BackgroundAlthough continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it’s implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs’ missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014.MethodsThematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation.ResultsBetween 2010 and 2014, 3607 children and young adults (0–21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found.ConclusionPLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.
La maladie ou le handicap d’un enfant bouleverse tout le système familial, de manière potentiellement traumatique. La place des parents en pédiatrie n’est plus à démontrer, celle de la fratrie en revanche est encore trop peu reconnue. Celle-ci est pourtant témoin des souffrances familiales et peut présenter des symptômes. Elle peut également constituer une ressource pour elle-même, pour le système familial et pour les soignants. Chaque membre du sous-système fratrie (enfant/patient et ses frères et sœurs) doit être inclus dans la prise en charge et investi par les différents professionnels en fonction de ses besoins spécifiques. Un travail de prévention et de sensibilisation auprès des familles et des professionnels est nécessaire afin d’accueillir la fratrie, de l’écouter, de l’informer et de la soutenir. Cela se concrétise par des visites accompagnées dans les services intensifs, des ateliers réservés à la fratrie et une journée en famille afin de permettre, grâce à une contenance et un étayage groupal, la libération de la pensée, l’expression des émotions et du vécu.
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