There is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services. PC has been identified as important within the global health agenda e.g., within universal health coverage, and a recent Lancet commission report recognised the need for PPC. However, a variety of challenges have been identified to PPC development globally such as: access to treatment, access to medications such as oral morphine, opiophobia, a lack of trained health and social care professionals, a lack of PPC policies and a lack of awareness about PPC. These challenges can be overcome utilising a variety of strategies including advocacy and public awareness, education, access to medications, implementation and research. Examples will be discussed impacting on the provision of PPC in resource-poor settings. High-quality PPC service provision can be provided with resource-poor settings, and there is an urgent need to scale up affordable, accessible, and quality PPC services globally to ensure that all children needing palliative care can access it.
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 normal child is without dispute. The role and value of play increases proportionately when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child. This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. It will show how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play.
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.
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