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The University of Southampton
Complex Healthcare Processes

Palliative and End of Life Care

Our palliative and end of life care research informs new approaches to symptom management for a range of conditions, identifies and responds to the support needs of carers and those experiencing bereavement, tackles the ethical and logistical dilemmas surrounding organ donation, and uses innovative methodologies to investigate choice at end of life. 

As the authors of the Department of Health's first ever end of life care survey, known as VOICES, we are at the heart of improving services for people who require end of life care.

There are currently three programmes of research: each focused on people affected by cancer, other life limiting illnesses, and those requiring end of life care:

1. Understanding the experiences and concerns of patients who need end of life care

A study of the experience of living with secondary breast cancer
Corner, J., Reed, E., Simmonds, P., Gulliford, T., Semlyen, J. Breast Cancer Campaign. 2003: 36 months

An exploration of the manifestations, management and meaning of weight loss and eating difficulties in people with advanced cancer: Phase II.
Corner, J. Macmillan Cancer Relief.

Assessing the value and impact of constructing illness trajectories for enhancing patient self-management and service delivery in motor neurone disease
Brown, J. Health Foundation (formerly PPP).  2007:

Barriers to Tissue Donation: What cognitive and emotional associations do bereaved family members bring to the multi-tissue and corneal request interview?
Long-Sutehall, T. NIHR. 2010: 36 months

Care at the end of life: experience and support needs of older family caregivers of people with advanced cancer
Bailey, C., Dimbleby Cancer Care. 2009:  24 months

Development of a module to supplement the EORTC Core instruments for assessment of Health Related Quality of Life in patients with Cancer Cachexia
Johnson, C., Fearon, K., Hopkinson, J., Strasser, F., Kaasa S., Caraceni,A., Fitzsimmons, D., Ramage J., Hammerlid E., Vergunst, M.P. EORTC. 2010: 24 months

Exploring the end of life decision-making and hospital experiences of families who did not donate organs or tissues for transplant operations
Long-Sutehall, T. UK Transplant. 2006  

Family distress and grieving in EoLC in Critical Care: causes, consequences and interventions
Coombs, M. NIHR CNO CL. 2010: 36 months

Men as carers in multiple sclerosis: identifying their support needs and preferences
Sibley A., Addington-Hall, J., Brown, J B., Payne, S. MS Society. 2009: 24 months

Research into the supportive care of patients with cancer cachexia syndrome and their family members
Hopkinson, J., Addington-Hall, J., Luker, K.  Macmillan Cancer Support  2008: 36 months

Managing suffering at the end of life: a study of continuous deep sedation until death
Seymour, J., Payne, S., Searle, C., Addington-Hall, J., Mathers, N., Smithson, W.H. ESRC. 2009: 30 months

Systematic review on end of life care experiences of information disclosure, communication and decision-making involvement
Hui, K-Y., Addington-Hall, J., Bailey, C. CECo.

The needs and experiences of children with limited life expectancy and their families
Corner, J., The Health Foundation (Training Fellowship Nursing & Allied Health Professions. 2006:

Quality of Life in older age: Psychometric testing of the multidimensional Older People's Quality of Life (OPQOL)
Banister, D., Bowling, A., Stenner, P., Titheridge, H.  ESRC. 

2. Developing, testing and evaluating new interventions for end of life care

A collaborative research study to develop and test a clinical scorecard for St Christopher's Hospice, Sydenham
Addington-Hall, J., Rogers, A.  St Christopher's Hospice  

A non-pharmacological supportive care intervention for patients with lung cancer and their caregivers in the management of the respiratory distress symptom cluster
Bailey, C., Molassiotis, A., Lloyd -Williams, M., Lorigan, P., Lower, M., Wagland, R., Ellis, J.  National Cancer Research Institute.  

Dignity therapy for older people in care homes
Richardson, A., Hall, S., Higginson, I., Chochinov, H., Murray, S., Harding, R. The Dunhill Medical Trust. 2008: 18 months

Predicting weight loss in people with cancer: Development and validation of a screening tool
Siddall, V., Addington-Hall, J., Hopkinson, J., Porock, D., Wilcock, A., Langley-Evans, S., Arthur, A.  NCRI Supportive and Palliative Care Capacity Building Grant. 2009: 24 months

3. Investigating the organisation and delivery of an end of life care strategy

A pilot study to investigate an approach to researching the symptom complexes associated with early and late stage lung cancer, and the factors associated with delay in presentation and diagnosis of lung cancer
Corner, J., Department of Health, Policy Research Programme. 2003: 12 months

A study of the effectiveness of the Macmillan Approach To Weight Loss and Eating Difficulties
Hopkinson, J., Macmillan Cancer Support 2008:  

A survey of provision of breast care nursing for patients with metastatic breast cancer
Fenlon, D. Breast Cancer Care.  

