Transforming children's palliative care-from ideas to action: highlights from the first ICPCN conference on children's palliative care.

Julia Downing ,Busisiwe Nkosi ,M Cardoz ,Joan Marston ,Sue Boucher ,Pradnya Talawadekar ,Barbara Steel ,Mary Ann Muckaden ,Prajakta Tilve

doi:10.3332/ecancer.2014.415

Julia Downing , Busisiwe Nkosi + Show 7 more

Open Access

https://doi.org/10.3332/ecancer.2014.415

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Abstract

The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children’s palliative care.

Highlights

The International Children’s Palliative Care Network held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, Mumbai, India
The newly published Global Atlas of Palliative Care at the End of Life [9], estimated that 6% of the global need for palliative care is in children (
The majority of children needing palliative care at the end of life have non-malignant diseases, with the Western Pacific and European regions having the highest percentage of children with cancer in need of palliative care at the end of life (14.4% and 12.7%, respectively)

Summary

Introduction

The International Children’s Palliative Care Network held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, Mumbai, India. She challenged participants, stating that children with palliative care needs are often too young, too sick, or too disabled, and parents are too tired and need their energy to care for their child and their family, so if we do not champion these children, who will? The interactive nature of the workshop was appreciated by participants, and the majority of participants felt that the workshop was appropriate to their practice and anticipated that their practice would change as a result of the workshop

Background to the conference

Findings

Conclusion