International Children's Palliative Care Research Articles

The Declaration on Palliative Care in a Pandemic: report of the African Ministers of Health Meeting and the 7th International African Palliative Care Conference, held from the 24th to 26th August 2022 in Kampala, Uganda and virtually.

The 7th International African Palliative Care Conference and the 4th African Ministers of Health Meeting were held in Kampala from the 24th to 26th August 2022. The theme of the conference - Palliative Care in a Pandemic - reflected the reality of palliative care provision on the continent, and the experience of patients and providers over the past 2 years. It was hosted by the African Palliative Care Association and the Worldwide Hospice Palliative Care Alliance with co-sponsors being the International Children's Palliative Care Network, the International Association of Hospice and Palliative Care, Global Partners in Care and Palliative care in Humanitarian Aid Situations and Emergencies. The conference was held in Kampala as a hybrid event, with a mix of in-person, pre-recorded and virtual presentations. The African Ministers of Health Meeting held on the 24th August was attended by delegates from 25 Ministries of Health, with 92 participants in-person and 122 attending virtually. Hosted by the Minister of State for Primary Health Care in Uganda, the participants at the meeting endorsed a Declaration on Palliative Care in a Pandemic. The main conference, held on the 25th and 26th August, was attended by 334 delegates from 40 countries, 199 (60%) of whom attended in-person. Key themes discussed throughout the conference included: contagious compassion; building a business case and evidence for palliative care in Africa; palliative care policy, funding and sustainability; the importance of collaboration and global partnerships; palliative care for all ages, children through to the elderly, and all conditions; the need to be innovative and creative, embracing technology; and a feeling of hopefulness in the future of palliative care in the region as we go forward together. The impact of the pandemic has been significant on everyone. Despite this, and the limitations imposed by the pandemic, the African palliative care community has come through it stronger, is committed to continuing the development of palliative care across the region, working together and is hopeful for the future.

Preschool Children's Emotional Understanding of Death: A Forgotten Dimension

Scientific evidence regarding children's understanding of the concept of death is scarce. This has recently been pointed out by the International Children's Palliative Care Network as a priority area of research. In particular, the avoidance of emotion in this area of research is an important shortcoming. This study aims to develop an in-depth view of the emotional dimension of the child's understanding of death, also seeking to relate it to the cognitive dimension. We interviewed children (three to six years old) using a book illustrating a hypothetical scenario in which a child faced the death of a relative. We asked questions to assess the cognitive subconcepts of death and the emotional dimension (what the child would feel and what parents should say). Of the 54 participants, the majority said that the child would feel sad (n = 46, 85%) and that parents should inform her/him (n = 47, 87%); these responses did not vary significantly with age. The cognitive understanding of the concept of death in children who reported sadness was significantly higher. Even the youngest children feel death, and it is not possible to disconnect cognitive and emotional understanding. Additionally, children should be informed in order to foster a proper and multidimensional elaboration of death. This study provides valuable information to health professionals and other interested adults about the way preschoolers position themselves in relation to death.

Inspiration, innovation and integration: highlights from the third ICPCN conference on children's palliative care, 30 May to 2 June 2018, Durban, South Africa.

The International Children’s Palliative Care Network (ICPCN) held its third international conference on children’s palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference—inspiration, innovation and integration—brought together 250 participants from 41 countries and was held in conjunction with local partners—Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. It built on national and global developments in palliative care such as its inclusion in Universal health coverage (UHC), the Lancet Commission report on pain and palliative care and the sustainable development goals (SDGs), and aimed to raise the profile of children’s palliative care in KwaZulu-Natal (KZN) and nationally. Seven pre-conference workshops were held prior to the conference on topics such as pain and symptom management, children’s palliative care within a humanitarian crisis, perinatal palliative care, research, developing programmes, ethical issues and difficult conversations in children’s palliative care. Delegates were welcomed in true Durban style at the welcome reception hosted by the City of Durban and uShaka Marine World. The opening plenary included entertainment from the Open Air School and Hillcrest Primary School, and inspirational talks from the Member of the Executive Council (MEC) for Health, a representative of the World Health Organization (WHO), the Chief Executive of ICPCN and the Noble Peace Prize Nominee Dr MR Rajagopal from Pallium India. Plenary sessions were interspersed throughout the conference with 56 oral concurrent presentations and workshops, six ‘Meet the expert sessions’ 100 poster presentations and the South African Premier of the film ‘Hippocratic: 18 Experiments in gently shaking the world’. There was a great feeling of networking and learning throughout the conference, with the conference being well evaluated, and an increase in the level of presentations and research from previous conferences demonstrating the steps that are being taken in children’s palliative care globally.

