The Palliative Care Group brings together academic and clinical researchers from across Kent and Medway with interests in palliative and end of life care who are research active or developing their research skills. The group aims to support and develop palliative care research in the local region through collaborative partnerships between these academics and clinicians leading on to applications for external funding for research projects.
Palliative care is an approach which aims to enhance the quality of life of patients and their families who are faced with life-limiting illness through the assessment and treatment of physical, psychosocial, and spiritual problems. Palliative care in the UK is often provided by specialists based in hospices and hospitals, but is often supported by primary, secondary and tertiary care providers, community care, and social services.
The group is hosted by CHSS with support from Pilgrims Hospices in east Kent.
Active members of the group include clinicians and academics from the following organisations:
Contact for further information;
Charlotte Brigden, Research Facilitator, Pilgrims Hospices in east Kent
Email: charlotte.brigden@pilgrimshospices.org
Tel: 01227 812625
Dr Claire Butler, Consultant and clinical lead, Medway Community Healthcare
Dr Declan Cawley, Consultant in Palliative Medicine and Research Fellow
Dr Pauline Dand, Consultant in Palliative Medicine, Pilgrims Hospices
Julie Hedayioglu, Research Facilitator, , Kent Community Health NHS Trust
Laura Holdsworth, Qualitative Research Associate, Stanford University (virtual member)
Mary Kirk, Nurse Consultant for End of Life Care, Kent Community Health NHS Trust
Joanne Leung, Research Practitioner, Ellenor Hospice
Dr Stephen O’Connor, Reader in Palliative and End of Life Care, Canterbury Christchurch University.
Dr David Oliver, Honorary Reader at Tizard Centre, University of Kent
Dr Katie Taylor, Consultant in Palliative Care, Hospice in the Weald
Dr Andrew Thorns, Consultant in Palliative Medicine, Medical Director, Pilgrims Hospices
Tricia Wilcocks, Head of Care, ellenor Hospice
Publications of members (since 2010 – authors in bold)
2015
Gage H, Holdsworth LM, Flannery C, Williams P and Butler C. Impact of a hospice rapid response service on preferred place of death, and costs. BMC Palliative Care (2015) 14:75 DOI 10.1186/s12904-015-0065-4
Holdsworth LM Bereaved carers’ accounts of the end of life and the role of care providers in a ‘good death’: A qualitative study. Palliat Med. 2015 May 5. pii: 0269216315584865. [Epub ahead of print]
Holdsworth LM, Butler C, Gage H, Coulton S, King A Evaluation of Pilgrims Hospices Rapid Response Hospice At Home Service: Summary of findings. March 2015 CHSS report
Holdsworth LM, Gage H, Coulton S, King A, Butler C. A quasi-experimental controlled evaluation of the impact of a hospice rapid response community service for end-of-life care on achievement of preferred place of death. Palliative Medicine 1-9 DOI: 10.1177/0269216315582124
Mckean E, Butler C, Brigden C. Hospice Facilitation of training EKHUFT Healthcare Professionals in End of Life Care Discussions and Planning. Project Report July 2015. Pilgrims Hospices in east Kent, Canterbury
Mckean E, Butler C, Brigden C. Training east kent healthcare professionals in end-of-life care discussions and planning: a hospice facilitation intervention. BMJ Supportive & Palliative Care November 2015 (5) supplement 3. 10.1136/bmjspcare-2015-001026.65
Nixon I, Popkiewicz F, Banerjee S, Vincent-Smith L, Oliver D. Using a joint approach to non-invasive ventilation in motor neurone disease. Eur J Pall Care 2015; 22: 182-184.
O’Connor, S.J., Manship, S., Jeffreys, W., Tung, M.Y., Navaratne, L., Hembrom, R., Khan, F., Famechon, M., Trouillet. H., Lancel, F., Lorenzo, P., Schmit, J.L. (2015) Targeting late diagnosis of HIV in Kent, Medway and Picardy: Evaluation of interventions in the Anglo-French IMPRESS Health 2 (Interreg IVA Channel Programme) Project 4282. Canterbury, Canterbury Christ Church University, ISBN: 978-1-909067-46-2.