Change in management from clinic to home: Acceptability and barriers to successful implementation. A qualitative exploration of intravenous and oral bisphosphonates in metastatic breast cancer 
Nelson, A., Morris, J., Fenlon, D. Wales Cancer Trials  Unit 2009:

Developing Stated preference discrete choice experiments for improving the redesign of patient-led healthcare services
Gerrard, K., Bolt, T. National Institute of Health Research Career Development Award. 2008: 60 months

Developing a utility index for End of Life care
Gerard, K., Addington-Hall, J., Bolt, T. Part of National Institute of Health Research Career Development Award. 2011: 12 months  

End of Life Care in Intensive Care Settings: a case study approach
Coombs, M., Addington-Hall, J., Rogers, A.

Evaluation of the innovative hospice services for non-cancer patients
Addington-Hall, J. Help the Hospices.

Exploring the views and experiences of critical care nurses when involved in providing and facilitating end of life care
Coombs, M., Addington-Hall, J., Ugboma, D., Willis, H., Palmer, R. The Burdett School of Nursing.  

International place of death study
Hunt, K., Addington-Hall, J., Cohen, J., Houttekier, Deliens, L. The Research Foundation - Flanders (FWO).

Measuring and evaluating end-of-life care in services for adults with learning disabilities in the UK
Hunt, K., Todd, S., Kroll, T., Forrester, R., Reed, S., Barr, O. Bailey Thomas. 2013 : 30 months

Measuring treatment workload, burden and capacity to self-manage heart failure
Hunt, K., James, L., Anton-Solanas, Richardson, A., May, C. Annual Adventures in Research - University of Southampton. 2012: 12 months

Palliative care in acute strokes
Addington-Hall, J. The Stroke Association. 19 months

Patient Centred Integrated Medicine in the Management of Chronic Illness: a Qualitative Study
Brien, S., Lewith, G., Bishop, F.  

Systematic review on preference for place of care/death in end of life
Hui, K-L., Addington-Hall, J., Bailey, C. CECo.  

The IMPROVE study: VOICES redesign and testing project to inform the development of a national survey
Addington-Hall, J., Hunt, J., Hui, K-Y., Shlomo, N. Department of Health. 2009: 18 months

Transitions between services at the end of life for older people: patient and provider perspectives
Hanratty, B., Addington-Hall,  J., Lowson, E., Holmes, L., Goldacre, M., Grande, G., Payne, S. National Institute of Health Research. 2009: 36 months

Variations in out of hours end of life care provision across primary care organisations in England and Scotland
Addington-Hall, J., Gerard, K., Brien, S., Brailsford, S., Salisbury, C., Heaney, D., Todd, C., Moore, M., Leyden, G., England, H., Lattimer, V. National Institute for Health Research, Service Delivery and Organisation Programme. 2010: 24 months

An investigation about transferring patients in critical care home to die: experiences, attitudes, population characteristics and practices
Richardson, R., Addington-Hall, J., Coombs, M., Long-Sutehall, T., Darlington, A-S Marie Curie Cancer Care.  2011: 24 months

Our staff have also participated in these other related areas of research:

Patients' experiences of care and the influence of staff motivation, affect and well-being 
Richardson, A., Maben, J., Peccei, R., Robert, G., Murrells, T., Cornwell, J., Conway, N., Bell, G. National Institute of Health Research SDO Programme.  2008: 18 months

A randomised controlled trial of outpatient cervical priming for induction of labour
Turnbull, D., Wilkinson, C., Gerard, K., Ryan, P., Bryce, R., Stamp, G., Howard, K. National Health and Research Council Australia.

Benefit transfer study of Chlamydia Screening preferences using DCE data
Gerard, K., Bolt, T., Watson, V., Veerakathy, H. NIHR Career Development Fellowship. 

End of Life Research
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