
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.
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-investigators
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.
Dr Emily Corrigan-Kavanagh
Surrey Future Fellow in Designing AI for Home Wellbeing, Surrey AI Fellow
Biography
Research interests & background
I am a design researcher and academic, with special interests in designing people-centred artificial intelligence for wellbeing, home wellbeing, service design, participatory research methods, technology for good, and creative research methods. My expertise include a range of participatory approaches for engaging stakeholders in the design of new technologies such as world cafes, design workshops and in-depth interviews as well as novel implementation of creative research methods, such as photo elicitation and art therapy techniques.
I have published widely on topics such as creative research methods, designing for home wellbeing, assistive technology, service design, enriching travel experiences, sound sensing AI, and AI for home wellbeing. I am also a TEDx speaker, a member of the International Advisory Council for the Design Research Society and of the BSI (British Standards Institution) Technical Committee for Ageing Societies, currently part of the working group for delivering a new ISO (International Standards Organisation) standard for multigenerational neighbourhoods.
I am passionate about exploring design research approaches and methods for delivering new AI technologies and associated services, especially those supporting psychological wellbeing within the home and surrounding community. Relatedly, I am the founder and leader of the special research interest group "Home Wellbeing" at the University of Surrey.
I welcome PhD supervision enquires for projects exploring new design approaches and creative methods for developing new AI technologies and associated services with end-users.
News & events
- 22 November: Presented "A Virtual World Cafe Method for Participatory Design of AI Systems" at Second UK AI Conference 2024, University of Birmingham, UK
- 29-30 October 2024: Facilitated two World Cafe style focus groups exploring future technology design requirements for home wellbeing with local residents in Dumfries, Scotland in collaboration with The Crichton Trust
- 25 June 2024: Presented extended abstract "Designing AI for Home Wellbeing and Future Implications for Healthcare Technologies" at Design4Health, Sheffield, UK
- 18 June 2024: Presented webinar "Exploring Sound Sensing AI for Home Wellbeing through Participatory Design Research" through UK Acoustics Network (UKAN):https://youtu.be/Ht75h0euWFQ
- 13 June 2024: Elected to the Designing Research Society (DRS) International Advisory Committee
- 12 July 2022: Organised and hosted "Designing AI for Home Wellbeing" AI Seminar Day with 10 speakers, including national and international AI experts, at 6G Innovation Centre, University of Surrey, UK
- 11 July 2022: Facilitated "Designing AI for Home Wellbeing" World Cafe with 24 AI experts, University of Surrey, UK
- 30 June 2022: Facilitated "Designing AI for Home Wellbeing" focus group at DRS2022, Bilbao, Spain
- 18 May 2022: Presented bespoke creative method "Happy Homes Workshop" (employing art therapy techniques) at "Envisioning and designing digital technology for the home" workshop held at the Museum of the Home, London
- 14 May 2022: Delivered TEDx talk "Designing AI for Wellbeing"
- 7 March 2022: Led "virtual world cafe" exploring sound sensing technology for workplace wellbeing with 14 UK office-based workers
- 31 January 2022: Appointed member of AHRC Peer Review College to provide expert reviews on AHRC scheme
- 20 January 2022: Invited as guest speaker to deliver presentation on AI4S research to Discover.ai
- 13 December 2021: Winner of Research England Participatory Research Grant (£10K) to explore AI for workplace wellbeing
- 12 December 2021: Appointed Surrey AI Fellow for new People-centred AI Institute to lead pan-University collaboration on AI related research, teaching and innovation
- 6 December 2021: Won IAS Workshop Fund (£3.5) to plan and host "Designing AI for Wellbeing" World Cafe
- 12 November 2021: Hosted "Envisioning Future Homes for Wellbeing" online event
- 2 November 2021: Hosted "Research and Innovation in Technologies for Home Wellbeing" and "Future Technologies for Home Wellbeing" at 5G/6G Innovation Centre, University of Surrey
- 2 September 2021: Named researcher on successful National Cyber Security Centre (NCSE) grant to the Academic Centre of Excellence in Cyber Security Education (ACE-CSE)
- 9 August 2021: Won the EPSRC IAA Commericalisation Fellowship
- 9 August 2021: Won ESRC IAA funding to run two events for the ESRC Festival of Social Sciences
- 22-23 June 2021: Presented poster at Shaping Futures Conference 2021 [Twitter]
- 9 June 2021: Invited talk at UKRI ECR Forum welcome week
- 20 May 2021: Invited talk at Response-ability Summit 2021 [Twitter] [LinkedIn]
- 12 May 2021: Invited talk at the Institute of Sound Recording (IoSR) seminar day
- 22 April: led "virtual world cafe" with 12 Guildford residents to explore directions for new sound sensing technology to improve sounds in urban environments
- 19-21 April 2021: Presented poster at Urban Sound Symposium "Exploring Sound Sensing to Improve Quality of Life in Urban Living"
- 24 Mar 2021: Presented Connected Places Catapult Breakfast Briefing: Enabling Thriving Urban Communities through Sound Sensing AI Technology, with Prof Mark Plumbley [Twitter] [LinkedIn]
- 12 Nov 2020: Invited talk with Prof Mark Plumbley at #LboroAppliedAI seminar series on Applied AI, Univ of Loughborough
Dr Mary Hodgson
Director of Inclusion and Social Innovation - St Christopher’s Hospice
See profile Fiona Walkingshaw
Head of Bereavement Services - St Christopher’s Hospice
See profileResearch groups and centres
Our research is supported by research groups and centres of excellence.