O’Connor, S.J., Clift, S., Diouf, M., Lorenzo, P., Manship, S., Trouillet, H. and Schmit, J.L. (2015) Phase 1 Anglo-French Report on the IMPRESS Health 2 (Interreg IVA Channel Programme Project) 4282: Understanding factors behind the late testing and diagnosis of HIV. Canterbury, Canterbury Christ Church University, ISBN: 978-1-909067-37-0.
O’Connor, S.J., Manship, S., Jeffreys, W., Tung, M.Y., Navaratne, L., Hembrom, R., Khan, F., Famechon, M., Trouillet. H., Lancel, F., Lorenzo, P., Schmit, J.L. (2015) Résoudre le problème du diagnostic tardif du VIH dans le Kent, à Medway et en Picardie: Évaluation des interventions du projet anglo-français IMPRESS Health 2 (Interreg IVA Channel Programme) Project 4282. Canterbury, Canterbury Christ Church University.
O’Connor, S.J., Hart, M. and Manship, S. (2015) Understanding factors behind the late testing and diagnosis of HIV: UK results from the IMPRESS Health 2 study. Published abstract. HIV Medicine, 16(Suppl, 2):53-54. (IF 3.99).
Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2015; doi:10.1111/ene.12889
Oliver, T.J. and O’Connor, S.J. (2015) General nurses’ perceptions and experiences of factors which facilitate ‘good deaths’ in acute hospital settings. Nursing Times 111(21)24-27.
Phelps K, Regen E, Oliver D, McDermott C, Faull C. Withdrawal of ventilation at the patient’s request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK. BMJ Supp Pall Care 2015; doi: 10.1136/bmjspcare-2014-000826.
Smith, T., Stankunas, M., Czabanowska, K., de Jong, N., O’Connor, S.J. and Fowler-Davis, S. (2015) Principles of all-inclusive public health: developing a public health leadership curriculum. Public Health, doi:10.1016/j.puhe.2014.12.001 (IF 1.475).
Tuffrey-Wijne I, McLaughlin D, Curfs L, Dusart A, Hoenger C, McEnhill L, Read S, Ryan K, Satge D, Strasser B, Westergard B, Oliver D. Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care (EAPC). Pall Med 2015.DOI: 10.1177/0269216315600993
Veronese S, Gallo G, Valle A, Cugno C, Chio A, Calvo A, Rivoiro C, Oliver DJ. The palliative care needs of people severely affected by neurodegenerative disorders: a qualitative study. Prog Pall care 2015; DOI: http://dx.doi.org/10.1179/1743291X15Y.0000000007
Watermeyer TJ, Brown RG, Sidle KCL, Oliver DJ, Allen C, Karlsson J, Ellis CM, Shaw CE, Al-Chalabi A, Goldstein LH. Executive dysfunction predicts social cognition impairment in mayotrophic lateral sclerosis. J Neurol. 2015; DOI 10.1007/s00415-015-7761-0
Watermeyer TJ, Brown RG, Sidle KCL, Oliver DJ, Allen C, Karlsson J, Ellis CM, Shaw CE, Al-Chalabi A, Goldstein LH. Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis. ALS and FTD 2015:
2014
Faull C, Rowe Haynes C, Oliver D. issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study. BMJ Supp Pall Care 2014; 4:43-49.
Hadjiphilippou, S, Odogwu S, Dand P. Doctors’ attitudes towards prescribing opioids for refractory dyspnoea: a single-centred study BMJ Supportive & Palliative Care 2014;0:1–3.
O’Connor, S.J., Manship, S., Hart, M., Tudor, F., and Clift, S. (2014) Phase 1 research report on the IMPRESS Health 2 (Interreg IVA Channel Programme Project) 4282: Understanding factors behind the late testing and diagnosis of HIV. Canterbury, Canterbury Christ Church University, ISBN: 978-1-909067-31-8.
Oliver D, Borasio GD, Johnston W. (eds). Palliative care in ALS – from diagnosis to bereavement. 3rd edition. Oxford University Press, 2014
Oliver D. Reflections on neurological palliative care – editorial. European Journal of Palliative Care 2014; 21:2.
