Research links

There is a growing body of research in paediatric palliative care. This page aims to provide links to research papers and abstracts that may be of interest to our membership. Please let us know about any relevant research that we may consider posting to this page.

Click here for a full list of ICPCN research publications.

Share your research with ICPCN

ICPCN’s mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledge.

ICPCN wants to help all agencies across the world to share their expertise in children’s palliative care. One of the key ways that we can do this is by sharing research, information and good practice.

Any organization working with, or with an interest in children’s palliative care can share their research, information and good practice with ICPCN.

All you have to do to share your research is to fill in a simple “research upload form” – telling us a few details about your organization and include a short abstract, plus a link to the full document if you choose to. We will then share your research with the ICPCN network.

Pediatric Palliative Care 

Pediatric Palliative Care Book

The special edition “Pediatric Palliative Care” in Children (
children/special_issues/palliative_care) has collated 20 outstanding articles from many of the leading
pediatric palliative care researchers and clinicians worldwide allowing us to present an overview of
advances, research, and challenges in pediatric palliative care (PPC).

This issue has been edited by Dr Stefan Friedrichsdorf

Cancer and Children’s Palliative Care
Best practices for pediatric palliative cancer care: a primer for clinical providers

This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Topics include: providing pain and symptom management; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.

Palliative Care for Children
Palliative Care for Children – American Academy of Pediatrics

This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified. The American Academy of Pediatrics recommends the development and broad availability of pediatric palliative care services based on child-specific guidelines and standards. Such services will require widely distributed and effective palliative care education of pediatric health care professionals. The Academy offers guidance on responding to requests for hastening death, but does not support the practice of physician-assisted suicide or euthanasia for children.

Standards for the Psychosocial Care of Children with Cancer and Their Families: An Introduction to the Special Issue
Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue


  1. Lori Wiener PhD, DCSW1,*,
  2. Anne E. Kazak PhD, ABPP2,
  3. Robert B. Noll PhD3,
  4. Andrea Farkas Patenaude PhD4 and
  5. Mary Jo Kupst PhD5

Pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders and developed evidence-based standards for pediatric psychosocial care. Given the breadth of research evidence and traditions of clinical care, 15 standards were derived. Each standard is based on a systematic review of relevant literature and used the AGREE II process to evaluate the quality of the evidence. This article describes the methods used to develop the standards and introduces the 15 articles included in this special issue. Established standards help ensure that all children with cancer and their families receive essential psychosocial care. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.

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