Research and publications from the Palliative Care service

The Louis Dundas Centre for Children’s Palliative Care supports an integrated, multidisciplinary approach to research, education and clinical practice for children and young people with life-limiting conditions and life-threatening illnesses and their families.

Hosted by the University College London (UCL) Institute of Child Health (ICH) and Great Ormond Street Hospital (GOSH), the centre draws upon the full range of academic and clinical resources available at these institutions and welcomes collaboration with other researchers, clinicians and providers.

Research

Research proceeds from questions arising out of clinical experience, feeding into practice and policy. Attention is directed across four themes: illness experience, decision making about care and treatment, pain and symptom management and service delivery.

Documenting the illness experience

To improve palliative care, healthcare professionals need a solid understanding of the experiences of patients and their families, along with the social and cultural reality in which these experiences unfold. Children and families will be followed over the course of the illness, whether it is in hospital, at home, at clinic or in school. This research will form the basis for recommendations for policy and practice.

Decision making about care and treatment

With ever-increasing advances in medical care and research, the process of how care and treatment decisions are made becomes a larger feature in the lives of children and families, for instance:

  • What are the significant steps in the decision-making process?

  • What should the child or young person’s role be in that process?

  • How are parents and children best served by clinicians and other healthcare professionals as they consider the options for care and treatment?

The team will undertake real-time studies of patients from the outset of their treatment, moving beyond models of consent and assent to formulate an evidence base for how some of medicine’s most challenging decisions are made. Crucially, the studies undertaken will include the voices of children themselves.

Pain and symptom management

Of major concern to all involved in care and treatment for children and young people with life-limiting and life-threatening illness is adequate pain and symptom management. Working with the Pain Management team and the Pain Research Unit at the ICH, the Louis Dundas Centre for Children’s Palliative Care will launch a series of projects aimed at improving pain and symptom management.

Delivery of palliative care services

This portion of the research agenda will look to identify physical, social, psychological, economic or structural barriers to children and families receiving quality palliative care and what can be done to remove them. The team will undertake collaborative studies of specialist, hospital, community and hospice-based services across the UK. The results of these studies will be used to develop effective models of palliative care service delivery.

Current/recent projects

Optimising Parenteral Analgesia in Children with Life-limiting Conditions: Developing a Home Patient Controlled Analgesia (PCA) Service for Children and Young People with Life-limiting Illness. (2011) Rajapakse D, Bluebond-Langner M.

Grant from the Department of Health, England. This joint service development project with the pain team at GOSH will provide information on the feasibility and acceptability of using PCA in the home setting for children and young people with palliative care needs.

Advance Care Planning for Children and Young People with Life-Limiting Conditions and Life-Limiting Illness: Parents’ Experiences in Planning for their Child’s Care and Treatment. (2010-2012) Bluebond-Langner M, Craig F, Hemsley J, Jones L, Harrington J, Sterling C, Franck L, Beecham E, Kelly P.

This is a collaborative research project between the clinical and academic units of the Louis Dundas Centre, at GOSH and ICH, the Marie Curie Research Unit-UCL, Camden PCT and Palliative Care team and the Department of Family Health Nursing UCSF. Ethical approval has been obtained for the pilot work on this project. Data collection will be undertaken at the end of 2011.

Changing the Culture of Care in Tertiary Centres: Integrating Palliative Care Services into the Care and Treatment of Children with Life-limiting Conditions and Life-threatening Illness. (2010-2011) Craig F, Bluebond-Langner M.

Grant from the Department of Health, England. This service evaluation explored the potential for further integration of palliative care support for children and young people cared for at GOSH.

Improving Access to Spiritual Support for Children and Young People (CYP) with Life-limiting and Life-threatening Conditions, their Parents and Other Family Members: The Development of a Spiritual Support Network Across North Central London that is Sustainable and Accessible to Families from all Faith Backgrounds. (2010-2011) O’Gorman B, Craig F, Bluebond-Langner M.

Grant from the Department of Health, England. This project led by the Life-force team in North Central London, developed and evaluated a workshop for health care professionals and Faith Leaders to share knowledge and skills in supporting the spiritual needs of children, young people and families being cared for in the community.

Improving Access to Palliative Care Support for Babies and Families: Educational Program to Introduce Principles, Practices and Resources in Palliative Care Services in Neonatal Units Across Greater London. (2010-2011) Mancini A, Craig F, Bluebond-Langner M.