Oliver D. Palliative care for people with progressive neurological disease: what is the role? Journal of Palliative Care 2014; 30: 298-301.
Veronese S, Valle A, Chio A, Calvo A, Oliver D. the last months of life of people with amyotrophic lateral sclerosis in mechanical invasive ventilation: a qualitative study. ALS and FTD 2014: 15:499-504.
Veronese S, Gallo G, Valle A, Cugno C, Chio A, Calvo A, Cavalla P, Zibetti M, Rivoiro C, Oliver DJ. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: Ne-PAL, a pilot randomized controlled study. BMJ Supp and Pall Care 2015; ):1-9. Doi:10.1136/bmjspcare-2014-000788
2013
Butler C, Holdsworth L Setting up a new evidence-based hospice-at-home service in England. International Journal of Palliative Nursing 2013;19(7):355-359.
Cawley D, Billings J, Oliver D, Kendall M, Pinnock H. potential triggers for the holistic assessment of people with severe COPD: analysis of multiperspective, serial qualitative interviews. BMJ Supp Pall Care 2014; ):1-9.doi:10.1136/bmjspcare-2013-000629.
Hart, M. and O’Connor S.J. (2013) Final report of the Maidstone area Six Steps End of Life Care Programme prepared for the West Kent Clinical Commissioning Group. Canterbury, Canterbury Christ Church University, ISBN: 978-1-909067-22-6.
Martin S, Oliver D, Hussain J. Time of death and presence of family at death in a UK hospice. Eur J Pall Care 2013; 20: 223-225.
O’Connor, S.J. (2013) A new year and a bright hope for personalised medicine, but what about the quality of cancer patient care? European Journal of Cancer Care, 22:1-2. (IF 1.171)
Oliver D. From the Budapest Commitments to the Prague Charter: paving the way for palliative care development. Eur J Pall Care. 2013; 20: 110-111.
Oliver D. The issues of end of life care planning – the final stages. Amyotroph Lateral Scler and other MND 2013; 14 (Suppl 2): 18.
Oliver D, Jezek D. Palliative care education in Zagreb – an assessment of the effectiveness of an undergraduate course. Croat Med J 2013; 54: 212-3.
Oliver D, Faull C. Non-invasive ventilation in amyotrophic lateral sclerosis/motor neuron disease. Minerva Pneumologica 2013; 52: 27-38
Oliver D, Aoun S. What palliative care can do for motor neurone disease patients and their families. Eur J Pall care 2013; 20: 286-289.
Ruffell TO, Martin NH, Janssen A, Wijesekera L, Knights C, Burman R, Oliver DJ, AL-Chalabi A, Goldstein LH. Healthcare Professionals’ Views on the Provision of Gastrostomy and Noninvasive Ventilation to Amyothrophic Lateral Sclerosis Patients in England, Wales, and Northern Ireland. Journal of Palliative Care 2013; 29:225-231
Veronese S. Oliver D. Palliative care for people with neurodegenerative conditions. 2013. Saarbrucken. LAP Lambert Academic publishing.
Wheelwright, S., Darlington, A.S., Fitzsimmons, D., Fayers, P., Arraras, J.I., Bonnetain, F., Brain, E., Bredart, A., Chie, W.C., Giesinger, J., Hammerlid, E., O’Connor, S.J., Oerlemans, S., Pallis, A., Reed, M., Singhal, N., Vassiliou, V., Young, T. and Johnson, C. on behalf of the EORTC Quality of Life Group (2013) International validation of the EORTC QLQ-ELD14 questionnaire for assessment of health related quality of life in elderly patients with cancer. British Journal of Cancer, 109(4):852-858 (IF 5.08).
2012
Butler C, Holdsworth LM, Coulton S, Gage H Evaluation of a hospice rapid response community service: a controlled evaluation BMC Palliative Care 2012;11:11
Cawley D and Pinnock, H. Palliative care in Chronic Obstructive Pulmonary Disease European Respiratory Journal March 2012
Foley P, Hampton J, Hampton A, Hampton R, Olesky D, Oliver D, Weller BJ. Lesley’s story: a case report and discussion of challenges faced in end-of-life care for progressive neurological disease. Practical Neurology 2012; 12: 244-248.
