22 research outputs found

    Predicting death in children

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    It is rare for paediatric palliative medicine physicians to have to break news of a diagnosis of a life-limiting condition (LLC). Usually that has been done weeks or months before. It is much commoner for us to be faced with the question: "how long?" Clearly it is a question that cannot be answered with certainty, and yet a great deal may depend on it. While palliative care (PC) should ideally be available from diagnosis, the need for 'active' practical PC intervention will fluctuate during the course of a child's illness. For most children this will last months or years; often decades. Typically, there will be several periods during which death seems likely before the final terminal episode, particularly among children with non-malignant LLC. Optimal management of all these episodes depends on anticipating the child’s needs in order for timely interventions - or withdrawal of interventions - to be considered. This consideration in turn depends on recognising that such an episode has begun. Providing adequate PC critically depends on making a diagnosis of dying. In this article, we will consider why it is important to make a 'diagnosis of dying', briefly review some of the tools available to help, and examine some of the evidence from published literature in children and adults

    A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life

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    BACKGROUND: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions.AIM: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life.DESIGN: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797).DATA SOURCES: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis.RESULTS: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views.CONCLUSION: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective
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