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
The right of palliative care for the most vulnerable in Africa is everyone’s responsibility
Published January 2020 in the African Human Rights Law Journal
Authors: Emmanuel Kamonyo Sibomana, Desia Colgan, Nicola GunnClark
In sub-Saharan Africa over 80 per cent of needy children are unable to access palliative care services. Since the introduction of the Convention on the Rights of the Child and the African Charter on the Rights and Welfare of Children, the three countries selected for this study, South Africa, Uganda and Kenya, have committed themselves to protect and promote the rights of children. Within the broader framework of international human rights, countries are obligated to realise a child’s right to health and provide adequate health care. Yet, children living in these countries with life-threatening and life-limiting illnesses suffer from physical, psychological and emotional pain. The objective of the article is to focus on the plight of seriously ill children in sub-Saharan Africa. This includes highlighting their basic human right to paediatric palliative care and the challenges they encounter in receiving the necessary help. In examining a right to health it is understood that encapsulated within that right is the availability and access to palliative care for all who require such care. It is important for states to understand that realising universal health coverage is not possible unless existing legislative and social barriers, inadequate healthcare services and training of healthcare providers are addressed. In order to improve the monitoring and evaluation of needs and services, and remove the social, political and economic barriers, state involvement is necessary. The primary argument is that it is possible to successfully implement palliative care even in circumstances where resources are limited. The approach adopted calls for an increased understanding and the buy-in of representatives of government, civil society (international and national) and affected communities all working toward a common agenda and effectively utilising existing community resources.
Read more and download here.
An audit of paediatric pain prevalence, intensity, and treatment at a South African tertiary hospital
Published Nov-Dec 2019 in Pain Reports
Authors: Caridad Velazquez Cardona, Chantal Rajah, Youley Nosisi Mzoneli, Stefan Joerg Friedrichsdorf, Fiona Campbell, Carel Cairns, Reitze Nils Rodseth
Pain in paediatric inpatients is common, underrecognized, and undertreated in resource-rich countries. Little is known about the status of paediatric pain prevention and treatment in low- and middle-income countries. This audit aimed to describe the prevalence and severity of pain in paediatric patients at a tertiary hospital in South Africa.
Read the full report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903419/
Assessment of the Need for Palliative care for Children: Three Country Report: South Africa, Kenya and Zimbabwe
Authors: 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
Authors: 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
Authors: Dr Richard Harding, 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
Authors: 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
Authors: 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
Pain and Sedation Scales for Neonatal and Pediatric Patients in a Preverbal Stage of Development
A Systematic Review
Authors: Vito Giordano, Joy Edobor, Philipp Deindl
Clinicians should consider using scales that are validated for at least construct validity, internal consistency, and interrater reliability, combining this information with the population of interest and the construct the scale is intended to measure.
Learn more and download the review here
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.
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.
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.