Guest Editors of the special issue of Paediatric Palliative Care, Professor Joanne Wolfe and Professor Myra Bluebond-Langner, invite contributions to this special issue of Palliative Medicine.
Palliative Medicine’s call for papers for a special issue in Paediatric Palliative Care is a unique opportunity – not to be missed. The call, from the journal with the highest impact factor in palliative care, signals recognition of a growing body of high-quality research worthy of the attention of those who do research and care for seriously ill children as well as for adults. It marks our coming of age, our entry, indeed our contribution to the science as well as to empirically based care of seriously ill children and their families.
Thinking back to the prior century, palliative care was primarily considered an approach to care for persons at end of life. And, without formalization of a subspecialty, there was little academic leadership to move the field forward. Currently, in many countries, palliative care has become a subspecialty in medicine, requiring formal training and certification, including in paediatrics. Other healthcare disciplines, such as nursing and psychology, have also embraced the need for greater investigation into the care of the seriously ill along the full course of the illness trajectory.
Yet, it remains difficult to conduct research in seriously ill children. While millions of children die annually, they present at various developmental stages with highly diverse illnesses and conditions, and are almost always cared for in the context of family, making research of all sorts – in pain, decision making, life course – that much more challenging. Notably, there are few formally trained paediatric palliative care (PPC) investigators, limited funding opportunities, and considerable gate-keeping by ethics approval committees and clinicians.
On the upside, several impactful strategies have moved the field forward. Recognizing the need for empirical research in paediatric palliative care and for the field to have a seat at the table of mainstream research in paediatrics and child health, True Colours Trust established the United Kingdom’s first Professorial Chair in Palliative Care for Children and Young People in 2008. The chair is currently held by Professor Bluebond-Langner; research across the UK serves to identify and fill gaps in knowledge as well as to bring policy and practice into better alignment with evidence. Around the same time, Drs. Joanne Wolfe and Chris Feudtner established Pediatric Palliative Care Research Network , an ‘open source’ research network, which primarily focuses on bringing PPC investigators together, and mentoring trainees and early career investigators. Any PPC investigator can join and the network hosts monthly videoconferences focusing on ‘Works in Progress’ and an annual face-to-face meeting for further networking opportunities. Initiatives such as these have contributed to an increase in trained PPC investigators and high-quality publications.
Through these collaborations and others, the field is making progress. We are looking forward to showcasing this progress in the Special Issue of Palliative Medicine and expect that the publication will set the stage for the next phase of PPC research.
CALL FOR PAPERS …
Find out more here. Deadline for submissions: March 29, 2019.
More about the authors . . .
Joanne Wolfe MD MPH is Professor of Pediatrics, Harvard Medical School,
Director of Palliative Care, Boston Children’s Hospital, Division Chief, Pediatric Palliative Care, Dana-Farber Cancer Institute, USA.
Contact Prof Wolfe by email.
Myra Bluebond-Langner, PhD, Hon. FRCPCH, is Professor and True Colours Chair in Palliative Care for Children and Young People, UCL Great Ormond Street Institute of Child Health, Louis Dundas Centre for Children’s Palliative CareUCL, SLMS Faculty of Population Health Sciences, London, UK.
Contact Prof Bluebond-Langner by mail.
Links and resources
Don’t miss the Global challenges in Paediatric Palliative Care: An EAPC Seminar at the 16th World Congress of the European Association for Palliative Care on 23 May 2019, Berlin, Germany. Register now and benefit from the Early Bird registration. (Early Bird registration closes 15 February 2019).