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.
In the media
Research interests cluster around 3 themes
- Healthy Ageing - as defined by WHO as the process of developing and maintaining the functional ability, intrinsic capacity, and environmental factors that enables well being in older age
- Care transitions and end of life care
- Older people living with advanced frailty and the development of care systems and a diverse workforce to meet their needs
You can find out more about these research streams at our Living and Dying Well Research website.
The PALLUP study, funded through the HEE/NIHR ICA Senior Clinical Lectureship scheme, is a five-year study that aims to identify and understand Palliative Care needs of older people living with advancing frailty, develop the evidence-base for provision of community palliative care, and co-design resources better to access and deliver palliative care
Overall Research Questions
- What are the specific Palliative Care needs of frail elders living at home as they approach end-of-life?
- What are the key features and actions of community service delivery that better address Palliative Care needs of frail elders and how might carers better access this care?
Phase Specific Aims and Objectives
Phase 1- Aim: To establish consensus on the core Palliative Care needs of severely frail elders.
- Undertake a two round Modified Delphi with clinicians, severely frail elders, their family carers and care providers across health, social and third sectors to identify core palliative care needs
- Contribute insight about the shared and distinctive features of core palliative care needs of frail elders
Phase 2- Aim: To map and categorize the scope of, and variation in, community palliative care provision for severely frail elders and identify common features of innovative service provision using an England wide Survey
- Document common responses of care agencies to palliative care needs
- Describe common components of innovative services introduced to meet palliative care needs of frail elders
Phase 3- Aim: Use in-depth case studies to understand the (met and unmet) Palliative Care needs and experiences of care for severely frail elders as they approach end-of-life, their families, and the response of care agencies.
- A multi-perspective investigation using longitudinal, prospective, in-depth case studies (N=3) in sites identified as delivering innovative models of care delivery.
- Explore, from their perspective, the experiences of frail elders as they approach end-of-life and that of family carers and care agencies; in relation to the met and unmet Palliative Care needs, changes in these needs, how this is identified and agency response
- Characterize and describe core service components of Palliative Care for frail elders
- Identify and Understand elements of service assessment, response and configuration that facilitates or impede meeting Palliative Care needs
Phase 4- Aim: To develop a framework of Palliative Care provision for severely frail elders approaching the end-of-life, generate guidance for service delivery that better addresses their Palliative Care needs and a tool for carers to trigger access.
- Determine the key features of palliative care for frail elders approaching end-of-life
- Develop Service Framework on key features of Palliative care and tools to facilitate adoption and co-design a tool for family carers to self-identify triggers to access Palliative Care and carry out preliminary testing of tools in practice
- Inform future research through consensus on specific Palliative Care needs of frail elders
- Describe and characterize services nationwide
- Inform service delivery by enhanced understanding of experiences of frail elders
- Create a Service Framework outlining key features of community Palliative Care for frail elders-
- Provide detailed guidance and resources on embedding the key features of Palliative Care for frail elders into services and recommendations on assessments and measurements that best supports delivery of this care-
- Tool for family carers to self-identify triggers to Palliative Care
Aim: To grow a research Partnership of care providers that will improve the coordination of end-of-life care for older people living with advancing frailty in the community.
Background: Frailty affects 10% of people aged over 65, increasing to around 65% of people aged over 90. Frailty is a state of vulnerability that lowers physical and mental ability and leads to an increased risk of disability and admission to hospital or a care home. Death from frailty is common. Someone with advancing frailty may need help from others such as help around the home or going out, or they may be completely dependent on others for personal care. Living with advancing frailty often means living with having multiple care needs that require care from multiple providers and sectors, for example the NHS, social services, and the not-for-profit sector. However, this care is often patchy and not joined up, with families often needing to providing and coordinating care. These factors can lead to poor quality of life for people with frailty and their families. Little research has studied how to best support and care for people with advancing frailty as they near the end of life, particularly as they move between care providers and sectors. Our new Partnership will support care providers and individuals to 1. grow research skills. 2. establish what we need to know to provide joined-up health and social care services 3. write clear research proposals and 4. be ready to lead or help with these studies.
The Partnership: Our Partnership brings together three diverse regions of England that, according to NIHR statistics, are underrepresented in end of life research: South East England, South West London, and the East Midlands. Partnership members are care providers across the NHS, social care and not-for-profit organisations, universities, and frail older people and their families. We will be supported by Integrated Care Systems, which are new government bodies designed to improve the way local health and care organisations work together. Our Partnership is community-focussed, as this is where most older people wish to live out their final years.
