Chair in Palliative Care for Children and Young People
Professor Myra Bluebond-Langner was appointed as the True Colours Chair in Palliative Care for Children and Young People in 2010, based at the Louis Dundas Centre for Children’s Palliative Care and jointly hosted by Great Ormond Street Hospital (GOSH) and the UCL Institute of Child Health. Professor Myra Bluebond-Langner is the UK’s first professorial chair in children’s palliative care.
Drawing on the full range of academic and clinical resources at UCL Institute of Child Health and GOSH, and in collaboration with other researchers, clinicians and providers, Professor Bluebond-Langner is leading the development of high quality multidisciplinary collaborative studies which will inform practice, and the development and implementation of educational programs that will meet the needs of professionals serving children and young people with life limiting-conditions and life-threatening illnesses and their families. As Professor Bluebond-Langner notes, “Our goal is to make a tangible difference in the lives of children with life-limiting conditions and life-threatening illnesses and their families through an integrated programme of research, practice, education and policy.”
Five years into her tenure, Professor Bluebond-Langner’s programme of research has at its core the reduction of suffering. Knowing that suffering can be both derived from and exacerbated by any number of factors in any number of areas investigations are spread over four domains (1) the illness experience (2) decision making about care and treatment (3) pain and symptom management (4) service development and delivery.
A number of research projects are in progress including studies of (1) parents’ understanding and experiences of advanced care planning; (2) parents’ understanding of their child’s prognosis when standard therapy has failed and cure not likely; (3) decision making for children with HRBT (high risk brain tumours), involving interactions among patients, parents and clinicians over the entire course of their illness; (4) study of the role of adolescents with haematological malignancies in decision making about care and treatment; (5) young people with cancers’ use of the Internet; (6) effective methods for young children’s knowledge and views of cancer treatment; (7) experience of health care professionals (HCPs) in dealing with spiritual issues in the community; (8) attitudes and knowledge of palliative care amongst health care professionals; and (9) education and support needs of teachers and schools with children with life-limiting conditions and life-threatening illnesses, and their siblings.
Systematic reviews are also being conducted including a recent Cochrane review of pharmacological interventions for pain in children and adolescents with life-limiting illnesses. In addition, literature reviews are being carried out to inform clinical practice and education, on topics ranging from symptom management for children with cancer and respiratory management of children with neuromuscular weakness, to reviews of management of chronic pain.
A number of case series reviews have been undertaken, including reviews leading to recommendations for withdrawal of ventilator support outside the ICU, and the use of clinical records for research and clinical management. Work on parents’ and children’s preference in place of death at GOSH, is both a response to a systematic review on preference in the place of death and the outcomes work of the GOSH Foundation Trust.
As part of the development of a research ethos, the team has adopted a position where nothing it does or contemplates in service development and delivery goes forward without study/evaluation. To that end, the team has initiated mixed method processual evaluations of development and implementation of outpatient clinics at GOSH and in two children’s hospices in London; utilisation of PCA (pain controlled analgesia) in the home and hospice; and massage therapy in children with cancer.
Similarly with education, the team has conducted and published evaluations of educational initiatives such as locally delivered workshops on neonatal and palliative care in neonatal units across London, and is currently evaluating a foundation course in paediatric palliative care.
Cutting across all initiatives is work on reducing barriers to research access and participation and developing effective approaches to ensure the development of a robust evidence base for policy and practice. An article has recently been published on recruitment of patients to paediatric palliative research and the impact of low invitation rates on sample bias, and a UK wide survey of academics and clinicians’ experiences in recruitment of children with life-limiting conditions and life-threatening illnesses and their families to research is being conducted.
Professor Bluebond-Langner is well aware of the barriers and challenges as she pursues this agenda. But as she states “ We have a rather ambitious agenda, but we are confident we can achieve it with a little help from our friends. It is going to take a bit from each of us if we are to deliver on our mission – the highest standard, the highest quality of care for children and families.”
A list of selected publications (2010 – 2015) can be accessed by clicking here