Increasing access to children's palliative care education through e-learning: a review of the ICPCN experience.

Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase access to CPC. A review of ICPCN's e-learning programmes was undertaken in April/May 2018. At the time of writing, there are seven courses available, with more scheduled to be released in the near future. All courses are available in English, with some available in other languages, including Mandarin, Czech and Dutch. Between May 2016 and April 2018, 1501 individuals accessed the courses from 96 countries (39% nurses, 28% doctors). English was the prevalent language used (74%), followed by Spanish (8.5%). To date, over 3106 participants have accessed the e-learning programme from 124 countries. An evaluation in 2015/16 found that >80% of respondents said the courses were clear, understandable, rated them highly and found them useful. Some 75% of respondents reported improved knowledge, skills and change in attitude, while 61% reported a change in practice. The ICPCN e-learning platform is an innovative way of improving knowledge and understanding of CPC, thereby increasing the accessibility and availability of CPC.

International Children's Palliative Care Network: A Global Action Network for Children With Life-Limiting Conditions

The International Children's Palliative Care Network (ICPCN) is a global network of individuals and organizations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish the ICPCN was born from the recognition of the gaps in service provision for children's palliative care and the need to collaborate, network, and share resources. Established in 2005 during a meeting in Seoul, South Korea, the ICPCN has developed over the years into an established network with a global membership. The history of the organization is described, including some of the key events since its inception. Working in collaboration with others, ICPCN has five key focus areas: Communication; Advocacy; Research; Education; and Strategic development, and is the only international charity working globally for the rights of children with palliative care needs. Activities in these areas are discussed, along with the inter-connection between the five areas. Without the ICPCN, palliative care for children would not have developed as far as it has over the years and the organization is committed to ongoing work in this area until all children requiring palliative care have access to quality services, wherever they live around the world.

Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis

ContextThe need for children's palliative care (CPC) globally is unknown. To understand the scope of the need and to advocate to meet it, more accurate estimates are needed. ObjectivesThe objective of this study was to create an accurate global estimate of the worldwide need for CPC based on a representative sample of countries from all regions of the world and all World Bank income groups. MethodsThis work builds on previously published methods developed by the International Children's Palliative Care Network, United Nations Children's Fund, and World Health Organization and tested in three African countries. The study used a cross-sectional design with quantitative data obtained from primary and secondary data sources. Estimation of the need used prevalence data from the Institute for Health Metrics and Evaluation, mortality data from the World Health Organization for the specific diseases known to require CPC, and Joint United Nations Programme on HIV/AIDS (UNAIDS) data on HIV prevalence. Representative data were analyzed for 23 countries representing 59.5% of the world's population. ResultsThe findings show estimated need for CPC ranged from almost 120 per 10,000 children in Zimbabwe to slightly more than 20 per 10,000 in the United Kingdom. Overall, among the over 21 million with conditions that will benefit annually from a palliative care approach, more than eight million need specialized CPC worldwide. ConclusionThe 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.

Priorities for global research into children's palliative care: results of an International Delphi Study.

BackgroundThere is an urgent need to develop an evidence base for children’s palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research.MethodThe International Children’s Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (n = 153 from round 1 and n = 95 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1 % round 1, 24.2 % round 2) followed by Europe.ResultsA list of 26 research areas reached consensus. The top five priorities were: Children’s understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children.ConclusionsInformation from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This provides a much needed starting place for the allocation of funds and building research infrastructure. Researchers working in CPC are in a unique position to collaborate and produce the evidence that is needed.

