Paediatric palliative care aims to improve the quality of life of critically ill children, often at the end of their lives. Preventing or relieving physical pain, treatment-related symptoms, or psychological suffering are clear goals. But does this care really improve children’s quality of life? The question underpins the research of Marie Friedel, a pioneer in the field in Belgium. A PhD student at the UCLouvain Institute of Health and Society (IRSS), under the supervision of Professors Isabelle Aujoulat and Jean-Marie Degryse, she has sought to measure ‘quality of life’. Faced with the lack of measurement instruments here, she became interested in one previously tested in Africa called the Children's Palliative Outcome Scale (APCA C-POS), which was available only in English. Ms Friedel adapted and developed it for Belgium, in French and Flemish, in an effort to make children and parents heard. The focus of multicentric study since January 2019, through collaboration among six paediatric liaison teams, the instrument could become commonly used by teams supporting critically ill children and their families. The goal is to increase individualisation of care for families and children.
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