Gouveia Melo C, Oliver D. Assessing Burnout in Portuguese Health Care Workers who Care for the Dying: Validity and Reliability of a Burnout Scale Using Exploratory Factor Analysis
Psychology, Community & Health 2012; 1:257-272
Holdsworth LM, Gage H, Coulton S, King A, Butler C. A quasi-experimental controlled evaluation of the impact of a hospice rapid response community service for end-of-life care on achievement of preferred place of death.
O’Connor, S.J. (2012) Developing a social constructivist model of nursing’s pedagogic practice using Bernstein’s educational theories. Chapter 4 in: Cook, V., Daly, C. and Newman, M. (Eds) Socio-cultural Perspectives on Work Based Learning in Clinical Practice. Oxford: Radcliffe Publishing, pp65-84
O’Connor, S.J. (2012) Peer review: problem or solution in relation to publication bias, transparency and the internationalisation of scientific research outputs? European Journal of Cancer Care, 21:701-702. (IF 1.171)
O’Connor, S.J. (2012) Going for gold: redefining the nature of the research dissemination process. European Journal of Cancer Care, 21:421-423. (IF 1.171)
O’Connor, S.J. (2012) Is it time to think about palliative care? European Journal of Cancer Care, 21:281-282. (IF 1.171)
O’Connor, S.J. (2012) Welfare reform and cancer survivorship: why means testing the benefits of cancer survivors unable to work is inimical to the moral, ethical and cultural competence of a modern society. European Journal of Cancer Care, 21:41-42. (IF 1.171)
O’Connor, S.J. (2012) On the dangers of methodolatry, moral hazard and myopia in research. European Journal of Cancer Care, 21:1-2. (IF 1.171)
Oliver D (Editor). End of Life Care in Neurological Disease. London. Springer 2012
Oliver D. Palliative Care for people with progressive neurological disorders. In: Faull C, de Caestecker, Nicholson A, Black F (Eds). Handbook of Palliative Care 3rd Edition 2012 New Jersey Wiley-Blackwell
Subramaniam S, Thorns A, Ridout M, Thirukkumaran T and Osborne R Accuracy of prognosis prediction by PPI in hospice inpatients with cancer: a multi-centre prospective study BMJ Support Palliat Care doi:10.1136/bmjspcare-2012-000239
2011
Cawley D, Mitchell K. Medical emergencies, hospice vs. hospital: who wins. European Journal of Palliative Care 2011; 17(6):
Cawley D, Waterman D, Roberts D, Caress AL. A qualitative study exploring perceptions and experiences of patients and clinicians of Palliative Medicine Outpatient Clinics in different settings Palliative Medicine. 2011 vol. 25 no. 1 52-61
de Jong, N., O’Connor, S.J., Tan, F.E.S. , and Verstegen, D.M.L. (2011) A comparison of face-to-face problem-based learning (PBL) and online asynchronous PBL tutorial groups in a public health masters programme at Maastricht University. Abstract 02.2, Computers and Learning (CAL11) Conference, Manchester, UK, 13th-15th April, 2011. http://elsevier.conference-services.net/resources/247/2253/pdf/CALX2011_0129.pdf
Gouveia Melo C, Oliver D. Can addressing death anxiety reduce health care workers’ burnout and improve patient care? Journal of Palliative Care 2011; 27: 287-95.
Holdsworth, L. and King, A. (2011). Preferences for end of life: views of hospice patients, family carers, and community nurse specialists. International Journal of Palliative Nursing 17:251-255.
Lynch, J., Saunders, Y., Goodhart, F., O’Connor, S.J. (2011) Screening for psychological distress in patients with lung cancer: results of a clinical audit evaluating the use of the Patient Distress Thermometer. Supportive Care in Cancer, 19:193-202. (IF 2.058)
McCartney A, Butler C, Acreman, S. Exploring access to rehabilitation services from allied health professionals for patients with primary high-grade brain tumours. Palliative Medicine 2011; 25(8):788-796.