Activity and Outcomes: Over a 15-month period we will work with Partnership members to grow research skills and knowledge, and agree what research needs to be done. We will:
• Establish the Partnership, including identifying and connecting all key contacts (months 1-2)
• Investigate and cChart current research capacity and care provision and investigate research opportunities, to understand what helps and what hinders Partnership care providers to 1. get involved in research, 12. work together to support those living with advancing frailty, (months 3-9)2. get involved in research (months 3-9)
• Carry out activities such as: developing and supporting PPIE within each region, jointly developing guidelines, and delivering training, to support Partnership members to become more research confident (months 6-12)
• Agree future research priorities and prepare a research proposal for NIHR funding (months 12-15)
Involving People: Older people and their networks are central to every activity. A key outcome is that each region will be helped to develop local PPIE to support the Partnership and future research. A ‘buddy’ system of PPIE experienced Partnership members matched with naïve ones will foster strong PPIE systems being established PPIE development will follow NIHR PPIE principles and be led by an expert in the field. Older people and their networks are central to every activity. A key outcome is that each region will be supported to develop local PPIE to support the Partnership and future research.
Dissemination: We will work with all Partnership members to agree on how and where best to tell people about our work and learning, e.g. research informed practice events and public engagement activities.
- Combes S, Gillett K, Norton C, Nicholson CJ. The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning. Palliative Medicine. 2021;35(6):1137-1147. doi:10.1177/02692163211013260
- Combes, S., Forbes, G., Gillett, K, Norton, C., and Nicholson, CJ. Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel. BMC Health Serv Res 21, 712 (2021). https://doi.org/10.1186/s12913-021-06548-4
- Etkind, S.N., Lovell, N., Bone, A.E., Guo, P., Nicholson, C., Murtagh, F. E.M, and Higginson, I. J. The stability of care preferences following acute illness: a mixed methods prospective cohort study of frail older people. BMC Geriatr 20, 370 (2020). https://doi.org/10.1186/s12877-020-01725-2
- Evans, C and Nicholson, C Living and Dying in Late Old Age in Nursing Older People – Realties of Practice in Nursing Older People (2019) ( Eds Elbourne A, H and le May, A) Taylor and Francis
- Combes, S, Nicholson, CJ, Gillett, K & Norton, C (2019) 'Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model', Palliative Medicine, https://doi.org/10.1177%2F0269216319845804
- Evans, C,J.; Ellis-Smith,C.; Nicholson, C.;Costa, A.; Oluyase, A.O.; Namisango, E.;Bone A.E.; Brighton, L.J.; Yi,D.; Combes,S.; Bajwah,S.; Gao ,W.; Harding,R.; Higginson, I,J.; and Maddocks,M. "Rapid Scoping Review of Service Delivery Models to Maximise Quality of Life for Older People at the End of Life ", (2019) Milbank Quarterly 97, 1 p 113-175
- Etkind,S, Lovell,N, Nicholson, C , Higginson, I. J. & Murtagh, F. F. Finding a ‘new normal’ following acute illness: A qualitative study of influences on frail older people’s care preferences (2019) Palliative Medicine 33(3) p301-311
- Nicholson C, Davies JM, George R, Smith, B, Pace V, Harris L, Ross J, Noble J, Hansford P, Murtagh FE. (2018) What are the main palliative care symptoms and concerns of older people with multimorbidity?—a comparative cross-sectional study using routinely collected Phase of Illness, Australia-modified Karnofsky Performance Status and Integrated Palliative Care Outcome Scale data. Annals of Palliative Med Vol 7 Supplement 3, P 164-175
- Nicholson, C. (2018) Palliative Care, Frailty and Older People in Textbook of Palliative Care. Editors in Chief- MacLeod, R and de Block, L Springer doi:10.1007/978-3-319-31738-0_66-1
- Cheng, J.J.K and Nicholson, C (2018) Prioritizing the integration of geriatric oncology and palliative care Journal of Geriatric Oncology https://doi.org/10.1016/j.jgo.2018.07.001
- Nicholson, C and Richardson, H (2018) Age-attuned Hospice Care; an opportunity to better end of life care for older people. St Christopher's Hospice
- Pask, S., Pinto, C., Bristowe, K., Van Vliet, L., Nicholson, C., Evans, C. J., George, R., Bailey, K., Davies, J. M., Guo, P., Daveson, B. A., Higginson, I. J. & Murtagh, F. E (2018). A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals, Palliative Medicine. Published Online 28.2.18.
