Cancer Experiences
Collaborative

CECo Publications

Listed below, you will find all published outputs resulting either directly from the work of the Collaborative or benefiting from the work of the Collaborative.

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Journal Articles | Editorials | Bulletins | External Newsletters | Book Chapters | Books

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Journal Articles

Farquhar MC, Ewing G, Booth S (2011) Using mixed methods to develop and evaluate complex interventions in palliative care research Palliative Medicine, 25(8) pp. 748-757.

Froggatt K, Hockley J (2011) Action research in palliative care: Defining an evaluation methodology Palliative Medicine, 25(8) pp. 782-787.

Walshe C (2011) The evaluation of complex interventions in palliative care: An exploration of the potential of case study research strategies Palliative Medicine, 25(8) pp. 774-781.

Seymour JE, Kumar A, Froggatt (2011) Do nursing homes for older people have the support they need to provide end- of-life care? A mixed methods enquiry in England Palliative Medicine, 25(2) pp. 125-138.

Sheila Payne, Jane Seymour, Alex Molassiotis, Katherine Froggatt, Gunn Grande, Mari Lloyd-Williams, Claire Foster, Roger Wilson, Liz Rolls, Chris Todd, Julia Addington-Hall (2011) Benefits and challenges of collaborative research: lessons from supportive and palliative care BMJ Supportive and Palliative Care, 1(1) pp. 5-11.

Wood, M. J. M., Molassiotis, A. and Payne, S. (2011) What research evidence is there for the use of art therapy in the management of symptoms in adults with cancer? A systematic review Psycho-Oncology, 20(2) pp. 135-145.

Froggatt K, Hockley J, Parker D, Brazil K (2010) A system lifeworld perspective on dying in long term care settings for older people: Contested states in contested places Health & Place (Online)

Rolls L, Seymour JE, Froggatt KA, Hanratty B (2010) Older people living alone at the end of life in the UK: research and policy challenges Palliative Medicine

Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ (2010) Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008) Palliative Medicine, 24(6) pp. 594-607.

Stajduhar KI, Funk L, Toye C, Grande GE, Aoun S, Todd CJ (2010) Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008) Palliative Medicine, 24(6) pp. 573-593.

C. Stevinson, N. Preston, C. Todd and Cancer Experiences Collaborative (CECo) (2010) Defining priorities in prognostication research: results of a consensus workshop Palliative Medicine, 24(5) pp. 462-468.

Clark D, Clark J, Greenwood A (2010) The place of supportive, palliative and end-of-life care research in the United Kingdom Research Assessment Exercise, 2001 and 2008 Palliative Medicine, 24(5) pp. 533-543.

Hennings J, Froggatt K, Keady J (2010) Approaching the end of life and dying with dementia in care homes: the accounts of family carers Reviews in Clinical Gerontology

Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences BMC Palliative Care, 9(4) pp. 1-9.

Rigby J, Payne S, Froggatt K (2010) Review: What evidence is there about the specific environmental needs of older people who are near the end of life and are cared for in hospices or similar institutions? A literature review Palliative Medicine, 24(3) pp. 268-285.

Addicott R, Ashton R (Eds) (2010) Delivering better care at end of life: The next steps The King's Fund

Alex Molassiotis, Sarah Brearley, Mark Saunders, Olive Craven, Andrew Wardley, Carole Farrell, Ric Swindell, Chris Todd, and Karen Luker (2009) Effectiveness of a Home Care Nursing Program in the Symptom Management of Patients With Colorectal and Breast Cancer Receiving Oral Chemotherapy: A Randomized, Controlled Trial Journal of Clinical Oncology, 27(36) pp. 6191-6198.

M Gott, C Gardiner, N Small, S Payne, D Seamark, S Barnes, D Halpin, and C Ruse (2009) Barriers to advance care planning in chronic obstructive pulmonary disease Palliative Medicine, 23(7) pp. 642-648.

Small N, Barnes S, Gott M, Payne S, Parker C, Seamark D, Gariballa S (2009) Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK BMC Palliative Care, 8 pp. 6.

Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, Payne S, Todd C (2009) Supporting lay carers in end of life care: current gaps and future priorities Palliative Medicine, 23(4) pp. 339-344.

Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, Payne S, Todd C (2009) Supporting lay carers in end of life care: current gaps and future priorities Palliative Medicine, 23(4) pp. 339-344.

Thomas C, Reeve J, Bingley A, Brown J, Payne S, Lynch T (2009) Narrative Research Methods in Palliative Care Contexts: Two Case Studies Journal of Pain and Symptom Management, 37(5) pp. 788-796.

Thomas C, Reeve J, Bingley A, Brown J, Payne S, Lynch T (2008) Narrative Research Methods in Palliative Care Contexts: Two case studies Journal of Pain and Symptom Management, 37(5) pp. 788-796.

Brown JB, Bingley AF, Payne SA (2008) The need for narrative research. The Cancer Experiences Collaborative (CECo) End of Life Care, 2(3) pp. 62-64.

Barclay S, Arthur A (2008) Place of death – how much does it matter? The priority is to improve end of life care in all settings British Journal of General Practice, 58 pp. 229-231.

Brown JB, Addington-Hall J (2008) How people with motor neurone disease talk about living with their illness: a narrative study Journal of Advanced Nursing, 62(2) pp. 200-208.

Cohen J, Bilsen J, Miccinesi G, Lofmark R, Addington-Hall J, Kaasa S, Norup M, Van der Wal G, Deliens L (2008) Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses BMC Public Health, 7 pp. 283.

Wilson E, Elkan R, Seymour J, Almack K (2008) A UK literature review of progressive long term neurological conditions British Journal of Community Nursing, 13(5) pp. 206-212.

Lloyd-Williams M, Hughes JG (2008) The management of anxiety in advanced disease Progress in Palliative Care, 16(1) pp. 47-50.

Bingley AF, Thomas C, Brown J, Payne SA (2008) Developing narrative research in supportive and palliative care: the focus on illness narratives Palliative Medicine, 22(5) pp. 653-658.

Almack K (2007) Palliative care and end of life care for the non-heterosexual community End of Life Care for Nurses, 1(2) pp. 27-32.

Brown JB, Addington-Hall J (2007) Identifying how people with MND/ALS talk about living through their illness: a narrative study to enhance self-management Amyotrophic Lateral Sclerosis, 8(1) pp. 49.

Gott M, Barnes S, Payne S, Parker C, Seamark D, Gariballa S, Small N (2007) Patient views of social services provision for older people with advanced heart failure Health and Social Care in the Community, 15(4) pp. 333-342.

Gott M, Barnes S, Payne S, Parker C, Seamark D, Gariballa S, Small N (2007) Dying trajectories in heart failure Palliative Medicine, 21 pp. 95-99.

Lloyd-Williams M, Kennedy V, Sixsmith A, Sixsmith J (2007) The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying Journal of Pain and Symptom Management, 24(1) pp. 60-66.

Payne S (2007) Public health and palliative care (Editorial) Progress in Palliative Care, 15(3) pp. 101-102.

Payne S, Field D, Kerr C, Hawker S, Rolls L (2007) Evaluating case study methods research for use in end of life care practice: reflections on three studies Journal of Advanced Nursing, 58(3) pp. 236-245.

Payne S, Hudson P (2007) Collaboration on research into family carers moves a step forward European Journal of Palliative Care, 14(5) pp. 218.

Sargeant A, Payne S, Gott M, Small N, Oliviere D (2007) User involvement in palliative care: motivational factors for service users and professionals Progress in Palliative Care, 15(3) pp. 126-132.

Sargeant A, Payne S, Gott M, Small N, Oliviere D (2007) User involvement in palliative care: Motivational factors for service users and professionals Progress in Palliative Care, 15(3) pp. 126-132.

Seymour J (2007) Needs and preferences of patients with diseases other than cancer: the UK experience Progress in Palliative Care, 15(3) pp. 108-112.

Seymour JE (2007) Windows on suffering: sociological perspectives on end of life care 2, 2

Seymour JE, Payne S, Chapman A, Holloway A (2007) Expectations of end of life care among white and Chinese older people in the UK Sociology of Health and Illness, (monograph), 29(6)

Stevens T, Payne S, Burton C, Addington-Hall J, Jones A (2007) Palliative care in stroke: a critical review of the literature Palliative Medicine, 21(4) pp. 323-331.