Little Stars

“Currently the prevailing view of ‘hospice’ as it relates to children is negative”, explains the production team behind the Little Stars project. “For many the word conjures up images of a death house—lonely, scary, full of suffering”. In partnership with the International Children's Palliative Care Network (ICPCN), Moonlight Movies hopes to “reframe the stereotype of ‘children's hospice and palliative care’, clearly showing that the discipline is focused on life, not death, delivering a service in the home (or a home-like environment) by a multidisciplinary team, focused on extending and enhancing life through wellness, relationships, community and love”. The Australian-based production company will release one short film every 2 weeks, 50 in total. Nine are already available online—the project launched at last year's Paediatric Palliative Care Congress in Rome. In April, 2015, an hour-long documentary will premiere on the Al-Jazeera Documentary Channel, and a global event is planned for later in the year, to mark Universal Children's Day.

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

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.

How Can We Improve Pain Control in Children over the World? Results of International Multiprofessional ICPCN Survey

Dear Editor: Pain control is the most prominent problem in children's palliative care, especially in developing countries. Many attempts have been made to improve this situation by different organisations including the World Health Organization (WHO) in 2012 (“WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses.”) While the intent of the WHO guidelines is clear, there are many local country-specified barriers to successful implementation of the recommendations. How can we improve pain control in children all over the world? In order to gain some understanding of different perspectives, the International Children's Palliative Care Network (ICPCN) initiated an International Multiprofessional Survey in 2012. The aim of the survey was to evaluate how ICPCN could help to improve pain control in children around the world. The ICPCN Scientific Committee convened a task force of 25 children's palliative care professionals from 15 countries representing all continents. This task force created a list of eight possible roles the ICPCN could play in improving pain management in children and these roles were described in the survey. Survey participants were …

Transforming children's palliative care through the International Children's Palliative Care Network

Transforming children's palliative care through the International Children's Palliative Care Network

First International Children's Palliative Care Network Conference

First International Children's Palliative Care Network Conference

Assessment of the need for palliative care for children in South Africa

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries' capacities to deliver children's palliative care (CPC). This report concerns the findings from South Africa. The study adopted a cross-sectional mixed-methods approach using both quantitative and qualitative data obtained from primary and secondary sources. CPC need was estimated using prevalence and mortality statistics. The response to the need and existing gaps were analysed using data obtained from a literature review, interviews with key persons, and survey data from service providers.The findings show very limited CPC service coverage for children in the public sector. In addition, services are mainly localised, with minimal reach. Less than 5% of the children needing care in South Africa are receiving it, with those receiving it being closer to the end of life. Barriers to the delivery of CPC include fear of opioid use, lack of education on CPC, lack of integration into the primary care system, lack of policies on CPC, and lack of community and health professional awareness of CPC needs and services. Estimating the 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.

Piloting of an e-learning programme on children's palliative care

BackgroundThe International Children's Palliative Care Network (ICPCN) has recognised the need to make training on children's palliative care (CPC) accessible and affordable to all who need it. A recent survey...

Education in children's palliative care across Europe and internationally

Ongoing education and training is essential in health care, particularly in palliative care, which is still expanding both in terms of its global reach and its scope. Children's palliative care (CPC) is a specialty in its own right, but one that is still relatively new, and so appropriate and ongoing education and training of CPC staff is especially important. However, such education and training is not always accessible to those who need it, and only recently have significant attempts been made to quantify the extent and nature of these deficiencies. This paper discusses CPC education and training from a European and global perspective, highlighting some of the principles and challenges. It also looks at the recent efforts of the European Association for Palliative Care and the International Children's Palliative Care Network to attain a clearer picture of the state of global CPC education, presenting some initial findings from their research and discussing preliminary recommendations and future directions.

ICPCN reaching out to the world through advocacy, networking, information sharing and research

In 2005, when the International Children's Palliative Care Network was first constituted, there was limited awareness of the status of palliative care for children internationally and what services there were...

Priorities for global research into children's palliative care: a Delphi study

ObjectivesThere is a need to develop an evidence base for children's palliative care globally. A review of children's palliative care in SSA highlighted a lack of evidence which can be...