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Paediatric palliative care

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https://www.readbyqxmd.com/read/28329430/maintaining-family-life-balance-while-facing-a-child-s-imminent-death-a-mixed-methods-study
#1
Katri Eskola, Eva Bergstraesser, Karin Zimmermann, Eva Cignacco
AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family. Parents have specific needs, especially when they care for a dying child at home. DESIGN: Concurrent embedded mixed methods design. METHODS: This sub-study of the nationwide survey, 'Paediatric End-of-Life Care Needs in Switzerland' (2012-2015) included 47 children who received EOL care at home from 2011-2012...
March 22, 2017: Journal of Advanced Nursing
https://www.readbyqxmd.com/read/28294926/-paediatric-palliative-care-multidisciplinary-and-pro-active
#2
G C B Bindels de Heus, L M Ball, E M C Michiels, H A Moll, E H Niks, S M van Walraven
Every child with a life-limiting or threatening illness, and his or her family, has a right to palliative care. Palliative care is not limited to end-of-life care, but starts from the moment of diagnosis and is independent of whether there are curative options. To optimise quality of life of both the child and the family, the emphasis of care should be on both somatic and psychosocial and spiritual aspects from the very start, and goals should be set together with the child and the family. A multidisciplinary and pro-active approach is essential if this is to be achieved...
2017: Nederlands Tijdschrift Voor Geneeskunde
https://www.readbyqxmd.com/read/28274216/primary-care-physicians-educational-needs-and-learning-preferences-in-end-of-life-care-a-focus-group-study-in-the-uk
#3
Lucy Ellen Selman, Lisa Jane Brighton, Vicky Robinson, Rob George, Shaheen A Khan, Rachel Burman, Jonathan Koffman
BACKGROUND: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation...
March 9, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28270396/affording-opportunities-to-discuss-deterioration-in-paediatric-palliative-care-consultations-a-conversation-analytic-study
#4
Stuart Ekberg, Susan Danby, Anthony Herbert, Natalie K Bradford, Patsy Yates
OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations. METHODS: 9 consultations were video recorded in an Australian paediatric palliative care service...
March 7, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28255137/clinical-spectrum-of-children-receiving-palliative-care-in-malaysian-hospitals
#5
L A Chong, F Khalid, T B Khoo, S H Teh, G L Kuan, A M Aina Mariana, E Alias, C H Chieng, H Razali, G B Ong, S H Zainah, I N C Shukor, J J Wong
INTRODUCTION: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. METHODS: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out...
February 2017: Medical Journal of Malaysia
https://www.readbyqxmd.com/read/28245162/prioritisation-of-future-research-topics-in-paediatric-palliative-care-in-ireland-a-delphi-study
#6
Claire Quinn, Sandra McCarthy, Mary Devins, Maeve O'Reilly, Marie Twomey, Julie Ling
This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving the quality of life of children living with, or dying from, a life-limiting condition. Ideally, support for children requiring palliative care begins at the time of diagnosis, which for many children with life-limiting conditions can be from birth. There is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex care needs, resulting in care being provided by a range of voluntary and statutory agencies...
February 2, 2017: International Journal of Palliative Nursing
https://www.readbyqxmd.com/read/28193270/the-experience-of-providing-end-of-life-care-at-a-children-s-hospice-a-qualitative-study
#7
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
#8
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
#9
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
#10
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...
March 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
#11
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
#12
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
#13
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
#14
REVIEW
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...
April 2017: Journal of Pharmacy and Pharmacology
https://www.readbyqxmd.com/read/27701795/adequacy-of-palliative-care-in-a-single-tertiary-neonatal-unit
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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
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