Wilson E, Seymour J (2007) Exploring the palliative and end of life care needs of those affected by progressive long-term neurological conditions Journal of Care Services Management, 2(1) pp. 92-102.

Foster C, Brown J, Killen M, Brearley S (2007) The NCRI Cancer Experiences Collaborative: defining self-management European Journal of Oncology Nursing, 11(4) pp. 295-297.

Payne S, Addington-Hall J, Richardson A, Sharpe M (2007) Supportive and palliative care research collaboratives in the United Kingdom: an unnatural experiment? Palliative Medicine, 21(8) pp. 134-144.

Hagen NA, Addington-Hall JM, Sharpe M, Richardson A, Cleeland CS (2006) Proceedings of the Birmingham International Workshop on supportive, palliative and end of life care research Cancer, 107 pp. 874-881.

Bailey C, Wilson R, Addington-Hall J, Payne S, Clark D, Lloyd-Williams M, Molassiotis A, Seymour J (2006) The Cancer Experiences Research Collaborative: building research capacity in supportive and palliative care Progress in Palliative Care, 14(6) pp. 265-270.

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Editorials

Grande G, Preston N (2011) The need for new perspectives on evaluation of palliative care Palliative Medicine, 25(8) pp. 737-738.

Oliviere D, Monroe B, Payne S (Eds) (2011) Death, Dying and Social Difference (Second Edition)

Payne S (2011) The Cancer Experiences Collaborative: Better research, by better researchers Palliative Medicine, 25(8) pp. 739-740.

Rolls L, Payne S, Brown J (2009) Narrative Methods in Supportive and Palliative Care

Bingley AF, Clark D (2008) Palliative care developments in the region represented by the Middle East Cancer Consortium: a review and comparative analysis

Butterworth C, Froggatt K, Vaughan S (2008) Ascertaining Wishes: A Good Practice Guide

O’Shea E, Murphy K, Larkin P, Payne S, Froggatt K, Casey D, Léime A, Keys M (2008) End-of-Life Care for Older People in Acute and Long-Stay Settings in Ireland

Addington-Hall J, Higginson I, Bruera E, Payne S (2007) Research Methods in Palliative Care

Grinyer A (2007) Young People Living with Cancer: Implications for Policy and Practice

Henry C, Seymour J (2007) Advance care planning: a guide for health and social care professionals

Payne S, Froggatt KA (2007) Bereavement and Loss: A Guide for Hospital Staff

Small N, Froggatt KA, Downs M (2007) Living and Dying with Dementia: Dialogues about Palliative Care

Walker J, Payne S, Smith P, Jarrett N (2007) Psychology for Nurses and the Caring Professions (3rd Edition)

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Bulletins

Payne S (2007) The research page: Supportive and Palliative Care – ‘Cancer Experiences’ Hospice Bulletin, 5(3): 3.

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External Newsletters

Bailey C (2007) The Cancer Experiences Research Collaborative (CECo): enhancing quality and increasing capacity in supportive and palliative care research CRUK PBSC Newsletter, June.

Bailey C (2007) Palliative care research takes a step forward MHLS Graduate School Newsletter, July.

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Book Chapters

Froggatt KA, Downs M, Small N (2008) Palliative Care for People with Dementia: Principles, Practice and Implications In: Woods R and Clare L (Eds) Handbook of the Clinical Psychology of Ageing (2nd Edition). Wiley: Chichester.

Payne S (2007) Resilient carers In: Monroe B and Oliviere D (Eds). Resilience in Palliative Care – Achievement in Adversity. Oxford University Press: Oxford.

Payne S (2007) Grounded Theory In: Lyons E and Coyle A (Eds) Analysing Qualitative Data in Psychology. Sage: London.

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Books

Grande G, Preston N (2011) The need for new perspectives on evaluation of palliative care. Sage Publications.

