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Paediatric palliative care

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https://www.readbyqxmd.com/read/27878604/-paediatric-palliative-care-ppc-a-particular-challenge-tasks-aims-and-specifics
#1
Boris Zernikow, Barbara Gertz, Carola Hasan
In Germany, there are about 50,000 children, adolescents and young adults with life threatening or life limiting conditions, who will likely die due to their illness before reaching the age of 40. In recent years prevalence has increased significantly.The aim of paediatric palliative care (PPC) is to optimize quality of life for the child, adolescent or young adult and its whole family. Whenever possible the patient should be treated at home.The very complex and rare diseases as well as the patients' wide range of age and developmental stage are particularly challenging within PPC...
November 23, 2016: Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
https://www.readbyqxmd.com/read/27849163/fifteen-minute-consultation-perinatal-palliative-care
#2
Peter Sidgwick, Emily Harrop, Brenda Kelly, Ana Todorovic, Dominic Wilkinson
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplinary support for families. In this paper we define and describe one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors.
November 14, 2016: Archives of Disease in Childhood. Education and Practice Edition
https://www.readbyqxmd.com/read/27739059/palliative-medicines-for-children-a-new-frontier-in-paediatric-research
#3
Liz Jamieson, Ian C K Wong, Finella Craig, Nanna Christiansen, Karen Brombley, Catherine Tuleu, Emily Harrop
OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo...
October 13, 2016: Journal of Pharmacy and Pharmacology
https://www.readbyqxmd.com/read/27701795/adequacy-of-palliative-care-in-a-single-tertiary-neonatal-unit
#4
Deborah Gilmour, Mark W Davies, Anthony R Herbert
AIM: End-of-life care remains part of the scope of practice in all neonatal units. This study aimed to characterise the end-of-life care provided in an Australian tertiary neonatal centre, where paediatric palliative care was accessible via a consultative service. METHODS: This retrospective cohort study examined indicators of quality palliative care provided to 46 infants born within a 30-month period. The cohort included four infants who received palliative care consultations additional to usual neonatal care...
October 4, 2016: Journal of Paediatrics and Child Health
https://www.readbyqxmd.com/read/27682139/how-many-children-and-young-people-with-life-limiting-conditions-are-clinically-unstable-a-national-data-linkage-study
#5
Stuart Jarvis, Roger C Parslow, Pat Carragher, Bryony Beresford, Lorna K Fraser
OBJECTIVE: To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with life-limiting conditions (LLCs). DESIGN: National cohort of CYP with LLCs using linked routinely collected healthcare data. SETTING: Scotland. PATIENTS: 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014. MAIN OUTCOME: Clinical stage based on emergency inpatient and intensive care unit admissions and date of death...
September 28, 2016: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/27638112/antenatal-palliative-care-consultation-implications-for-decision-making-and-perinatal-outcomes-in-a-single-centre-experience
#6
Stephanie Kukora, Nathan Gollehon, Naomi Laventhal
BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in perinatal decision-making. METHODS: A single-centre retrospective cohort study was undertaken for patients referred for outpatient antenatal counselling by a neonatologist over a two-and-half-year period. Patients also receiving APCC were compared with infants with similar prognoses who did not...
September 16, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
https://www.readbyqxmd.com/read/27611924/pop-up-a-new-model-of-paediatric-palliative-care
#7
Martha F Mherekumombe, Jude Frost, Sue Hanson, Elizabeth Shepherd, John Collins
No abstract text is available yet for this article.
September 9, 2016: Journal of Paediatrics and Child Health
https://www.readbyqxmd.com/read/27550644/respite-needs-of-families-receiving-palliative-care
#8
Christine H Smith, Carol A Graham, Anthony R Herbert
AIM: The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this...
August 23, 2016: Journal of Paediatrics and Child Health
https://www.readbyqxmd.com/read/27540201/the-role-of-the-pharmacist-in-paediatric-palliative-care
#9
Jumana Khan, Sian Gaze, Stephen Tomlin
AIM: To explore what involvement pharmacists in the UK have in paediatric palliative care OBJECTIVES: 1. To determine the current roles and services provided by pharmacists to paediatric palliative care patients.2. To establish how other members of the multidisciplinary team perceive the pharmacist's role and the extent to which they value the pharmacist's contributions.3. To identify the references used by the multidisciplinary team to make clinical decisions about medication use in paediatric palliative care patients...
September 2016: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/27383517/metronomics-during-palliative-care-in-paediatric-oncology-for-sure-but%C3%A2-handle-me-with-care
#10
EDITORIAL
Nicolas Andre, Eddy Pasquier
No abstract text is available yet for this article.
August 2016: Acta Paediatrica
https://www.readbyqxmd.com/read/27358616/outcome-of-childhood-malignancies-at-the-university-of-port-harcourt-teaching-hospital-a-call-for-implementation-of-palliative-care
#11
Gracia K Eke, Nwadiuto A Akani
BACKGROUND: Cancers in children are yet to be recognised as an important cause of childhood morbidity and mortality in developing countries where more than 70% of the world annual cases occur. Despite the limited resources and whatever the projected outcome, children with cancer need treatment, be it curative or palliative. OBJECTIVES: To determine outcome of cancers in children at the UPTH; identify factors that influence outcome, highlight the need for palliative care...