- Sarre, S., Maben, J., Aldus, C., Schneider, J., Wharrad, H., Nicholson, C. & Arthur, A. (2017). The challenges of training, support and assessment of healthcare support workers: A qualitative study of experiences in three English acute hospitals International Journal of Nursing Studies. 79, p.145-153
- Martin J, Nicholson, C and George, R. (2017). The approach of dying and death, and the mourning process of the survivors. Chapter 28 in Oxford Textbook of Geriatric Medicine Third Edition, Michel, J.P; Beattie, L.B.; Martin, F.C.& Walston,J .D (eds) Oxford University Press
- Combes, S., Nicholson, C., Gillett, K. & Norton, C. (2017). UK: BMJ and BMJ Publishing, Conversations on living and dying: Facilitating advance care planning for older people with frailty Vol. 7. BMJ Supportive & Palliative Care. p. A16 C.
- Nicholson, C., Gordon, A.l. & Tinker, (2017). ‘Changing the way “we” view and talk about frailty’ Age and Aging, 46, 3, p.349-351
- Nicholson, C., Morrow, E.M., Hicks, A. & Fitzpatrick, J. (2017). ‘Supportive care for older people with frailty in hospital: An integrative review’ International Journal of Nursing Studies. 66, p.160-71
- Elliott, M. & Nicholson, C. (2017). ‘A qualitative study exploring use of the surprise question in the care of older people: perceptions of General Practitioners and challenges for practice’ BMJ Palliative and Supportive Care Journal. 7, 1, p. 32-38
- Antony A Aldus, S Sarre, J Maben, H. Wharrad, J. Schneider, G. Barton, E. Argyle, A. Clark, F. Nouri, C. Nicholson, C. (2017). Can Healthcare Assistant Training improve the relational care of older people? (CHAT) A development and feasibility study of a complex intervention NIHR HSD&R, 5 (10)
- Nicholson, C., Maben, J. & Ream, E, (2016). 'Partnership between healthcare staff and carers on wards' BMJ, 351, h6933
- Arthur, A., Maben, J., Wharrad, H., Aldus, C., Sarre, S., Schneider, J., Nicholson, C., Barton, G., Cox, K. & Clark, A. (2015). A. ‘Can Healthcare Assistant Training (CHAT) improve the relational care of older people? Study protocol for a pilot cluster randomised controlled trial’ Trials, 16, 559
- Nicolson, C. (2016). ‘Developing a clinical research career’, Nursing Times, 112, 24, p.16-18
- Amador, S., Goodman, C., Mathie, E. & Nicholson, C. (2016). 'Evaluation of an organisational intervention to promote integrated working between health services and care homes in the delivery of end-of-life care for people with dementia: Understanding the change process using a social identity approach', International Journal of Integrated Care, 16, 2, p.14
- Nicholson, C. (2016). 'How do we facilitate carers' involvement in decision making?' Nursing Older People, 28, 3, p.14
- Nicholson, C. (2016). ‘Involving carers and families in the care of their loved ones’ Nursing Older People, 28, 3, p.14
- Nicholson, C. (2016). ‘Collaboration between relatives of elderly patients and nurses and its relation to satisfaction with the hospital care trajectory’ Nursing Older People, 28, 3, p.14
- Morrow, E.M. & Nicolson, C. (2016). 'Carer engagement in the hospital care of older people: An integrative literature review'. International Journal of Older People Nursing. page 298-314
- Whittaker, K.A., Maben, J.E., Cowley, S.A., Nicholson, C.J., Malone, M.E. & Grigulis, A.I. (2015) ‘Making a difference for children and families. An appreciative inquiry of health visitor aspirations, values and beliefs and why they start and stay in post’ Health & Social Care in the Community 10.111
- Policy+ (KCL, NNRU) May 2011- 2014 ( co-editor) Ball, J and Nicholson, C
