Research in Children’s Palliative Care

Limited research exists within the field of children’s palliative care, particularly as it relates to South Africa and southern Africa. Below we have listed some of the the research available, Journals that focus on children’s palliative care and  links to websites where further research can be found and downloaded.

If you have research you think would be of benefit to Patch members, please feel free to send information on the research to us at info@patchsa.org

RESEARCH



Assessment of the Need for Palliative care for Children: Three Country Report: South Africa, Kenya and Zimbabwe

Stephen R. Connor,PhD,  Chenjerai Sisimayi

Published in November 2013, the assessment was conducted in three sub-Saharan countries; Kenya, South Africa, and Zimbabwe. Its aim was to analyse existing secondary data on palliative care to estimate the palliative care need amongst children and explore with service providers the key gaps in the response. The research reveals that the need for pallaitive care for children is high in all the countries.

Download the PDF: Assessment-of-the-Need-for-Palliative-Care-for-Children.-Three-Country-Report-South-Africa-Kenya-and-Zimbabwe


Estimating the Global Need for Palliative Care for Children

Stephen R. Connor PhD, Julia Downing PhD,  Joan Marston RN

The estimation of need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage.

Download the Article: Estimating the Global Need for CPC – JPSM


The Lancet Commission on Global Access to Palliative Care and Pain Relief

The Lancet Commission on Global Access to Palliative Care and Pain Relief was the result of a three year project involving 61 co-authors from 25 countries. The authors developed an essential package of palliative care services – including medicines, equipment and staffing models – to be made available by health systems worldwide, and call for more balanced global policies to facilitate access to opioid analgesics to meet medical need, while limiting non-medical use. Although the Commission did not undertake a separate analysis for children, there are references to children throughout the report.

Read more on the ICPCN website and download the report.


The Status of Paediatric Palliative Care in Sub-Saharan Africa – An Appraisal

Dr Richard Haring, Professor Lorraine Sherr, Dr Rene Albertyn – July 2010

This timely report provides a thorough and systematic appraisal of the evidence of the need for, and reported evidence on, palliative care for children in sub-Saharan Africa, and makes a comprehensive series of recommendations for researchers, care providers, donors and policy-makers.

Download the research: The Status of Paediatric Palliative Care in sub-Saharan Africa_July 2010


Pediatric Palliative Care

Edited by Dr Stefan Friedrichsdorf, this special edition ‘Pediatric Palliative Care’ published in the Open Access Journal Children is a collation of 20 outstanding articles from many of the leading paediatric palliative care researchers and clinicians worldwide.

Download the book as a PDF:  Pediatric Palliative Care Book


The Role of Play in Children’s Palliative Care

Sue Boucher, Julia Downing PhD, Rise Shemilt

Play is the universal language of childhood and the time and opportunity to play is every child’s right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a orma child is without dispute. The role and value of play increase proportionately when a child is made more vulnerable through illness or disability. The paper outlines the role and value of play as an integral component in the provision of pallaitive care for children.

Download the article: The role of play in childrens palliative care


Children’s Palliative Care: Considerations for a physical therapeutic environment

Julia Downing, Joan Marston, and Edwina Fleming

It is important for those who are working to develop children’s palliative care services in different countries with different resources to consider the physical environment in which children are to be provided with care. This article reviews the need for planning considerations related to the physical environment and describes the implications for service delivery.

Download the article: Children’s Palliative Care – Considerations for a physical


JOURNALS



Synopsis

Synopsis is issued by the UK charity Together for Short Lives twice a year. It contains hundreds of articles drawn from as many medical, nursing and social care journals as possible. Synopsis  captures the key research relevant to children and young people’s pallaitive care.

Download the latest and previous editions from the Together for Short Lives website.


NHPCO Pediatric E-Journal

This theme based Paediatric E-Journal is produced by the Pediatric E-Journal Workgroup of the National Hospice and Palliative Care Organization (USA).

Visit the website to download present and past editions of the E-Journal.


USEFUL WEBSITES



Centre for Pediatric Pain Research

The Centre for Pediatric Pain Research is an international leader in children’s pain research based in Canada. Their web site provides an overview of their work, including current research activities at the Centre.

Visit the website 


PedPalASCNET

A Network for Accessible, Sustainable and Collaborative Research in Paediatric Palliative Care (PedPalASCNET) is a Canadian research network that engages in resource sharing, capacity building and knowledge translation.

Visit the website


Pediatric Palliative Care Research Network (PPCRN)

The Pediatric Palliative Care Research Network (PPCRN) is an interdisciplinary, multi-centre team of researchers and clinicians in the United States who are using research to improve the quality of care for children with life-threatening conditions and their families.

Visit the website