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Paediatric palliative care

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https://www.readbyqxmd.com/read/28193270/the-experience-of-providing-end-of-life-care-at-a-children-s-hospice-a-qualitative-study
#1
Tracey McConnell, Sam Porter
BACKGROUND: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children's hospice. METHODS: Qualitative research incorporating interviews and a focus group. Data were analysed using thematic analysis. Purposeful sampling led to a total of 15 care team staff recruited from a children's hospice offering palliative and specialist care to life-limited children and young people...
February 13, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28145187/end-of-life-care-for-infants-children-and-young-people-with-life-limiting-conditions
#2
Lynne Pearce
Essential facts According to the Royal College of Paediatrics and Child Health, the UK has one of the worst child mortality rates in western Europe, with more than 2,000 children and young people dying in 2012. In addition, it is estimated that about 50,000 children and young people in the UK have a life-limiting condition that may need palliative care.
February 1, 2017: Nursing Standard
https://www.readbyqxmd.com/read/28135759/regional-paediatric-palliative-care-model-improves-the-quality-of-life-of-children-on-long-term-ventilation-at-home
#3
F Rusalen, C Agosto, L Brugnaro, F Benini
In the last 20 years, the prevalence of children on domiciliary long-term ventilation (LTV) has increased in many countries and in Italy it is now 4.3/100,000 (1). The complex management of these patients' conditions requires highly specialised expertise that is provided by integrated multi-disciplinary teams and calls for solutions from a number of institutional agencies (2). The global care offered to these patients by paediatric palliative care (PPC) also embraces their social needs (3-4). This article is protected by copyright...
January 30, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28078429/aims-and-tasks-in-parental-caregiving-for-children-receiving-palliative-care-at-home-a-qualitative-study
#4
Lisa M Verberne, Marijke C Kars, Antoinette Y N Schouten-van Meeteren, Diederik K Bosman, Derk A Colenbrander, Martha A Grootenhuis, Johannes J M van Delden
: In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed...
January 11, 2017: European Journal of Pediatrics
https://www.readbyqxmd.com/read/28070671/place-of-death-of-children-with-complex-chronic-conditions-cross-national-study-of-11-countries
#5
Cecilia Håkanson, Joakim Öhlén, Ulrika Kreicbergs, Marylou Cardenas-Turanzas, Donna M Wilson, Martin Loucka, Sandra Frache, Lucia Giovannetti, Wayne Naylor, YongJoo Rhee, Miguel Ruiz Ramos, Joan Teno, Kim Beernaert, Luc Deliens, Dirk Houttekier, Joachim Cohen
: Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries...
January 9, 2017: European Journal of Pediatrics
https://www.readbyqxmd.com/read/27878604/-paediatric-palliative-care-ppc-a-particular-challenge-tasks-aims-and-specifics
#6
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...
January 2017: Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
https://www.readbyqxmd.com/read/27849163/fifteen-minute-consultation-perinatal-palliative-care
#7
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
#8
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
#9
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
#10
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...
February 2017: 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
#11
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...
January 2017: Archives of Disease in Childhood. Fetal and Neonatal Edition
https://www.readbyqxmd.com/read/27611924/pop-up-a-new-model-of-paediatric-palliative-care
#12
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
#13
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
#14
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
#15
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
#16
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
#17
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
#18
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
#19
(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
#20
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
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