March 2016: African Health Sciences
https://www.readbyqxmd.com/read/27316635/educational-impact-of-paediatric-palliative-simulation-study-days
#12
Kate Renton, Hilary Quinton, Anton-Paul Thomas Mayer
BACKGROUND: The use of simulation-based medical/nursing teaching is increasingly widespread. Simulation-based teaching offers an immersive learning experience where professionals can practice communication and practical skills in a safe, authentic environment. We designed a paediatric palliative simulation study day primarily aimed at nursing staff who manage these patients in the community/hospice. We believe this is the first of its kind in the UK. AIMS: To establish whether attendance at a paediatric palliative simulation study day improved confidence and knowledge in management of common and/or difficult situations in palliative care...
June 17, 2016: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/27247087/health-related-quality-of-life-outcome-measures-in-paediatric-palliative-care-a-systematic-review-of-psychometric-properties-and-feasibility-of-use
#13
REVIEW
Lucy H Coombes, Theresa Wiseman, Grace Lucas, Amrit Sangha, Fliss Em Murtagh
BACKGROUND: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. AIM: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties. DESIGN: A systematic literature review and analysis of psychometric properties...
December 2016: Palliative Medicine
https://www.readbyqxmd.com/read/27156415/research-and-commentary
#14
(no author information available yet)
Aim To gain an understanding of paediatric palliative care from healthcare workers and the parents of children who have received or provided palliative care with the aim of developing services through identifying priorities for research.
May 9, 2016: Nursing Children and Young People
https://www.readbyqxmd.com/read/27139520/a-pilot-programme-of-clinical-practice-improvement-for-future-consultant-doctors
#15
Kim Oates, Cathy Vinters, John Cass-Verco, Mandy Fletcher, Narinder Kaur, Martha Mherekumombe, Alice Tang
BACKGROUND: To provide junior doctors with tools to improve patient care in their workplace, a partnership was developed between the Clinical Excellence Commission (CEC) and the Royal Australasian College of Physicians (RACP) to help trainee consultants carry out clinical practice improvement (CPI) projects during clinical work. METHODS: Based on a patient-care problem they wished to resolve, trainee consultants attended a 2-day face-to-face workshop to learn quality-improvement methods, describe their proposals and refine them using CPI methodology...
May 3, 2016: Clinical Teacher
https://www.readbyqxmd.com/read/27131152/european-survey-on-standards-of-care-in-paediatric-oncology-centres
#16
Jerzy R Kowalczyk, Marzena Samardakiewicz, Kathy Pritchard-Jones, Ruth Ladenstein, Samira Essiaf, Edel Fitzgerald, Giulia Petrarulo, Gilles Vassal
BACKGROUND: In recent years, the European Commission has supported an increased focus on rare cancers in order to improve quality of care, disseminate best practice and set up networks to improve access that is essential to continued progress. At European Union (EU) conference in 2009, an agreement was reached to create a 'European Standard of Care for Children with Cancer'. In 2013, the European Paediatric Oncology Society launched a Europe-wide survey in order to assess the implementation of the Standards...
July 2016: European Journal of Cancer
https://www.readbyqxmd.com/read/27129677/healthcare-staff%C3%A2-s-experience-in-providing-end-of-life-care-to-children-a-mixed-method-review
#17
Tracey McConnell, David Scott, Sam Porter
BACKGROUND: Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges. AIM: The aim of this review is to explore the experiences of healthcare professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families...
April 29, 2016: Palliative Medicine
https://www.readbyqxmd.com/read/27102758/the-importance-of-early-involvement-of-paediatric-palliative-care-for-patients-with-severe-congenital-heart-disease
#18
REVIEW
Sophie Bertaud, David F A Lloyd, Joanna Laddie, Reza Razavi
Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory...
October 2016: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/27074283/infraorbital-nerve-block-for-postoperative-pain-following-cleft-lip-repair-in-children
#19
REVIEW
Gustavo Feriani, Eric Hatanaka, Maria R Torloni, Edina M K da Silva
BACKGROUND: Postoperative pain is a barrier to the quality of paediatric care, the proper management of which is a challenge. Acute postoperative pain often leads to adverse functional and organic consequences that may compromise surgical outcome. Cleft lip is one of the most common craniofacial birth defects and requires surgical correction early in life. As expected after a surgical intervention in such a sensitive and delicate area, the immediate postoperative period of cleft lip repair may be associated with moderate to severe pain...
2016: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/27061570/development-and-pilot-evaluation-of-a-home-based-palliative-care-training-and-support-package-for-young-children-in-southern-africa
#20
Sara Naomi Naicker, Linda Richter, Alan Stein, Laura Campbell, Joan Marston
BACKGROUND: The leading cause of death among young children in southern Africa is complications due to HIV infection and, in South Africa, over a third of all deaths of children younger than five are associated with HIV infection. There is a great and urgent need for children's palliative care in Africa, whether HIV-related or not. It is often not possible for sick children and their carers to attend clinics and hospitals cannot accommodate children for long periods of time. As a result children are often cared for in their own homes where caregivers require support to provide informed and sensitive care to reduce children's suffering...
2016: BMC Palliative Care
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