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      Palliative Care in Child Neurology: The more you look, the less you see

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          Abstract

          Palliative care (PC) is holistic care of a child with a severe illness and his/her family which should begin soon after the diagnosis of a life-limiting illness is made. Communication forms the cornerstone of PC which begins with breaking the bad news in the right manner, continues in discussion with the family about their choices and expectations through life, and culminating in end-of-life and bereavement care. Raising awareness and devel-oping PC services will eventually lead to a reduced burden on health-care systems, higher satisfaction rates and better quality of life for the children and their families.

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          Redefining Palliative Care—A New Consensus-Based Definition

          Lukas Radbruch, Liliana De Lima, Felicia Marie Knaul … (2020)
          Context. The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective. The main objective of this article is to present the research behind the new definition. Methods. The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results. The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion. Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.
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            Advance Care Planning in Palliative Care for People With Intellectual Disabilities: A Systematic Review

            Hille Voss, Anique Vogel, Annemieke M.A. Wagemans … (2017)
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              Paediatric Palliative Care: Theory to Practice

              Maryann Muckaden, Manjiri K Dighe, PD Balaji … (2011)
              Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice.
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                Author and article information

                Journal
                Journal ID (doi): 10.26407
                Title: Journal for ReAttach Therapy and Developmental Diversities
                Abbreviated Title: JRTDD
                Publisher: ReAttach Therapy International Foundation
                ISSN (Electronic): 2589-7799
                Publication date (Electronic preprint): 8 October 2020
                Publication date (Electronic): 25 December 2020
                Volume: 3
                Issue: 1
                Affiliations
                [1 ]Department of Pediatrics, Armed Forces Medical College, Pune, India
                [2 ]Child Neurology Division, Center of Excellence & Advanced Research on Childhood Neurodevelopmental Disorders, Department of Pediatrics, All India Institute of Sciences, New Delhi, India
                [3 ]SRCC Children’s Hospital, Mumbai, India
                [4 ]P.D. Hinduja National Hospital, Mumbai, India
                Author notes
                Correspondence: Sheffali Gulati ( sheffaligulati@ 123456gmail.com )
                Article
                DOI: 10.26407/2020jrtdd.1.36
                SO-VID: 61ffbda3-7201-46cb-af66-4fd1cbe3c011
                Copyright © © Sondhi, V., Gupta, J., Sanghi, V., Gursahani, R., Gulati, Sh.
                License:

                This is an open access article published by ReAttach Therapy International Foundation and distributed under the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0).

                History
                Date received : 30 August 2020
                Date revision received : 29 September 2020
                Date accepted : 6 October 2020
                Page count
                Pages: 3
                Categories
                Subject: Letter to the Editor

                ScienceOpen disciplines: Pediatrics,Psychology,Special education,Health & Social care,Clinical Psychology & Psychiatry
                Keywords: child neurology,palliative care,communication
                Data availability:
                ScienceOpen disciplines: Pediatrics, Psychology, Special education, Health & Social care, Clinical Psychology & Psychiatry
                Keywords: child neurology, palliative care, communication

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