- Bridges, J., Nicholson, C., Maben, J., Pope, C., Flatley, M., Wilkinson, C., Meyer J. & Tziggili, M. ‘Capacity for care: meta-ethnography of acute care nurses’ experiences of the nurse-patient relationship’ Chapter in: Patient- centred healthcare: Achieving co-ordination, communication and innovation, 2014, Palgrave Macmillan
- Nicholson, C., Meyer, J., Flatley, M., Holman, C. (2013). ‘The experience of living at home with frailty in old age: A psychosocial qualitative study’. International Journal of Nursing Studies, 50, p.1172-1179
- Bridges, J., Nicholson, C., Maben, J., Pope, C., Flatley, M., Wilkinson, C., Meyer J. & Tziggili, M. (2013) ‘Capacity for care: meta-ethnography of acute care nurses’ experiences of the nurse-patient relationship’. Journal of Advanced Nursing, 69, 4, p.760-772
- Nicholson, C. & Barnes, J. (2013). ‘Appreciative Inquiry’, Chapter 6 in: Participatory Research in Palliative Care: Actions and Reflections, Hockley, J. Froggatt, K. & Heimerl, K. (eds) OUP
- Rodriguez-Manas, L., Feart, C., Mann, G.E., Vina, J., Somnath, C.J., Chodzko-Zajko, W., Gonzalez-Colaco Harmand, M., Bergman, H., Carcaillon, L., Nicholson, C., Scuteri, A., Sinclair, A., Pelaez, M., Van der Cammen T., Beland, F., Bickenbach, J., Delamarche, P., Ferrucci, L., Fried, P., Gutierrez-Robledo, L.M., Rockwood, K., Rodriguez Artalejo, F., Serviddio, G., VegaE. (2012) ‘Searching for an Operational Definition of Frailty: A Delphi Method Based Consensus Statement. The Frailty Operative Definition-Consensus Conference Project’. Journals of Gerontology Series: A, Biological Sciences and Medical Sciences, 68, 1, p.62-67
- Nicholson, C., Meyer, J., Flatley, M., Holman, C., Lowton, K. (2012). ‘Living on the margin: understanding the experience of living and dying with frailty in old age’ Social Science and Medicine, 75, 8, p.1426-1432
- Nicholson, C.J. & Hockley, J. (2011). ‘Death and Dying in Older People’, Chapter 9 in: Death, Dying and Social Differences – 2nd Edition OUP
- Nicholson, C., Dale, P., Flatley, M., Meyer, J., Wessel, L. & Wilkinson, C. (2010). ‘Everybody matters 3: engaging patients and relatives in decision making to promote dignity’ Nursing Times, 106, 22
- Nicholson, C., Dale, P., Flatley, M., Meyer, J., Wessel, L. & Wilkinson, C. (2010) ‘Everybody matters 2: promoting dignity in acute care through effective communication’ Nursing Times, 106, 21
- Nicholson, C., Dale, P., Flatley, M., Meyer, J., Wessel, L. & Wilkinson, C. (2010). ‘Everybody matters 1: how getting to know your patients helps to promote care’ Nursing Times, 106
- Nicholson, C. and Flatley, M. Everybody Matters; the Dignity in Care Project. Unpublished Report. Royal Free Hospital /City University. London
- Nicholson, C. (2009) Researcher emotions: a way into the experiences of frail older people’ Journal of Social Work Practice, 23, 4, p.451-459
- Bridges, J., Flatley, M., Meyer, J. & Nicholson, C. (2009). ‘Best Practice for Older People in Acute Care Settings (BPOP): Guidance for Nurses’ Nursing Standard, 24, 7
- Bridges, J. & Nicholson, C. (2008) ‘Service improvement using patient narratives: engaging with the issues’ International Journal of Older People Nursing, 3, 3, p. 217-222
- Nicholson, C. (2007). End-of-Life Care. In My Home Life. Quality of Care in Care Homes, National Care Home Research and Development Forum, Chapter 9, p.118-128, HTA London
- Meyer, J., Heath, H., Holman, C., Owen, T., Bridges, J., Wilson- Brown, C., Dewar, B., Dudman, J., Davies, S., Nicholson, C., O' May, F. and Reed, J. (2006) ‘Moving from victim blaming to an appreciative inquiry: exploring quality of life in care homes’ Quality in Ageing, 7, 4, p.27-36
- Nicholson, C & Wells, M. (2003). ‘After Treatment is Over’ Chapter 4 in: Supportive Care in Radiotherapy, Faithfull, S and Wells, M(eds) Churchill Livingstone