O’Connor, S.J. (2011) Review of the incidence, prevalence, mortality and causative factors for lung cancer in Europe. European Journal of Cancer, 47 (Supplement 3): S346-347. (IF 4.944)
O’Connor, S.J. (2011) David versus Goliath. Branding, intellectual property rights and the ‘nanny state’: why Australia has to win its trial of strength against the tobacco giants. European Journal of Cancer Care, 20:561-562 (IF 1.138)
O’Connor, S.J. (2011) Context is everything: the role of auto-ethnography, reflexivity and self-critique in establishing the credibility of qualitative research findings. European Journal of Cancer Care, 20:421-423. (IF 1.138)
O’Connor, S.J. (2011) Prevention is better than cure and collaboration better than insularity: reasons why oncologists should embrace the international, public health and care of the elderly agendas in their research activities. European Journal of Cancer Care, 20: 283-285. (IF 1.138)
O’Connor, S.J. (2011) Listening to patients: the best way to improve the quality of cancer care and survivorship. European Journal of Cancer Care, 20:141-143. (IF 1.138)
Oliver D, Campbell C, Sykes N, Tallon C, Edwards A. Decision-Making for Gastrostomy and Ventilatory Support for People with Motor Neurone Disease Journal of Palliative Care 2011; 27(3): 198-201
Oliver D, Udoma M. Improving quality of life in patients with advanced motor neurone disease
European Journal of Palliative Care 2011, 18:214-7
Oliver D, Olupitan D, Oyebola F. Developing palliative care in Nigeria – a collaborative approach. European Journal of Palliative Care 2011; 18: 298-301
Thorns A, Cawley D Palliative care in people with chronic obstructive pulmonary disease.BMJ. 2011 Jan 24;342:d106.
2010
Dand P and Sakel, M. The management of drooling in motor neurone disease. International Journal of Palliative Nursing . Nov2010, Vol. 16 Issue 11, p560-564.
Holdsworth, L. and King, A. (2010). Developing a Patient Preference Questionnaire for Place of Care When Dying Phase 2: Nursing home, primary care and secondary care settings. Centre for Health Services Studies.
Johnson, C., Fitzsimmons, D., Gilberta, J., Arrarras, J.I.., Hammerlid, E., Bredart, A., Ozmen, A., Dilektasli, E., Coolbrandt, A., Kenis, C., Young, T., Chow, E., Venkitaraman, R., Howse, F., George, S., O’Connor, S.J., Yadegarfar, G. on behalf of the EORTC Quality of Life Group. (2010) Development of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Module for older people with cancer: the EORTC QLQ-ELD15. European Journal of Cancer, 46:2242-2252. (IF 4.944)
O’Connor, S.J. (2010) Continuing disparities in survival rates between younger and older cancer patients in Europe. Might oral chemotherapy provide one solution to the problem? European Journal of Cancer Care, 19:421-423. (IF 1.138)
O’Connor, S.J. (2010) What do duplicate publications; self-plagiarism and the monotony of endless descriptive studies signify: publication pressures or simply a collective lack of imagination? European Journal of Cancer Care, 18: 281-283. (IF 1.138)
O’Connor, S.J. (2010) Citations, impact factors and shady publication practices: how should the lasting clinical and social value of research really be measured? European Journal of Cancer Care, 19:141-143. (IF 1.138)
Taylor N, Fisher S, Butler C. Benchmarking In-patient Medication Errors in Specialist Palliative Care. Palliative Medicine 2010;24(3):350-1.
Thorns A Ethical and legal issues in end-of-life care. Clin Med. 2010 Jun;10(3):282-5
Current Projects and Grants
Contact for further information
Charlotte Brigden, Research Facilitator, Pilgrims Hospices in east Kent
Email: Charlotte.Brigden@pilgrimshospices.org tel: 01227 812625
Completed Projects and PhDs
Contact for further information
Charlotte Brigden, Research Facilitator, Pilgrims Hospices in east Kent
Email: Charlotte.Brigden@pilgrimshospices.org tel: 01227 812625