This Special Edition of Palliative Medicine considers different approaches to palliative care evaluation. It has its origin in a meeting organized in 2010 by the Capacity Building and Methodology Themes of the Cancer Experiences Collaborative (CECo)(see next editorial), reflecting an increasing recognition that the traditional randomized controlled trial (RCT) design does not always provide the best approach to much needed evaluation in palliative care.

There is a clear need to subject palliative care to comprehensive and robust evaluation to improve the evidence base for palliative care provision. 1 The RCT remains the gold standard for establishing the efficacy and effectiveness of interventions. However, there is a considerable lack of RCTs in palliative care, in particular trials using traditional RCT designs, i.e. where individual patients are randomized to treatment or control conditions. Where such trials are reported, they often provide inconclusive evidence due to challenges associated with conducting trials in palliative care. 2 At worst, adopting a research design that cannot be successfully implemented may appear to undermine palliative care by failing to show any significant benefits of such care; at best it represents a considerable use of time and resources in return for limited results.

We therefore need to take stock to ensure we use the best possible, yet feasible, methods in our repertoire for evaluation. In doing so we must not forget why the principles of the original RCT design are important in obtaining robust evidence for effectiveness, and retain these where possible.

Oliviere D, Monroe B, Payne S (Eds) (2011) Death, Dying and Social Difference (Second Edition). Oxford University Press.

The second edition of an edited book ‘Death, Dying and Social Difference’ published by Oxford University Press was launched at a special symposium at the Help the Hospices conference in Bournemouth on Wednesday 28th September. The book is edited by Dame Barbara Monroe, who holds an honorary Chair at the International Observatory on End of Life Care and Professor Sheila Payne, Director of the International Observatory on End of Life Care and David Oliviere. Many CECo members contributed chapters for the book.

Payne S (2011) The Cancer Experiences Collaborative: Better research, by better researchers. Sage Publications.

Care of the dying has traditionally been women’s work in the home and often nursing work in institutional settings, of lesser status and prestige than curing disease or controlling symptoms. As such it has arguably been hidden work, unseen, unrecognized and under-researched. In more recent times, with the development of palliative care as a medical specialty in some countries and palliative care nursing as a sub-discipline, there has been greater scrutiny of the evidence base for practice and a call for more rigorous research designs. While the focus has been predominantly upon improving the quality and quantity of clinical research, there is a growing acknowledgement that evaluation studies that investigate health care systems are also crucial.

Rolls L, Payne S, Brown J (2009) Narrative Methods in Supportive and Palliative Care. Observatory Publications.

This Annotated Bibliography is one outcome of the work of the Cancer Experiences Collaborative (CECo) Narrative Methods sub-theme.

Divided into four parts, it provides details of the two contexts of this work and discusses the field of Narrative as a form of inquiry, along with an annotated bibliography of a selection of material plus two reference lists.

Bingley AF, Clark D (2008) Palliative care developments in the region represented by the Middle East Cancer Consortium: a review and comparative analysis. National Cancer Institute: Bethesda, MD.

Butterworth C, Froggatt K, Vaughan S (2008) Ascertaining Wishes: A Good Practice Guide. Counsel and Care: London.

O’Shea E, Murphy K, Larkin P, Payne S, Froggatt K, Casey D, Léime A, Keys M (2008) End-of-Life Care for Older People in Acute and Long-Stay Settings in Ireland. Irish Hospice Foundation and National Council on Ageing and Older People: Dublin.

Addington-Hall J, Higginson I, Bruera E, Payne S (2007) Research Methods in Palliative Care. Oxford University Press: Oxford.

Grinyer A (2007) Young People Living with Cancer: Implications for Policy and Practice. Open University Press: Maidenhead.

Henry C, Seymour J (2007) Advance care planning: a guide for health and social care professionals. NHS End of Life Care Programme: Leicester.

Payne S, Froggatt KA (2007) Bereavement and Loss: A Guide for Hospital Staff. Help the Aged: London.

Small N, Froggatt KA, Downs M (2007) Living and Dying with Dementia: Dialogues about Palliative Care. Oxford University Press: Oxford.

Walker J, Payne S, Smith P, Jarrett N (2007) Psychology for Nurses and the Caring Professions (3rd Edition). Open University Press: Maidenhead.

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