Grant from the Department of Health, England. This joint project with Chelsea and Westminster Hospital NHS Trust, provided education on palliative care to 21 neonatal units reaching over 300 neonatal staff in London. Evaluation of the education session demonstrated increased knowledge and confidence about making referrals to palliative care services.

Rapid Response for Home Care at End of Life: A Pilot Project in North East London. (2010-2011) Ellis P, Bluebond-Langner M.

Grant from the Department of Health, England. This project led by Richard House children’s hospice explored the creation of an out of hour’s home visiting service for children receiving end of life care. The evaluation of the pilot service examined the acceptability, feasibility and sustainability of the project.

Talking with Children with Cancer about their Disease and Treatment: a Prospective Study to Improve Practice. (2010-2011) Gibson F, Kelly D, Kumpunen S, Horstman M, Bluebond-Langner,M.

Grant from Olivia Hodson Foundation, England.

The Place of Care in the Face of Deterioration and Death in Children and Young People with Life-Limiting Conditions and Life-Threatening Illnesses: Systematic Review of the Literature and Directions for Further Study. (2010-2011) Bluebond-Langner M, Jones L, Beecham E, Kelly P.

Support for Program of Research on Decision Making for Children With Cancer When Standard Therapy Has Failed and Cure is Not Likely. (2000-2010) Bluebond-Langner M.

Johnson & Johnson Family of Companies. NJ, USA.

Research team

Professor Myra Bluebond-Langner (PhD, MA and BA)
True Colours Chair in Palliative Care for Children and Young People
Head of the Louis Dundas Centre for Children’s Palliative Care

Dr Ellen M. Henderson (BA, HDip, MSc, MBPsS, PhD)
Senior Research Associate

Emma Beecham (BSc, MRes)
Research Associate
Marie Curie Palliative Care Research Unit-UCL on secondment to Louis Dundas Centre

Jessica Pountney (MSc)
Research Assistant

Emma Day (BSc, MSc)
Lebedev PhD Student

Juliet Fulcher
PA to Professor Myra Bluebond-Langner and Unit Administrator

Contact the Academic Unit

Louis Dundas Centre for Children’s Palliative Care
UCL Institute of Child Health
30 Guildford Street
London WC1N 1EH

Tel: 020 7905 2781
Email: j.fulcher@ucl.ac.uk

Conferences and Publications

Crocker JC, Beecham E, Kelly P, Dinsdale AP, Hemsley J, Jones L, Bluebond-Langner M (December 2014) Inviting parents to take part in paediatric palliative care research: A mixed-methods examination of selection bias Palliative Medicine: e-published.

Laddie J, Craig F, Brierley J, Kelly P, Bluebond-Langner M (June 2014) Withdrawal of ventilatory support outside the intensive care unit: guidance for practice BMJ: e-published

UK Childhood Cancer Conference 2014, Birmingham (16 May 2014):
Palliative Care - presentation F.Craig

Annual Paediatric Palliative Care Symposium, Sydney (6 March 2014):
Experiences of a Children's Palliative Care Doctor in Kuwait - guest speaker R. McCulloch

Rajapakse D, Liossi C, Howard RF (February 2014) Presentation and management of chronic pain BMJ: e-published

Children's Palliative Care: Connecting Home, Hospital & Hospice, Conference in Dublin (29-30 November 2013):
Palliative care for young adults - presentation F.Craig
Decision making in palliative care - presentation F.Craig

4th APPM Paediatric Palliative Care study day, London (29 November 2013):
Nurses Forum J. Bayliss

9th International Symposium on Paediatric Pain conference, Stockholm (17-20 June 2013):
Development of a Homecare PCA (patient-controlled analgesia) service for children and young people in Paediatric Palliative Care (PPC) presentation - D. Rajapakse, and P. Kelly.
Education: Patient Controlled Analgesia for children with life-threatening conditions, in their home, hospice, or local hospital setting poster - T. Boggs, E. Rasdall, P. Kelly, D. Rajapakse, K. Fuller, and M. Bluebond-Langner

Bayliss J (June 2013) contributed to the shared care model on the Nursing and midwifery at the CfWI (Centre for Workforce Intelligence), Shift of Care web page

Twamley K, Craig F, Kelly P, Hollowell DR, Mendoza P, and Bluebond-Langner M (April 2013) Underlying barriers to referral to paediatric palliative care services: Knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom Journal of Child Health Care: e-published

Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L (Apr 2013) Preferred Place of Death for Children and Young People with Life-Limiting & Life-Threatening Conditions: A Systematic Review of the Literature and Recommendations for Future Inquiry and Policy Palliative Medicine: e-published.

