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 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.

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.

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.

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.

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.