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Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium
2019, HE Léonard de VinciArticle scientifiquePaediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. Objectives: The aim of the study was to identify, over a 5-year period (2010–2014), the number of children ... -
The Belgian euthanasia law and its impact on the practises of Belgian paediatric palliative care teams
2018, HE Léonard de VinciArticle scientifiqueThis commentary describes the effect of the Belgian euthanasia law extended to children law on the practices of two paediatric liaison care teams in Belgium (one in Flanders, one in Wallonia). Ethical challenges are discussed based on clinical experiences of those teams, who affirm that in 25 years of practice, they were never confronted with a child requesting euthanasia. -
Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014
2018, HE Léonard de VinciArticle scientifiqueBACKGROUND: Although 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 ... -
Does the Belgian law legalising euthanasia for minors really address the needs of life-limited children?
2014, HE Léonard de VinciArticle scientifiqueThe Belgian law on euthanasia for adults was approved in 2002, the same year as laws on patients’ rights and on palliative care, which mostly address the needs of adults. On 13 February 2014, an extension of the euthanasia law that decriminalises euthanasia for children, without age restriction, was approved by the House of Representatives in Brussels (Belgian Ministry of Justice, 2014). In the ... -
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study
2020, HE Léonard de VinciArticle scientifiqueObjective: To assess the face and content validity, acceptability and feasibility of a French version of the Children’s Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured ... -
Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review
2019, HE Léonard de VinciArticle scientifiquePediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. To review the instruments used to assess the impact of PPC interventions. Five databases (Embase, Scopus, The Cochrane Library, PsychInfo, Medline) were searched. Inclusion criteria were as follows: ... -
La liaison pédiatrique. Un modèle original de soins palliatifs pédiatriques transmuraux
2020, HE Léonard de VinciLivre/Ouvrage ou monographie[Chapitre dans Manuel de Soins Palliatifs. 5ème édition. Le Berre R. (Coord.) Ed.Dunod. 2020.] Les soins palliatifs pédiatriques sont des soins actifs, holistiques, compatibles avec des soins curatifs destinés à des enfants ayant des maladies limitant ou menaçant leur vie, prodigués en équipe interdisciplinaire et ayant comme objectif essentiel de promouvoir la qualité de vie des enfants dans une ... -
La qualité de vie des enfants en contexte palliatif, comment la documenter? Peut-on la mesurer?
2019, HE Léonard de VinciArticle scientifiqueLes soins palliatifs pédiatriques visent à promouvoir la meilleure qualité de vie des enfants. Cependant, mesurer cette qualité de vie, qui est un construit hautement subjectif et multidimensionnel, est complexe car il faut tenir compte de l’hétérogénéité des maladies, des âges, des trajectoires de soins ainsi que des types d’interventions. Actuellement, la plupart des instruments de mesure ne ... -
Please Do Whatever It Takes to End Our Daughter's Suffering!
2015, HE Léonard de VinciArticle scientifiqueWhat is the best way to care for a child with severe neurologic impairment who seems to be dying and is in intractable pain? Can we give sedation as we remove life support? Is it ethically permissible to hasten death? In the United States, 5 states have legalized assisted suicide (although only for competent adults). In Belgium and the Netherlands, euthanasia is legal for children under some ... -
Quel accès aux soins palliatifs pour les enfants porteurs d'une maladie chronique complexe en Belgique?
2020, HE Léonard de VinciArticle scientifiqueLes maladies chroniques complexes (MCC) sont définies comme étant des conditions médicales avec une atteinte systémique sévère, nécessitant le recours à des hospitalisations pédiatriques et limitant l’espérance de vie (Feudtner et al., 2000). Une étude européenne (Håkanson et al., 2017) suggère que plus d’un tiers des enfants décédés en Belgique en 2008 l’étaient à cause de MCC. Les recommandations ... -
Recensement d'un nombre d'enfants atteints d'une maladie chronique complexe en région de Bruxelles-Capitale (rapport final)
2018, HE Léonard de VinciArticle scientifiqueRapport et recensement du nombre d'enfants atteints de MCC en région Bruxelles-Capitale. -
Soins palliatifs en pédiatrie, éthique et relation au patient
2014, HE Léonard de VinciArticle scientifiqueL’extension aux personnes mineures de la loi belge sur l’euthanasie, intervenue courant 2014, pose question au regard des besoins des enfants en contexte de soins palliatifs pédiatriques. Ces besoins concernent essentiellement l’attention portée aux interrelations entre l’enfant, sa famille et l’équipe de soins ainsi qu’au soulagement de la douleur, physique, psychique et spirituelle. Des repères ...