Marie Curie Annual Palliative Care Research Conference (22 March 2013):
Factors Influencing Participation in Paediatric Palliative Care Research poster presentation - Crocker J, Beecham E, Kelly P, Hemsley J, Stirling C, Jones L, Bluebond-Langner M.
Place of Care Towards the End of Life in Children and Young People with Life-Threatening and Life-Limiting Conditions: A Literature Review poster presentation - Beecham E, Kelly P, Candy B, Jones L, Bluebond-Langner M.

Twamley K, Kelly P, Moss R, Mancini A, Craig C, Koh M, Polonsky R, Bluebond-Langner M. (Feb 2013) Palliative Care Education in Neonatal Units: Impact on Knowledge and AttitudesBMJ Supportive and Palliative Care

Craig F, Mancini A. Can we truly offer a choice of place of death in neonatal palliative care? (Apr 2013) Semin Fetal Neonatal Med;18(2):93-8. doi: 10.1016/j.siny.2012.10.008. Epub 2012 Dec 4.

Mancini A, Kelly P, Bluebond-Langner M. (April 2013) Training Neonatal Staff for the Future in Neonatal Palliative Care

Koh M, Craig F , Joanne Wolfe (2012) Care for Children with Advanced Cancer. M.G.C. Stevens: Cancer in Children (6th edition). Oxford, Oxford University Press

Kelly P, Kelly D (Dec 2012) Childhood cancer- parenting work for British Bangladeshi families during treatment: an ethnographic study International Journal of Nursing Studies

Koh M and Craig F (2011) Quality of life and aspects of diet and nutrition in dying children. V.R. Preedy: Diet and Nutrition in Palliative Care. US, CRC Press

Tietze AL, Blankenburg M, Hechler T, Michel E, Koh M, Schlüter B, Zernikow B (2011) Sleep disturbances in children with multiple disabilities. Sleep Med Rev 2011: e-published

Papadatou D, Bluebond-Langner M, & Goldman A (2011) The Team in Pediatric Palliative Care: Development, Organization, Functionality and Effectiveness. Joanne Wolfe, Pam Hinds and Barbara Sourkes: Textbook of Interdisciplinary Pediatric Palliative Care. US, Elsevier Publishers

Koh M, Mancini A, Craig F, Moss R, Twamley K, Kelly P , Bluebond-Langner M Poster presented at RCPCH Spring conference (07th April 2011): Improving access to palliative care services for palliative care babies and families. A joint project between Chelsea and Westminster Hospital, GOSH and ICH

Bluebond-Langner M, Belasco JB, DeMesquita Wander M (2010) "I want to live, until I don't want to live anymore": involving children with life-threatening and life-shortening illnesses in decision making about care and treatment.. Nurs Clin North Am 45 (3): 329-43

Koh M (2010) Provision of palliative care for children. MIMS Oncology and Palliative Care 4(4): 31-33

Rajapakse D (2010) Symptom Management during Chemotherapy. Paediatrics and Child Health 20: 3

Zernikow B, Michel E, Craig F, Anderson BJ (2009) Pediatric palliative care: use of opioids for the management of pain. Paediatr Drugs 11(2): 129-51

Craig F, Abu-Saad Huijer H, Benini F, Kuttner L, Wood C, Feraris PC, Zernikow B (2008) [IMPaCCT: standards of paediatric palliative care].. Schmerz 22 (4): 401-8

McCulloch R, Comac M, Craig F (2008) Paediatric palliative care: coming of age in oncology?. Eur J Cancer 44 (8): 1139-45

Chung CM, Berger Z, Rudd H (2008). Coping with post-traumatic stress disorder and co-morbidity after myocardial infarction. Comprehensive Psychiatry, 49, pp. 55-64

Chung MC, Berger Z, Jones R, & Rudd H (2008). Post-traumatic stress and co-morbidity following myocardial infarction among older patients: The role of coping. Ageing and Mental Health, 12, pp. 124-133

Chung CM, Berger Z, Rudd H (2007). Co-morbidity and personality traits in patients with different levels of post-traumatic stress disorder following myocardial infarction. Psychiatry Research, 152 pp 243-252

Jones R, Chung CM, Berger Z, Campbell J (2007). A survey of current prevalence of post-traumatic stress disorder (PTSD) in patients with previous myocardial infarction in general practice. British Journal of General Practice 57, pp 808-810